Disordered Eating & Celiac – The post every Gluten Free or Celiac Woman should read….

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Lately I’ve been feeling chained to living a gluten free lifestyle. It’s like a giant, shackled ball is on my ankle following me around everywhere. Even before I started blogging about Celiac and gluten free living, it has been all I think about. Any symptom I have, I wonder if I ate something with gluten. Anytime we go anywhere, I wonder if I can trust the place we are eating to not make me ill. I’m finding myself obsessed with food, obsessed with Celiac…

Not to mention, I feel like a huge burden to others. We just went to a cookout on Friday and they called to see what we wanted to eat. Aaron had to do the whole explanation thing of what I can eat, it’s not just wheat etc…

I ended up eating before we went over there and picking up a fruit bowl to take with some Woodchuck Cider Ale so I wouldn’t be tempted with snacks or be hungry the whole night.

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I realize there are people with bigger problems than I have right now, but for me this is a huge hill I’m still learning to climb. My choices are so limited and I’m already a picky eater so it makes it even more difficult for me to find foods to enjoy. Between the gluten allergy, latex allergy and lactose intolerance problems – I’m struggling. Even more so than I ever have in the past and I think it’s because I’ve become more aware, more diligent of my problems. Specifically now that I’ve been diagnosed with these ailments and know what’s going on.

I’m one of those people that have to understand everything. My friend Janine always jokes with me (and gets annoyed I’m sure) because I ask her “why” all the time. I’m the kid that loved to learn. My grandfather used to teach me lessons on the drive to school and always made sure I was ahead of my grade with reading, writing and arithmetic! So, why can’t I figure this thing out??

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My pop with all our pets growing up – What ugly wallpaper!!

Did you know that 3 out of 4 women suffer from disordered eating in one way or another? That was a study done in 2008…. Can you imagine what the statistics are now with social media growing so large – giving access to so much information to so many people?

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What is Disordered Eating?

Disordered eating is a classification (within DSM-IV-TR, used in the health-care field) to describe a wide range of irregular eating behaviors that do not warrant a diagnosis of a specific eating disorder such as anorexia nervosa or bulimia nervosa. Affected people may be diagnosed with an eating disorder not otherwise specified. A change in eating patterns can also be caused by other mental disorders (e.g. clinical depression), or by factors that are generally considered to be unrelated to mental disorders (e.g. extreme homesickness).”

According to a 2008 study at University of North Carolina Chapel Hill, those in their 30s and 40s report disordered eating at virtually the same rates. Findings show that:

  • 75 percent of women report disordered eating behaviors or symptoms consistent with eating disorders; so three out of four have an unhealthy relationship with food or their bodies
  • 67 percent of women (excluding those with actual eating disorders) are trying to lose weight
  • 53 percent of dieters are already at a healthy weight and are still trying to lose weight
  • 39 percent of women say concerns about what they eat or weigh interfere with their happiness
  • 37 percent regularly skip meals to try to lose weight
  • 27 percent would be “extremely upset” if they gained just five pounds
  • 26 percent cut out entire food groups
  • 16 percent have dieted on 1,000 calories a day or fewer
  • 13 percent smoke to lose weight
  • 12 percent often eat when they’re not hungry; 49 percent sometimes do

Everything I learned about nutrition for the past 4 years is wrong.

All the tools I used to lose weight, probably made me even more ill and could potentially cause numerous problems with me as I get older.

Awesome.

A Penn State University study found that women with controlled celiac disease, eating a gluten free diet – are still more likely to suffer from stress, disordered eating and depression.

As a fitness expert, the more I learn about wheat, gluten and GMO’s I question how I can still promote and recommend these items to my clients.

My hormones are so out of whack that I try to work my ass off – only to build NO lean muscle – just gain weight or stay the same. I never understood why I did everything “right” and it didn’t work. Well, my TSH levels were off the chart, I suffered from low testosterone levels and I consumed gluten at an extra-ordinary rate! No wonder I didn’t feel well despite being “healthy.”

You can imagine how frustrating this is for a fitness professional to try so hard and not get the body the others have. To obsess over what you are putting in your mouth, doing the right things, only to have your body rebel. It’s the same feeling to have a hair dresser with horrible hair or a foot model with warts!

Now my body is running the show and I have no control. I finally know what is wrong but there is still this part of me that still feels like this is temporary and I will be able to go back to eating regular foods anytime now.

I work about 10-12 hours/day 6-7 days per week and I don’t have time or want to learn new recipes or foods. I want things to be quick and simple. I’m fortunate to have a husband that doesn’t mind cooking, but often I feel guilty when he works the same as I do and then ends up cooking.

Today I realized I’ve developed a Disordered Eating habit. I’m only eating things that are quick and easy. I’m not getting enough protein and whole foods in my diet. I’m consuming too many snacky type foods. To put this in perspective and be totally honest – I ate a half a bag of Popcorners, 3 gluten free cookies, 2 gluten free soft pretzels, a gluten free cider ale and some Kefir smoothie with my vitamins. I’m self admitting here, hoping it will wake me up or you can give me some support to lift my head up and eat some meat!

There is a difference between happy and healthy or skinny. I’d much rather be happy and healthy but am struggling to put the pieces together.

I will figure this out….

Last night I had a great balanced meal! Salmon, green beans and purple jasmine rice!! I need to stay committed to these types of meals and eat them throughout the day instead of just dinner.

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Am I crazy? Do you suffer from any of these? Leave me a comment and let me know!!

Comments

 

  • Tric says:

    I definately can relate. Thanks for sharing. On top of my gluten allergy I have an allergy to soy and to corn as well, so my options are very limited. On top of all this, I also have muscle troubles due to years of detected/diagnosed malnutrition and I am gaining weight at a substantial rate which only manifests that problem. I am constantly injured and as a result easy meals are my go-to option for me. I attempt to eat healthy but I often go to snack foods because there is little or no preparing involved. I sometimes want to just throw my hands up in that air and quit. I will admit that there are times where I just opt to suffer and eat what I know might contain gluten somedays, especially when I am at a praty. I take a benadryl and pray when it comes to my soy and corn allergies, because well, let’s face it , it’s hard to find easy foods to eat, besides fruits and vegetables that don’t contain either. I feel your struggle.

     

    • PrettyLittleCeliac says:

      Tric-

      Thanks for posting. I completely understand where you are coming from. It’s just so easy to grab a “gluten free” snack instead of eating regular foods. Do you find the benadryl works for you? I’ve never tried it after I’ve been poisoned. My joints get so sore I can’t even bend them!

      Rebecca

       

  • Sarah Casebolt says:

    I empathize and get what you all mean! I tend to opt for snack type foods lately for fear of messing myself up or at times I am so sick I cannot eat at all. It comes in waves I have noticed, that for a few weeks/months I am good then BAM! I am out of commission from who knows what. I buy all organic veggies and fruit not to mention all Gluten Free-everything! It is tiring trying to find a restaurant to go out to so sadly I decline invitations, I eat before I go to a friends or a work function for fear of getting sick. Simply put Gluten and fear run my life, not to mention other areas such as lack of thyroid and tons of steroidal medications that “help” you gain weight. I use that term with a bunch of sarcasm, I am scared to eat, I eat simple things, my diet is boring to me, and I am oveweight-at least for my 5’2 frame. Sadly I am at a loss ladies but I find peace and solice in that we are NOT alone. This is a disease that is getting alot of spotlight, but there are also those negative nancy types that state this is a “diet fad!” Thank you for the information, and I think I have eating disorders for fear of eating the wrong thing. Eeek!

    Sarah

     

  • Brenda Bourelle says:

    Rebecca

    Thank you for sharing and for all the research, I too find living gluten free challenging and know I often make less than ideal food choices. Choosing the same foods day after day (breakfast -yogurt & Udi’s granola; lunch -pbj or protein drink ) and then having little to no energy to cook after a full day at work.
    On the subject of pain, i was diagnosed with Fibromyalgia more than 10 years ago and Celiac approximately 3 years ago. I read in a book about Celiac Disease (don’t recall the source) that sometimes people with Fibromyalgia who eat a gluten free diet sometimes have less pain. This is not true for me, but allegedly it is true for some.

    I’ve only recently found your blog and want to say Thank you for sharing.

    Brenda

     

  • Victoria Rutigliano says:

    Thanks for posting. I have been at this a long time. So… I know how frustrating it can be. I still get mad when I hear about my friends going out for pizza. I am so lucky that I live with a suppoting Partner that is an amazing cook. He creates wonderful meals for me so I don’t feel deprived. I still get mad at times. I am all Italian, so most of the food I grew up with are completely off limits. I was also allergic to lactose, but as I got older it went away. It is so important for a person with Celiac to eat balanced meals. What seems to work for me is cooking in advance and having variety. I also work out a lot and I have to make sure that i have food ready to eat so I don’t grab things that will make me sick. I don’t eat any gluten free snack foods. The sugar really gives me stomach issues. I have been eating mostly like a “cave man”…meat, eggs, veggies, sweet potato, nuts. Seems to be working well. I am completely symptom free. I learned the hard way that trying to go back and cheat a little with gluten is just going to amle me feel like crap. I still get mad when I am at a restaurant with friends and I get passed the bread basket….but I just let it go. I often say to my Partner, “Mark”, that in my next life… I will be eating pizza every day ! lol.. I know it is hard…. all of us on your site are grateful for your posts. It is great to share ideas and thought.

     

  • Melissa says:

    Your thoughts and feelings and the way you express them, it is like I am reading a story I wrote. I have always been a picky eater but LOVED to eat the foods I liked. I was diagnosed with Celiac last month and everything has changed. I HATE food. I am terrified of it actually. I love the morning because I can get through it without eating. I have a couple cups of coffee and go on about my business; this is not a whole lot different than before. By lunch, I am hungry but feel good. I know I have to eat so I do but I hate it because the “feel good” is gone. I am furious about this whole thing, absolutely furious. I do try to find gratitude; this IS fixable but it seems like such a massive mountain to climb. I will say, if I have to hear from anyone (ever again), “Oh, celiac? Thats not a big deal, just a diet change,” I will literally scream. I am trying to believe that this will get better and that food and my stomach will not always hate each other but it is difficult. Thank you for sharing your journey.

     

    •  PrettyLittleCeliac says:

      Hi Melissa-

      I know exactly what you mean about being furious. I just keep saying to myself, it will get easier. And it has in many ways. I wish I loved to cook and could try all these yummy recipes I see other gluten free bloggers trying. I even thought about doing it once a month or a week but that dream fades quickly.

      We can get through this! I have no shyness about sharing all my thoughts and problems with everyone so we all know we aren’t alone on this journey. I’ve found things I like that I eat all the time, it just gets boring!

      Welcome to the PLC community!

      Rebecca

       

  •  Jen says:

    I’m recently diagnosed gluten, egg yolk, spinach, almond and cashew intolerant. I’m still mad at the world most days. Why me? I eat healthy, I exercise, I lost the weight, and I got sick anyway. I have been on a restricted diet (no carbs for almost 6 weeks now, no allergy foods for the last three). I can usually find GF foods, but try finding them with no gluten or no egg. No gluten + no egg = no pizza restaurants and very few spaghetti places! It’s frustrating to go out for date night and have it be a disaster because the waitress doesn’t have a clue what a food allergy is. I guess in some respects I’m luckier than most, I don’t get physically ill from consuming allergen foods. My body just couldn’t process the carbs and I gained 40 lbs. I was also vitamin deficient. There is no warning, no clue if I have ingested a banned substance, so I don’t have as much pressure to be super careful at restaurants. I just do the best I can, ask for an allergen menu, and make a wise choice. Alternatively, if I use a product with gluten or almond oil like makeup or hair care, I itch like none other. I’m tired of trying one product at a time and then waiting to see if I have a reaction or not. Even some products that do not have allergens in them, I still can’t use. So, I’ve gone from high maintenance to no maintenance, and I’m learning to be ok with that.

    It is certainly hard for others to understand, but at least we have each other.

     

    •  PrettyLittleCeliac says:

      Jen-

      That’s quite the mix of allergies! I know what you mean about being mad at the world. How long have you gone not knowing you were ill from these foods?

      What about potatoes and rice? I find a good sweet potato can really hit the spot for me carb wise and not make me sick.

      As far as vitamin deficient, are you on any supplements? Do you get your blood checked regularly? Low magnesium levels can really cause problems with people~

      Rebecca

       

      •  Jen says:

        About 2 years probably, but it didn’t get noticeable until the last year. I’m on a carb restricted diet to lose the weight, so I try not to eat any carbs, but I can occasionally have one serving in the evenings, so sweet potatoes or a piece of gluten/egg free bread is my pick. Rice and peanuts seem to inflame the yeast that we’re also trying to control.

        I’m taking a bunch of supplements including B6, stress detox, bowel detox, potassium-magnesium, and pepzin GI. I have a follow-up appointment this week, so hopefully I’m well on the recovery road.

         

        •  PrettyLittleCeliac says:

          Jen-

          I hope you are well on your way to recovery as well!!!

          xoxo

          Rebecca

           

  •  Brandi says:

    All of this sounds so familiar! I have been trying to learn about the whole GF diet. I also don’t tolerate dairy (except for Greek yogurt) I also don’t eat meat. So I also feel like I eat too much “snacky” GF foods. Rice cakes, rice chips and a ton of fruit. I am obsessed. I lost 65 pounds, the hard way…..being sick from not knowing what was wrong, so I literally starved. I was afraid to eat anything. I felt emaciated. I began drinking Ensure, so I knew that at least I was getting some kind of nutrition. I don’t cook much of my own GF food, because it’s more work and expense, just for me. My husband is a farmboy. Raised on meat and potatoes and bread! I used to enjoy that too, now it makes me feel nauseated to think about it. But I still have to cook this for him. So I snack on rice cakes and fruit while I cook his food. I still don’t think that I am getting the balanced food intake that I should, but so much hurts me, that I stick to what I know doesn’t make me sick. Afraid to try something different. I don’t know how to do this. I thought I already ate healthy, was active enough. Now I am exhausted and in pain ( diagnosed with fibromyalgia), and yes, very depressed. I don’t go out except for with my husband, he helps me try to explain to people what I can and can’t eat, and why (as if I need to explain it, but sometimes we have to just so I won’t be “bullied”!! That’s what it feels like sometimes!! I have even stopped going to church, just because I have been asked, “are you one of those girls who goes and throws up afer you eat?”, another, “do you feel alright, you don’t look like you feel good”, and then there are all the busy bodies, who know EVERYTHING about GF and tell me what I can and can’t eat! Like I said, I lost 65 pounds, fast. Some people look at me “pitifully”. Like I don’t already feel bad enough! So, back to the subject…..I wondered if I am being so paranoid about food, if I was in the midst of having an eating disorder? I still drink Ensure, every morning. And eat fruit during the day. On the positive side, I am grateful and do enjoy this site! I have only recently found you, but it’s a ray of light in this darkness of learning all over again, how to eat healthy. Healthy for me. I do feel better reading all these other comments and to know that I am not the only one! That there are people who do understand and I don’t have to explain my eating habits to, or explain to someone that, no, I don’t go and throw up after I eat, not on purpose anyway! I will end my ramblings now! Thanks for the support, all of you!

     

    •  PrettyLittleCeliac says:

      Hi Brandi!

      Thanks for stopping by – 65lbs is a lot! I completely understand about being “bullied.” I usually feel more frustrated than anything! We just need to stand strong as a community for people to realize this isn’t the Atkins Diet or anything else that’s a fad. This is our life and we won’t live in fear or frustration. Let’s all share the things we love, what works, what doesn’t work so we don’t have to go through this alone.

      I’m going to try to go a few days with whole foods and then allow myself some snacks. I know from experience though, you don’t crave the snacks as much when you are eating whole foods.

      Why ensure? Those seem to have a ton of sugar in them!

      Rebecca

      Welcome to Pretty Little Celiac!

       

      •  Brandi says:

        yes, Ensure does have alot of sugar, and ingredients that I normally would stay away from, but it is the only thing that I have found that makes me feel like I can make it thru a day. I began drinking it after I remembered a lady I sat with while she was in hospice. She didn’t/couldn’t eat anything so all she had was Ensure. I went for months before I remembered Martha! So I thought, it’s worth a try. I was concerned about getting enough nutrition and vitamins. I couldn’t take my own supplements on an empty stomach. But I have been drinking one every morning so long that I can’t tolerate anything else in the mornings! And I still have days when I don’t eat b/c I’m either tired of the same old thing evryday or just not able to eat because of pain. It’s a vicious cycle

         

        •  PrettyLittleCeliac says:

          Oh, gosh! I know all about vicious cycles!!!

           

  •  susan @ snap and run says:

    I have Celiac as well as dairy and soy intolerances. I can completely understand where you’re coming from. There are days when I literally live on Chex with almond milk because of the convenience of it.

    The biggest thing for me was to disassociate eating with being social. Every once in a while I come across someone who treats Celiac as if it’s a choice I’m making. I usually just say ‘no thank you’ to whatever they’re trying to get me to eat, but if they push me eventually I come straight out and say ‘what you are trying to feed me could cause cancer later on. it is NOT worth it.’. That’s pretty much all it takes

    As for eating out, I have a system now. Only once did I get sick from hidden gluten at a restaurant and it was the first month I was diagnosed. I know how to handle it better now…and awareness has skyrocketed since then, so it’s getting easier. Several of the larger chains…like Chilis and Outback already have gfree menus available.

    As for food itself. I don’t love it anymore. There are plenty of whole food, yummy gfree recipes out there and they are definitely good…but it’s not the same, you know? Nothing is SINFULLY DELICIOUS and at times it’s disappointing.

    But I try to keep the big picture always in mind. I was undiagnosed for a few years and it was to the point where I wondered on a daily basis ‘how can i live like this?’. Now I don’t have to. I have my health, my life and my energy back. I did not develop a terminal ailment, I’m just being forced to eat a certain way. There are definitely worse things in life.

    I’m sure eventually you’ll find your groove!! Good luck

     

  •  GFree Laura says:

    I totally identify with the, “My choices are so limited and I’m already a picky eater so it makes it even more difficult for me to find foods to enjoy. ” comment! I was eating a lot of snacky foods while still in school, but have managed to get on a balanced diet now that I live at home with my parents. You can do it, I believe in you!

     

    •  PrettyLittleCeliac says:

      What foods do you tend to stick with?

      Rebecca

       

  •  Amy says:

    Oh my gosh! How are you in my head????? Every post I read makes me feel so much better that I am not alone! I have a HORRIBLE relationship with food and my body. I was OBSESSED with gluten products for 30 years and just ate and ate. I could not lose weight when I tried and was always sick and tired. I was called lazy and fat pretty much all the time for the first 30 years of my life. It was sad because I am the furthest thing from lazy. My mind is creative and fast but my body always let me down, it could not keep up. The physical part is getting better since I have been gluten free but I still have a lot of work to do on my mind. I struggled so much with food and body issues I have to work at loving them again. I eat like I don’t want to taste the food, fast and distracted. I have been working on eating things with many flavors and tasting and acknowledging each one as I eat. I also have been forgiving my body for all the “lazy” years realizing it actually hung in there pretty well considering the INSANE amounts of gluten and all of the doctors “treatments” that were well intended but so far off!!! Now that I am using fresh herbs and actually tasting my food and forgiving my body I am just starting to see the light!

     

    •  PrettyLittleCeliac says:

      Amy!

      Thanks for the comment, I just loved it. It makes ME feel like I am not alone too when everyone posts such wonderful things on my blog posts. At least now I know I’m not crazy!!
      What are your favorite herbs and spices to use? My palate is so bland..

      Rebecca

       

  •  Crystal Humes says:

    Thank you for sharing!!! I also have celiac disease & gastroparesis so I truly understan!!

     

  •  Angela Dennis says:

    I was diagnosed with celiac for about 1 year ago, completely gluten free. I always opt for the quick gluten free snack. Or don’t eat very much at all. I have found my appetite is just not the same anymore. On top of it all I am 22 and single, and when dating it all revolves around food. It’s not that fun always having to explain, oh sorry I can’t eat that, or that, or that. I usually just eat before going out and try to save myself from explaining things all night. Thanks for your blog its good to read things from people who really relate!

     

    •  PrettyLittleCeliac says:

      Angela-

      Thanks so much for the post!

      Did you struggle with dating before? I can’t even tell you how many dates I ended early or snuck into a bathroom because I was so sick from my meal. Or being so upset that I had a cute outfit on, only to have my stomach grow to pregnancy looking levels in the middle of the date! I would much rather have said to someone, I’m sorry I have a gluten allergy – than – excuse me could you please drive faster, I really need to use the restroom

      Regardless, we all have our issues. The best thing to get on a date is a small steak and baked potato or vegetable. Just tell them you don’t want seasoning or dressing on the steak!

      Thanks for joining us over here
      Rebecca

       

  •  Kathryn Macri says:

    I can relate. I am 49, have had “a nervous stomach” since I was a kid and became totally dairy free and gluten free over a year ago. I lost 15 pounds last year by not eating any gluten. I do feel much better but I am still 15 pounds over a reasonable goal weight and still have symptoms. I have not been diagnosed with celiac and have had to figure the out through years of trial and error. My husband relies heavily on bread in his diet and doesn’t like vegetables so we usually eat completely different meals as do my children (who are now out of the house at college). All very time consuming with a lot of inherent issues in there! People are always telling me you should make everyone eat the same or providing other helpful advice! I would love to just eat without thinking about it and worrying about my gut health or weight! Even more so, I would love to eat in the company of others without discussing my food choices! My exclamation points are highlighting a fairly constant level of frustration. On the other hand, I am really enjoying learn gin to cook and learning new techniques -when I feel like I have the time. I am enjoying new foods (who knew I could love Kale!). I am enjoying being thinner than I have in years without additional exercise. I would like to embark on an even better year of better more enjoyable eating and exercise. I would like to find some foods to bring to pot lucks, office brunches, lunches and snack fests that are 3 times as expensive as what everyone else brings or that other people might enjoy too. Any suggestions on the last points would be appreciated.

     

    •  PrettyLittleCeliac says:

      Hi Kathryn!

      Thanks for the post. I understand how hard it is to go to events and not be able to eat anything or feel left out. Did you like my facebook page? I try to post many different things on there – including foods, recipes reviews and more. Is there anything particular you are looking for?

      Rebecca

       

  •  Brittany Trentham (@batrentham) says:

    I love this post! I am gluten free and dairy free plus I have a boat load of allergies and intolerances. In fact, it makes it impossible to eat out or eat other people’s food. It can be so challenging trying to explain yourself to others and deal with cookouts and get-togethers! It does get easier over time, but frustrating nonetheless. I realized not too long ago that I wan’t getting enough protein, but now I realize I eat way too much protein powder. I’m trying to figure out what I can do to change my diet and help my hormone levels… which are nonexistent! My estrogen and progesterone are extremely low. (I am at a healthy weight, BMI, and I am working with my doctors on this) I’m so glad I found your blog!!

     

  •  Jen says:

    Thanks so much for sharing your journey and struggles. I have recently been diagnosed with IBS. Although I am not celiac (I was tested) I still seem to have issues with wheat as well as dairy. Even after removing these items, which is not easy as you know, I still have flare ups and get sick. My GI doc said it would be a long journey to figure it all out but it’s so frustrating. Its hard when you feel deprived and still don’t feel better. I know I will eventually figure it out, it’s just going to be a long journey. It really helped to come across your story especially since this has been a tough food week. Looking forward to reading more posts and hearing more from you.

     

  •  SGRhapsodos says:

    I don’t know about you guys, but I was diagnosed with celiac a year ago with antibodies and all and going so far gluten free has only helped the diarrhea. Everything else is going worse. My hormones went out of whack (I’ve been having terrible pms, depression, fatigue) everything is worse gf than it was on gluten. Sex drive is down the drain, etc. I gain so much weight before my periods that my shoes don’t fit. I tried taking ridiculous amounts of supplements and they seem to help me have a sort of normal life, but they’re not helping my hormones. I NEVER EVER EVER EVER EVER!! had these problems while I was on gluten. I was a happy celiac lol…… except for the diarrhea. Not that over ate gluten products anyway. After going gluten free I didn’t want sex with my hubs and I developed cysts in my ovaries AND my pms depression was so bad I was borderline suicidal.
    I find that I was doing better on a low gluten diet. I seem to tolerate certain things more than others (beer, corn flakes, regular soy sauce, miso, etc. are ok). Fermented foods don’t cause me any problems. Breads, pastas, pastries, are another story. They don’t give me diarrhea, but they cause the all too familiar tingle in my belly, but I don’t care about those cuz I don’t miss them. I honestly hate gluten free substitutes and find that I BINGE on them majorly. I feel full after a bowl of corn flakes, but I binge on chex. After going gluten free completely (that means cutting out corn flakes, soy sauce) my binges started becoming uncontrollable (I would binge on pop corn, fruit, dried fruit, nuts, etc.) and I would end up in more pain than if I had had a piece of cake. I don’t know if this is going to make my life worse or not, but I cannot live like this anymore. I miss the old me, and to be honest, worrying too much makes it worse on me than if I just live happy. What I like to do now is just go to that bbq at that friend’s house and eat what is obviously gluten free: veggies, fruits, and meat. If it has a sauce, I don’t touch it. I don’t let it affect me because, the more I think about it, the worse it gets. I can live without bread, but do I have to worry about the speck of malt syrup on my once a month bowl of corn flakes? I doubt it.
    Ladies you need to experiment, irregardless of what the doctor says! You need to listen to your body and give it what it needs. Please be honest with yourselves and know when something is not right, even if everybody says it’s wrong. One piece of advise I’m going to give you ladies is: TAKE A PROBIOTIC!! Kefir, align, whatever. Take it every day of your life!!! You will be able to tolerate a lot more with that. Good luck to you all and if I don’t live long…….well…… I don’t fucking know or care anymore! Peace.

     

    •  Rebecca says:

      Are you sure you actually have celiac disease? There are a lot of people who are incorrectly diagnosed. It sounds like the other problems you are having may not be correctly identified and you might want to seek a second opinion.

       

  •  Melissa Todd says:

    I can relate. I eat everything gluten free. Can occasionaly cheat cuz of the anxiety of going out to dinner, goiing to friends house to eat. Like u said worrying how my food is being made. When I started gaining weight I was ina depressed mood. Looking at magizines thinking why cant I look like that. Now i am so focused on the skinny part rather than fit and healthy. I find my self skipping meals or snack foods.

     

  •  Elaine says:

    Pretty sure I was reading my own story here. Glad to know I’m not the only one experiencing what you have expressed. Living with Celiac Disease can be so isolating and add other dietary allergies/sensitivities and it starts to feel like you’re on a deserted island. My kids are my biggest support. Most people are so clueless, just as I was before my diagnosis, they just don’t know how to react.
    Living with Celiacs is totally thought consuming. Awareness and labeling has helped but it’s still a difficult situation.
    Thanks for sharing your story!

     

  •  Tracy says:

    Without to much details I am in SAMs club right now responding to this. I too can not have wheat, dairy, soy, eggs and so much more. I eat before I go to a dinner or go to a BBQ. I work for a new company and will have a dinner with them as a after Christmas thing. And I will not be able to eat most of what is brought. I feel like a freak of nature an no one understands me. Your post hit the nail right on the head. I am sure my husband wonders if I died in here so I better go.

     

    •  Rebecca says:

      This probably is my favorite post on my blog! Thanks Tracy for taking the time out of your Sam’s trip to comment :) We are not freaks of nature, but we do have to become very confident and self aware with having these ailments. Everyone feels they need to make a comment about the way we eat and live so it’s challenging to go about our lives in our own way. I’ve always been outspoken so I never have a problem telling people to keep quiet or explaining to them why I have to do the things I do but I understand those that struggle.

       

  •  oceangirlobx says:

    Its amazing. Like you read my mind and put it on paper!

     

  •  Jodie says:

    Check out a documentary called ‘Forks over knives’, then you’ll be glad your body rejects dairy (which makes perfect sense) You may also reconsider your stance about a ‘need’ to eat meat. I’m a celiac, & since switching to a plant based diet, I feel loads better

     

    •  Rebecca says:

      I didn’t care totally for the movie Forks over Knives. I believe some of their research is flawed and biased. But I would never judge someone for eating plant based diets! We all need to listen and respond to our own bodies and that is all that really matters. I am so happy that you feel so much better!

       

  •  Lori says:

    I have Hashimoto’s auto immune disease which I just found out last year though I’ve been on Synthroid for hypothyroid for more years than I can remember. Funny thing is I most likely had Hashimoto’s all along as the hypothyroid problem stems from Hashimoto’s. Conventional doctors don’t even test for it unless you ask and when they do confirm it they don’t change your treatment. There are alternative doctors that have protocol for it but I can’t afford it yet so I am avoiding gluten as I’ve done lots of reading on the subject and 99% of the people with Hashimoto’s have gluten intolerance. From what I’ve read a large portion of the population even without Hashimoto’s have gluten issues and don’t even know it. Even aside from looking for gluten free foods when I go to the grocery store I want to stand there and cry in anguish because 99% of the so called “food” there isn’t suitable for human consumption. All the gmo’s, farmed meat and fish, cloned meat, processed garbage, unnecessary toxic chemical additives that cause food addictions. It’s really a sad state and people are oblivious to it. They don’t seem to realize that all the disease like cancer and heart disease and all the newly wide spread disorders like adhd and more are all likely being caused by what we are consuming. Our bodies are not meant to be toxic waste dumping grounds. Garbage in garbage out as the saying goes. The best I can do it suggest you eat as much organic, unprocessed food as you can. Look for local farms that sell 100% grass fed meats. Buy eggs from local farmers that let their chickens run free and don’t feed them grains either. If you can join a CSA where you buy a share of organic veggies and or meats. http://www.localharvest.org is a good source of CSA’s. http://www.eatwild.com is a good source of grass fed meat farms. Invest in some good appliances and make lots of your own foods. A good dehydrator, a flour mill, (right now I make flour out of rice, quiona, millet in my coffee grinder until I get a flour mill), a Vita Mix. Look into the Paleo diet as that is gluten free. There is so much you can find online in the way or recipes etc. Wishing everyone the best in finding what works for them and returning to excellent health!

     

    •  Rebecca says:

      Thank you Lori for your thoughtful comment! It is so frustrating. I really like shopping at Earth Fare grocery stores because they focus on great brands that don’t have all the junk in them! I actually corrected my thyroid problem with gluten removal and am happy I chose that way instead of medication. It took all year to correct, but I’m ok with that!.

      Rebecca

       

  •  martin says:

    I cannot eat any plant that is in grass family.. And I am happy with that because I feel so much better now, after 30 years of unconscious poisoning my body.. I’ve finally found it myself..

     

    •  Rebecca says:

      That is wonderful!

       

  •  sassyceliac says:

    I swear, it could have been me who wrote that first paragraph. It’s an eating disorder in itself…the obsessiveness of it. And I understand the body betrayal. For me, my antibody levels still refuse to go down (haven’t been tested in a couple months, but last time we checked)…which only adds to my obsessiveness. Because I’m doing all the right things, and yet, my immune system seems to think I’m still consuming gluten. The social challenges, the lack of spontaneity, the constant planning. Sometimes I just want to stop eating altogether. So, yes, thank you for this post. Celiac Disease and disordered eating can definitely go hand in gluten-free hand

     

    •  Marijke van Velsen says:

      Well it can take a year before your body is clean.

      But I know the obsession…Food is really an obsession since I am gluten free. Now that I live on my own work hard and have to cook dinner man…not a lot of variaty there because I want something quick. I wok a lot of stuff with gluten free soy sauce as base. You can use different vegetables and herbs so it’s quite different everytime, but still quick and quite healthy (depending on what you put in it ;-))

      Every time I visit a city or something I am looking around on the internet where can I eat. Am I sure I can trust it’s gluten free or not. Had some very good experiences so it’s getting a bit easier now after 2 years being gluten free. But it’s depending on where I am going, I know that in Germany I usually don’t have to worry. But in the Netherlands (like in Amsterdam) it’s still hard to find a restaurant with some gluten free stuff.

      But sometimes I think well my friend has a daughter with gluten intolerance and can’t have sugar. I mean that’s disaster. No gluten usually means a whole bowl of sugar as ingredient.

       

      •  Rebecca says:

        Thank you so much for your comment! Great tips!

         

  •  christina says:

    This is exactly what I’m going through right now, except I need to gain weight instead of loosing weight.

     

    •  Rebecca says:

      Hi Christina!
      Make sure you gain weight using lots of complex carbohydrates like sweet potatoes, brown rice and quinoa along with healthy meats and veggies. That way you can make your body strong too!

       

  •  Kathy says:

    This all sounds so like ME… I have been dealing with celiac disease since 1994 and there are many new foods that fit into the gluten free diet but I am a widow and living alone makes life difficult. I am not looking for a pit party but cooking for myself is boring beyond belief and eating out is expensive to say the least when you need special foods. I am getting to the point that I just don’t care anymore….I get so worn out trying to figure out what I should or shouldn’t eat so reaching for a quick snack doesn’t fit into proper balance for me. My body is just tired all of the time.. I have gone through liver transplant surgery in 2000 so with the combo of drugs I need to take and figure out how to eat healthy…well just wears me out.. Thanks for sharing everything on your site.. it does help… Hugs.. Kathy

     

  •  mary says:

    I also have celiac and food is a constant battle with me. I have low iron and b12 and food isn’t as satisfying as before. I try to b good with snacks but sometimes I fall off the wagon. So far out of my family of 5 I am the only one diagnosed so I dislike cooking for me. Also what makes it difficult is the prices of GF

     

  •  Michelle says:

    I know what you mean. I too lack protein and other good vitamins at times. Those gluten free cookies and pretzels are a quick grab. I notice my hair and nails are not as nice as they used to be. Hang in there, we all probably need to have that salmon and rice dish in the picture all day every day. And I wish I looked like your before picture instead of the weight I am…..200 plus.

     

    •  Amanda YOder says:

      Yes it is a little hard to hear her not be happy with her body when she’s thin, fit, amazing!

       

      •  Cynthia says:

        I think that makes it even harder though. I am pretty fit (at least I was before I was too sick to exercise) I’m 5’7″ was 145lb. I lost 20 pounds being so sick and not being able to eat anything at all. I think I’m too skinny and I feel terrible every time I eat something. My friends are envious of my body because I’ve had two babies and look “great”! It makes it hard to get support that I need to get through this emotionally when everyone keeps saying, “wow, you look great, I hate you!” I don’t feel great.

         

  •  Amanda YOder says:

    Glad to hear I’m not alone. I do find I’m guilty of gluten free snacks instead of spending all the time to make a good well balanced meal sometimes, because there is no quick or premade options like there was before I had to go GF and I’m often out of time or energy!

     

  •  mrscynthiaallen@gmail.com says:

    Thank you for posting your struggles. I have been having a tough time not getting depressed about food. I started out with gallbladder attacks and they found celiac by accident. The picture all came together, but the initial treatment for gallbladder made me so sick I couldn’t eat anything without IBS or leaky gut symptoms. I am improving, but still can’t eat gluten, soy, dairy, fructose, beef, fatty foods. Talk about having a hard time going to parties or staff potlucks. Or wanting to cook anything at all. Very frustrating!

     

  •  Jodie says:

    Hi, I was diagnosed with celiacs desease as well as ulcerative colitis over 7 years ago. Since then I have struggled with many problems, & I have suffered through stages of being violently ill, even having to leave a number of jobs.
    I thought I would share a few things that I have learned over the years…
    Firstly, I now refuse to eat out (personally I make no exceptions) However if you really want to, I would recommend only ever eating at a venue that is 100% gluten-free.
    My diet has also shifted first to vegetarian, then to vegan, & I now have less trouble with my weight, as well as bloating, tiredness, etc.
    I also highly recommend green smoothies, I have one every day, & they make me feel amazing. It’s also a fail-safe way to get some important nutrients into your diet that are easily digested & absorbed .
    I hope this info is helpful!

     

  •  Stacy says:

    It is fascinating to hear everyone’s struggles. Thank you all for sharing!
    I’m at the beginning of this new gluten free life. I think I’m still so focused on WHAT? I can eat that I haven’t moved to the angry part. It was an accident that I was diagnosed. I was deeply disappointed with the “nutritionist” that my doctor sent me to . . . I learned more from a few hours on the internet. She basically gave me recipes to replace bread and gluten filled items, instead of really talking about how to move to a naturally gluten free diet. Luckily, I have an amazing husband who loves to cook. He makes the most incredible things out of protein and vegetables. When he is around, I don’t feel deprived. The minute I have to fend for myself, I get nervous.
    The thing that I am finding most frustrating, is that I’ve been gluten free about 2 months and I don’t really feel that much better. My energy is better and I did get “glutened” once from a restaurant. It was horrible – 6 hours of intense stomach pain and migraine and then three full days to recover. I am understanding the danger of eating out and have only two places that I haven’t made me sick.
    I keep searching for the answer of WHEN am I going to really feel better? How long will it take and am I doing enough?
    I realize this is a rather random post, but I would like to be a part of this community and really appreciate everyone’s honesty and openness. Thank you Rebecca for bringing us all together.

 

 

 

What is Hashimoto’s Hypothyroidism anyway?

Hashimoto’s autoimmune Thyroiditis – such a long name for such a little part of your body controlling so much!

According to Dr. Aukerman, Hashimoto’s disease is a chronic thyroiditis that causes more than 80% of all hypothyroidism in the United States. It results when the thyroid gland has lower or slower functioning than normal throwing your entire body off balance.

One of the ways you can get Hashimoto’s hypothyroidism is from the autoimmune response due to gluten in your small intestines. The onset of the disease is very low and more frequent in middle age women and families with a history of thyroid disease.

Summer 2011, I could tell something was wrong with my body. I felt exhausted, irritable, was gaining weight, extremely dry skin, hair and nails and the amazing thing was how much hair I was losing. Even my husband noticed how much was in the drain after I took a shower and my hair stylist would ask if I was under a lot of stress showing me the aftermath of a hair coloring.

January 2012 was my first appointment with Dr. Aukerman. You will hear me talk about him frequently because he impacted my life so much and finally gave me some hope with why my body was failing me at only 30 years old. When he walked in the door, he did an initial once over and said you have a latex allergy, Hashimoto’s Thyroiditis and most likely Celiac disease.

He observed that my thyroid was swollen in my neck and tender to the touch. I just always thought that’s how it was supposed to look and feel.

Your thyroid is the pink part.
Your thyroid is the pink part.

Frequent signs and symptoms of hypothyroidism: Intolerance to cold, difficulty concentrating or thinking, weight gain, fatigue, constipation, joint stiffness, dry skin, hair loss, heavy or irregular menses, facial swelling, enlarged neck and/or presence of a goiter.

thyroid_gland

According to MedicineNet.com,  there are more serious consequences to having untreated hypothyroidism-

“As hypothyroidism becomes more severe, there may be puffiness around the eyes, a slowing of the heart rate, a drop in body temperature, and heart failure. In its most profound form, severe hypothyroidism may lead to a life-threatening coma (myxedema coma). In a severely hypothyroid individual, a myxedema coma tends to be triggered by severe illness, surgery, stress, or traumatic injury. This condition requires hospitalization and immediate treatment with thyroid hormones given by injection.

Properly diagnosed, hypothyroidism can be easily and completely treated with thyroid hormone replacement. On the other hand, untreated hypothyroidism can lead to an enlarged heart (cardiomyopathy), worsening heart failure, and an accumulation of fluid around the lungs (pleural effusion).”

So, now that we know what this autoimmune disease is – how do you diagnose it? I did a little bit of research online and found labtestsonline to be the best source and easiest information on testing for Hashimoto’s.

Tests

The goals of testing include detecting thyroid dysfunction, diagnosing Hashimoto thyroiditis, and monitoring Treatment.

For monitoring thyroid function and hormone production:

To help diagnose Hashimoto thyroiditis:

  • Anti-thyroid peroxidase antibody (anti-TPO, see Thyroid Antibodies). This test detects the presence of autoantibodies against a protein found in thyroid cells. A high value usually indicates autoimmune damage to the thyroid due to disorders such as Hashimoto thyroiditis and Graves disease.
  • Antithyroglobulin antibody (TgAb) — if positive, may indicate Hashimoto thyroiditis; while thyroglobulin antibodies are often positive, they are not as sensitive or specific as anti-TPO so they are not routinely ordered.

My TSH levels came back high on my first test around 4.976. To put that in reference, it should be between .5 and 3. My PTH Intact also came back high at 37.5. This level should be around 14 or less.

Treatment:

The doctor has not put me on thyroid medicine yet because my blood levels dropped after my second testing in July 2012. They are still a little elevated, but they are going down at a great pace without taking any kind of medicine. This is because I’ve tried to control my gluten intake as much as possible. By stopping the autoimmune response of gluten, my thyroid doesn’t have to work as hard and the levels are going down.

Synthetic hormones:
This usually involves daily use of the synthetic thyroid hormone levothyroxine (Levothroid, Levoxyl, Synthroid). Synthetic levothyroxine is identical to thyroxine, the natural version of this hormone made by your thyroid gland. The oral medication restores adequate hormone levels and reverses all the symptoms of hypothyroidism.

You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website.

Is a Food Latex Allergy contributing to your auto-immune problems?

Is Avocado my forbidden food even more than gluten?
Is Avocado my forbidden food even more than gluten?

I love Avocados. Growing up I didn’t particularly care for them but as I’ve gotten older, they are my love. I put them on everything. After all, they are heart happy foods right?

Wrong.

You can imagine my disappointment when Dr. Aukerman told me that I not only have a gluten allergy and have celiac, I also suffer from a latex allergy found in foods. He knew immediately from looking at me. He handed me a mirror and pointed out that the whites of my eyes were actually off white or gray and there was swelling around my lips. I also had a latex allergy on my chest – little white lines of allergy horror. I thought it was just my body. There were other things but these were the most obvious. Then he handed me this sheet of paper along with everything else in my packet that day, which also listed the other latex ridddled food I should avoid.

From Better Health in 120 days by Glen Aukerman, MD.
From Better Health in 120 days by Glen Aukerman, MD.

Eating foods that with latex-like proteins exposes people suffering from those allergic to latex. Apparently, our bodies can’t tell the difference between latex found in medical gloves and kiwi. Since I’ve cut out gluten, my body has become much more sensitive to these foods and the effects are more serious each time I eat them. (similar to gluten) Sometimes I just think my body is revolting against me and my brain lives in another world.

You should avoid the following foods if you have a known rubber latex allergy or a latex rash on your chin, cheeks and lines on your neck and chest.

Say Goodbye to avocado, banana, kiwi, chestnut, raw potato, tomato, stone fruits (peach, cherry), hazelnut, melons, celery, carrot, apple, pear, papaya and almond.

greer_latex_cross-reactivity
Foods to avoid with latex allergy

Ethylene is a gas used to quicken commercial ripening can increase the reaction in some people so it’s best to buy these items when they are locally grown and in season if you will have them at all. Companies frequently use this gas in bananas.

You never know what is going to go on with your food when it is being processed by large companies. Have you ever seen the lettuce video on YouTube where they actually physically peel plastic layers off the leaves?? Here is the clip – It’s really gross. They spray fruits and vegetables with that stuff so they stay “fresh” and look ripe in the grocery stores. It allows them to last longer than locally grown, fresh fruits and vegetables.

I will admit, I’ve been a naughty girl. Since I’ve cut gluten foods from my diet, I’ve been relying more on these forbidden fruits and maybe it’s about time it caught up with me.

It started Friday afternoon on our long drive back from Hilton Head. I thought I was just stiff from being in the car for 12 hours. My back ached liked crazy, I was abnormally sore from my workout the day before and my neck was throbbing with severe tension pain.

My fingers are the first to give way that something is wrong. It’s like they move in slow motion and I can barely type. What the hell is wrong with me (I think to myself), I’m only 30 how could I possible have arthritis like this.

My lips starting tingling too – it’s just from being in the sun I said all week. (knowing very well what Dr. Aukerman said during my first appointment)

I know I ate guacamole at lunch that day. But, I didn’t think I’d pay for it like this.

Fast forward to today. I ate Chipotle and yes, I devoured some guacamole.

img_3602
All day. My. Joints. Ached. I took the dog to the park and my knees throbbed just walking 10 minutes to the spot where he goes swimming.

Come on Mom! Throw me the stick...
Come on Mom! Throw me the stick…

My lips are tingling and I can see the red lines around them like that time at Dr. Aukerman’s office.

I can barely type this blog post because my fingers are so stiff and hurt so bad.

Conclusion: I should stop eating avocados.

But why? I love them so much. It just seems like my whole world is crashing down just because of another set-back, another list of foods I can’t eat anymore. It isn’t fair. I want a freaking bagel or a sandwich with everyone else. Why can’t I just have my banana and eat it too?

Have you struggled with these foods?

Do you have a latex food allergy? Leave a comment below and tell us about it….

Be Happy, Be Healthy

Rebecca

Want to learn more about latex in fruit?

Latex-Fruit Syndrome and Class 2 Food Allergy

Latex Allergy Blog

American Latex Allergy

Food Allergens

Comments

  1. Amanda Yoder says:

    I don’t think this is my issue, but I have a rash on my stomach–a stubborn one, so I have to ask the doc what foods might be causing it or it’s gluten in my soap, not sure yet. It is frustrating, first celiac, then lactose-intolerance, and i’m extremely sensitive to acids like tomatoes too! So very frustrating when it feels like so many foods are taken from what I can eat. However, when I look at my immediate family for the last several generations, they were farmers who ate grassfed beef, free range eggs, and potatoes A LOT, which salad/vegetables from the garden and only the fruits occasionally that grew near them…rarely wheat because they had to buy it and raw milk—it kind of reflects what’s left so maybe it’s what my body is best adept at handling (this is a problem frequently left out when saying the healthiest way is for everybody to “be vegetarian like Indians” or “eat Mediteranean” or “eat fish and seaweed like the Japanese cuz they live a long time” when studies have found that Caucasians don’t absorb nutrients from seaweed at all compared to native Japanese.)

     

  2. Jenny says:

    OMG! This is crazy! I have been battling a really bad allergy reaction in my skin which covers my mid section, arms and hands for close to 2 years and now just 2 wks ago started on my face! Have been to 4 doctors and no one could tell me what is except its allergy related. Well 3 months ago I ran into a person who looked at my arm and asked me what the hell was wrong with me and suggested it might be gluten. At that time I only ate wheat products (bread, cereal, pasta etc). I gave it all up and my skin magically began to clear up and the itch to go away. At the same time I started a hormone (latex) patch treament and also got hooked on sweet potatoes, avocados, bananas and strawberries, eating these everyday and boom, the itching and red spots came back with a vengeance. It was so bad that on Monday I had to go to my dermatologist so she could give me a Keladon (sterocrotisol) shot and cortisone cream. Still not helping. So yesterday I went on line to the website of a new doctor I am seeing on the 30th and there I found the information about latex. I could not believe that this is what has been close to driving me insane. And of course, I have been overdosing on the foods listed here!!! I tend to eat the same things every day. I even just recently gave up milk, cheese and eggs thinking that could also be affecting me, but still there has not been any relief. Yesterday I removed my hormone patches and called my doctor to get other treament. Today I had for breakfast a cereal that is made of brown rice, no bananas or berries, with rice milk! Just had for lunch quinoa with plain broiled chicken. Don’t know what I will be eating for dinner! Feeling much better, though still have a little bit of itching but my red areas are starting to get better. I was at the point of embarrasment and having to quit going to the gym because my body looked like a checkers board and the sweat would drive me crazy. I am now hoping that by eliminating all of these foods and having the doctor confirm that a latex allergy is what I have, I will get my life back. I do know it is going to be hard because I am a very picky eater and I loved all the foods on the list. Will see…

     

  3. Amy says:

    Sister, I feel your pain! Literally! I’ve been suffering from latex food syndrome for years and only in the last couple of years have I really felt the BIG effects. Forget the list of foods I can’t eat. That’s most everything, especially if any part of the plant bleeds white when you cut into it. Prepackaged foods are out of the question because of the additives and thickeners. I have a list of 32 foods I can eat without any reaction whatsoever. I’m a Chef. Food is my LIFE and it’s a painful HELL every time I decide to eat just a little something off my list. I carry an Epi-Pen with me and keep one in the office because I just never know when one of the off-limits foods will send me to the ER in respiratory distress.
    These are the things I CAN eat: Grass-fed beef, bison, elk, venison, fish (no shellfish-allergic), wild turkey, organic chicken, antelope, eggs, cooked spinach, well-cooked collard greens, cooked onion, garlic & shallot, wild black rice, blueberries, grapes, wine (thank God!), red wine vinegar, olives, olive oil, capers, cheese, milk (very little), frozen yogurt with no thickening agents, plain yogurt, organic cooked dates, honey, cooked mushrooms, coffee, tea, cocoa powder.

     

    • Maria says:

      Amy, I think that I’m almost in your same diet, thanks for telling me of the cook mushrooms, cause I was having a little pain, on that, so I’m gonna cooked it we’ll done! Because , the way my allergies reacts, like I’m having a heart attack , lm treating it like is a acid reflux, so since I’m drinking charcoal activated, is muuuuuuuuch better, you can find it in vitamin shop

       

  4. Rebecca says:

    I recently just learned about latex allergy and foods. I have been allergic to latex my whole life and never clued into this. Over the passed 2 years I have experienced many different health problems and have gone for thousands of test. My abdominal area swelled up so big within a 3 day period that it causes me to gain 20lbs in those 3 days! after that i started waking up with large swollen areas on either my forearms or my legs. They would be large, hot and very itchy. Doctors thought it was a million other things, like an allergic reaction to a bug bite and never put two and two together. But after hearing about this and researching it more it all makes sense to me! Im also a vegetarian so I eat a lot of these foods that are sensitive to me now. Im starting to narrow my options down myself without my doctors help. Im also studying to be a holistic nutritionist so doctors opinion i am kind of biased too. Has anyone had any of these symptoms? I have read that there are different degrees of it.

     

  5. Hillary says:

    I am so excited. I have been gluten free and dairy free for years. In the last two years while breast feeding my son, I’ve had to eleminate soy, along with many latex foods. Sometimes when my husband and I drive past restaurants we joke, wouldn’t it be fun to eat out….then I say, ‘yeah, remeber how sick I was when we ate out?’ I dont miss my gut issues, my rashed hands, my hair falling out or those God awful stomach pains that would render me immobile. I do however miss all the new recipes we used to try. I often find myself staring in the refrigerator wondering ‘why hasn’t someone written a cook book for this group of allergeries?’ I am so EXCITED to have found your website! It may just put the creative spark back in my cooking. :)
    Thanks,
    Hillary

     

  6. Heather says:

    I really wish latex fruit syndrome would go main stream. It’s very difficult when people don’t understand it. I ate the comment “I never heard of anyone being allergic to bananas! That is just crazy”. Yes people are allergic and it will kill me and my son, is what I want to scream! LOL
    It’s very frustrating with the school too. They will take out peanuts but we had to fight for years on the bananas. When my son and I both had to use a epi pen after being in the school from bananas being served they finally listened. My husband can’t even eat them because if he kisses one of us without washing his mouth or hands well it is off to the ER.
    I can’t have any foods on the list which is a lot bigger than the one above now.

    I get why people don’t understand it because I don’t always. Like I didn’t know about the hair falling out, joint pains and the rash just staying around. I thought I had to have a reaction to where I itched bad, with a rash and breathing problems. This explains a lot lot more now.
    I have been diagnosed with Lupus, fibromyalgia, & now looking at MS. I wonder if it isn’t just all the latex fruit syndrom. I say this because they go back and fourth on the lupus every few years.
    I have been knowingly fighting this for 10 years but I have been allergic to latex since birth and strawberries us other foods off and on.

    If your just starting out in this or have had it a while remember it isn’t just foods you have to worry about. Shampoos is a BIG ONE for us. There is soy, banana purée, but oils, sunflower oils and other things on the lost. Lotions, skin care products, soaps, hair sprays and more. A lot of meds have soy protein has a binder, mostly capsules so you have to check the inactive ingredients on these things too. A lot of the natural or herbal meds use soy or sunflower.
    Be sure and look of the scientific name to all of these foods too, I can post a link on a bit if you want. I found out about my banana allergy by getting sick every time we went to my friends for dinner. She used a lot of marinades and every one had a banana purée in it as a thickener (it is made in a powder form too and used in soaps and candies). You have to get to know these names to stay safe or to keep the kids safe.
    Epi pens are always a great thing thing to have on hand just in case. You never know when that eating it one more time will be the one that gets you the most. That is how I lived for years, eating it anyhow and taking benadryle. Then my dr told me every time I eat one it makes me more allergic and some day I want have help to get to the ER. It took that happening for me to open my eyes.
    Well I didn’t know that the names where not listed has we “know” them Normally & I just looked at the allergy list not the whole ingrident list. After 3 bites I was on the floor not able to breath. Thank goodness my 4 year old was home due to a ice storm! He called his daddy on my ipone, ran across the field in his undies and no shoes to get our cop neighbor in the ice of all things. He saved my life! The cop gave me the epi pen I had manged to get out and throw toward him under his feet, I couldn’t talk at all. The ambulance came and gave me another shot plus IV meds. I couldn’t move at that point.
    Anyhow I told you that part to let you know how bad or could be to just keep eating these things. It really effects is worse each time.

    Thank you for spreading the word about this and I hope others do too. ;)

    It is a very hard and frustrating thing to have because it changed your whole lifestyle in the blink of a eye.

    ((As I was typing this my son had a reaction to a candy cane… It has sunflower oil in it and I had NO IDEA. I had to look up the manufacturer to find it out)) I’m
    Not proof reading due to this I need to go watch him but I had to finish this post I started 2 hours ago… Much love and hugs to all who deal with this.

     

  7. Anita says:

    Wow~! I am allergic to latex and really only thought about gloves and condoms. I had no idea it extended to foods and therefore ingredients for skin care. I’m very happy to learn this since I’m a skin care formulator~! No wonder there are so many unexplained reactions to different creams while everyone else loves them.

    I’m so happy to find this info. Thank you so much for posting it~! Now all I can think is this is going to be a TON of work. Not only figuring out what I can eat, but I’m going to have to change some of my formulas for myself and you~! I found this by searching the link between latex and shea butter (yes, something else we’re supposed to avoid).

    @Rebecca YES! My bloating is ridiculous~! I look like I’m 6 months pregnant after eating certain foods. I had gained a ton of weight, then lost 65 lbs over 2 years and have now gained back almost 50 lbs in about 3 months after becoming a vegetarian. Now I can see that a lot of what I’m eating is on the no-no list – not to mention the great things I’m using on my skin – which are apparently related to latex, Ugh~! I’m so tired from this~!

     

  8. Anita says:

    Here is a research sheet about the link between latex allergy and shea butter:

    http://latexallergyresources.org/sites/default/files/newsletter-attachments/The%20ALERT%20Dec%202012.pdf
    Anita recently posted…15gm Vitamin C Ester Ascorbyl Ascorbic Ester C PowderMy Profile

     

    • Anita says:

      Here is a research sheet about the link between latex allergy and shea butter:

      http://latexallergyresources.org/sites/default/files/newsletter-attachments/The%20ALERT%20Dec%202012.pdf

       

  9. Bee says:

    Excellent blog post! I get the same inflammatory response too from these foods. Avocado and kiwi are especially bad. Do u know where cucumber lies on this spectrum bc that’s another fruit I notice issues with

    Lastly, do u experience gi issues when u eat these foods? What has been ur experience?

 

 

Gluten Poisoning Symptoms and Recovery

It’s 2 am on September 3rd, 2012 and I am wide awake with a horrific stomach ache. It started after my lunch out today at a local restaurant known for having a “gluten free” menu. My review is coming up this week but if you have celiac or severe gluten intolerance I would avoid it at all costs.

Gluten poisoning. What to say about gluten poisoning? It is awful. Just dreadful. Miserable.

Imagine having a stomach virus that gives you diarrhea along with a brick like feeling in your belly without being able to think or sleep. Eating gluten frequently causes a “brain fog” which is similar to having lack of focus. Primarily for me its because I just keep thinking about the horrible pain in my belly. It’s crippling.

The longer I go without gluten in my system, the worse the symptoms are when I do consume the little jerk. I can feel it in my joints. As I type this email, my fingers are throbbing. I can feel my heart beating in my stomach. My head pulsed all day from a low level headache and now I’m wide awake with insomnia from my stormy gut. My stomach is so bloated I look like I’m 4-5 months pregnant.

This is an allergy. My husband is allergic to tree nuts and swells up with hives and could die. My allergy is a slow painful death. Celiac causes tons of other problems for people including hypertension, hypothyroidism, heart complications, behavioral problems, sleeplessness and even cancer. For years I’ve lived with numerous under lying symptoms of celiac but because I ate it every day, my body was in a constant state of turmoil which apparently I just came to adjust to and go on with my life.

Gluten poisoning is different. Instead of a little stomach ache all the time, this is one big, giant, crippling stomach ache that lasts for 2-3 days.

Several weeks ago we went to a Cincinnati Bengals game and kept walking by the concessions with the fresh, hot soft pretzels. My total weakness. My favorite food. I could eat them every single day.

I rationalized eating one that we usually go to 2-3 games per year and if I just let myself eat 1 pretzel at the games, I would satisfy my craving of foods I’ve been forced to deprive myself of for months now.

I ate the pretzel. It seemed like the most delicious pretzel I’ve ever consumed. I ate it in the most miniscule bites to make it last what seemed like forever. It was so good.

An hour later, I was fine.

2 hours later, I was fine.

This was exciting. I beat the system! I could enjoy a pretzel every once in a while and be fine.

Boy was I wrong…..

3 hours later we were about 10 minutes from home and I could feel it. My stomach started to gurgle. My head started to sweat and my heart started pounding. I know that feeling and we had to get home quick. I ran in the house from the driveway to use the restroom. Just like old times I thought to myself. Oh well, I can handle it. I lived with it for 15 years.

Little did I know what was going to happen that week. Friday night was the game. Saturday I felt like a freight train hit me. My fingers were totally swollen and my joints ached. I was exhausted and had a horrible stomach ache. Sunday was just as bad. Monday, Tuesday Wednesday – by FRIDAY I started to feel better. It took me a full week to feel back to normal. I ate fruit bars for almost the whole week. No appetite. Frequent restroom trips. It was just awful.

This was the first time I purposefully ate gluten since February. I’d gone 6 months without consuming a large amount of gluten. I’m sure I’ve had some in the mean time with cross contamination but nothing like this.

The only thing that seems to make my stomach feel better is the natural sierra mist. There is no amount of medicine, vitamins or foods that make your stomach feel better after being poisoned. You just have to stop eating gluten again and wait for your body to heal. Just take it one day at a time. If you have to rest, you have to rest. It’s very similar to having the flu. Your body will tell you when it is time to get back to the normal routine.

I’ve been reading all these things on the internet in blog posts and random other websites. They don’t work. Waiting it out and resting works. Drinking soothing tea might ease your stomach ache but it won’t heal your belly or the damage done to your intestines. Have you ever tried to sleep with a horrible stomach ache? It’s nearly impossible. When I eventually get to bed tonight, I will inevitably lay there tossing and turning until I have to get up in the morning.

Things will get better. I will get smarter about food choices and be more careful about going out to eat. It’s very difficult to trust that restaurants can fully protect you and understand the severity of gluten poisoning. It’s ultimately my responsibility to protect myself and in the future I’ll do a little more research before heading out to eat just because they have a gluten free menu. You live and you learn. The most mistakes I make, the more educated I become on this topic!

xo

The Pretty Little Celiac

 

  • Cindy G. says:

    It’s really too bad that you can’t enjoy a meal which you think is gluten-free without being worried about going through what you just described. It’s unfortunate that you still have to thoroughly research the menu so that you can be sure you aren’t eating something which makes you ill. Do you think you’ll let the restaurant management know about this, so that they’ll examine their menu more closely? I really hope this doesn’t happen again. Take care, and I hope this runs its course quickly.

     

    • PrettyLittleCeliac says:

      Hi Cindy!
      Thanks for the comment and the well wishes. I am going to send them an email. The owner of the place we went typically has very safe food practices and I’ve never gotten ill at any of his other places. I think they should know about this event because they are gluten sensitive. Hopefully you enjoyed my blogs! I have so much more to say on Gluten and Celiac.

      Rebecca

       

      • Betsy says:

        When I go out to eat or go to a party I only eat what is suppose to be gluten free. Most people try to make gluten free foods for me, but mistakes are made. So to be safe I take two Gluten Cutters . You can find them at Walmart’s, Walgreens and CVS makes there own brand of Gluten Cutters. Gluten Cutters are made by a company called Healthy Digestives. They work for me. I am 58 years old and was diagnosed with celiac as a baby and then again 20 years ago after having my babies. Believe me it only takes crumbs to make me sick. My daughter is also celiac and finds that if she takes two Gluten Cutters before eating a meal of gluten she is fine. I am not brave enough to try that. I have been on a strict diet for 19 years now and it is wonderful to finally have something to keep me well so I can now enjoy going out to eat without worries.

         

  • Amy says:

    Rebecca,
    I just wanted to thank you for your blog. I just found out this past summer I have celiacs and have been battling with stomach pain my whole life. Reading your blog felt like I was reading my own life story. I’ve gone through the same things when it comes to my battle with gluten. I’ve also started to notice my stomach doesn’t seem to like lactose either. Did you get tested for that when you noticed? I have tried to completely cut gluten out but I’m still having stomach problems and I think it’s the lactose to blame. Your help is greatly appreciated!
    Thanks so much!
    Amy

     

    • PrettyLittleCeliac says:

      Hi Amy-

      I’m so glad you found my blog because I wish I had a resource that I really liked when I was diagnosed. I’m continuing to add content each week so hopefully we can continue to share stories & I can be a support to you.

      The lactose thing is new since I really focused on eating gluten free. We cook a lot more at home and that allowed me to eliminate questionable food and food handling. I noticed it more which I’m finding is common. I’m actually in the middle of writing a blog post about my observations with lactose. My suggestion is to go totally gluten free, control what you are eating and then try different foods and see how you feel.

      I find that I actually like the lactaid milk and lactose free sour cream better than the original.

      Did you like my facebook page? I post a lot In there too!

      http://Www.facebook.com/prettylittleceliac

      Feel free to email me with anymore questions!

      Rebecca

       

  • Mandy says:

    I have to say that its nice to see that someone else describes the same symptoms, the only difference for me is that on that three hour mark, I vomit off and on for about two hours, I can’t get up, I’m in the fetal position, and feel like I’m dying. It happened today, I ate at my fave restaurant, which I’ve never had issues with before, and was poisoned. :( After throwing up every single ounce of anything I have in me, my stomach ache will remain for a few more hours but the body aches are soooooo terrible! I feel like I got run over! I don’t cheat on purpose, in fact, I’ve been gluten free for probably six plus years, and I had almost forgotten (almost, mind you) how bad it feels to have gluten in my system. None of my friends or family have Celiac so they even though they see the outcome of accidental intake with me, they can’t understand the intense, horrible feelings that accompany it. As much as I wish no one suffers the same fate as me, it was nice to read your blog and see that someone does understand what it feels like. Thanks!

     

    • PrettyLittleCeliac says:

      Hi Mandy-

      Thank so much for your reply. I struggle as well with people thinking it is just a “stomach ache” or that I can just flush it out of my system. I get crazy headaches and neck pain also and I’m noticing the symptoms getting stronger the longer I go without gluten. I’ve also noticed that some things cause a greater reaction than others and I’m trying to pinpoint what that is so I can know the main triggers. I started the blog for that exact reason, people like us that other people think are over reacting about the symptoms. They don’t realize how serious it really is to be “glutened.”

      Thanks for stopping by and I hope we can share other stories as well. If you have any great ones, don’t forget to enter my contest!

      Rebecca

       

  • laura west kong (@laurawestkong) says:

    Wow, you’re brave to eat that pretzel! I haven’t been able to bring myself to eat anything like that. Too scary. Hope you’re feeling better!

     

  • celiacandallergyadventures says:

    I just had my first experience with this! I have no idea what I accidentally ate, because I’m extremely careful. But all these symptoms that had gone away after going gluten-free, suddenly came back with a vengeance. Not just the stomach pain, but eczema, itchiness, irritability, heartburn, headache, feeling mentally “foggy,” … It’s so much worse when you go without it for a while and then ingest it. You’re right, I think our bodies do adjust to it – kind of like alcoholics who are drinking a lot and often – they develop a tolerance and can drink large quantities. But if they cut it out completely and then have it again, it will take much smaller amounts to reach the same effects.

     

  • Emily R Weidenbach says:

    AHHH! I feel you so much! It is the worst thing in the whole world, one time I ate pizza from a local pizza place. The manager swore it was gluten free…well my stomach told me it was not within about 10 mins. Worst feeling ever and for me it lasts for weeks. *hugs*

     

    • PrettyLittleCeliac says:

      Such a high rate of cross contamination at pizza places if they don’t handle it properly! All that flour flying all over the place….

       

      • Emily R Weidenbach says:

        Yeah he actually gave me a regular pizza. I called the coroprate office and they delt with it. It was scary!

         

  • Sarah casebolt says:

    I feel the same way and have all weekend.
    I ate something with gluten but no idea what.
    Tomorrow I have to work, be a single mom as always and deal as well as dig deep. Sitting here near tears. I with you…tummy aches and all. Feel better friend.

     

    • PrettyLittleCeliac says:

      Sarah –

      you are a rockstar :)

       

  • Peggy Kinter says:

    I break out in blisters on my face, and my arms,I hate this Celiac so bad…thank you for this website you have brought to us

     

  • Tracey Black says:

    Thanks for sharing your story. My husband is allergic to gluten, soy, and eggs – and has to be on a candida-free diet, which is basically no starch. It’s really harsh. He didn’t have symptoms like this but he had chronic fatigue and arthritis flare-ups. He’s been on this crazy diet for about 6 weeks now and he’s still not feeling better, but his doctor said that it could take up to 6 months to feel better. It’s crazy how closely tied our stomachs are to the rest of our body.

     

  • pam says:

    Rebecca
    Thanks for all your post. I finally found someone who seems to be as sensitive as I am. It usually takes me about a week to settle back down and I blow up to about 7 months preggers! lol I am even starting to have problems with preservatives in meats bought at the grocery store. It took over 6 yrs for them to figure out what was wrong with me, and many many medical test and of course as much money as they could get from me since I do not have insurance. I had gotten so bad that before I was even 40 yrs old a neurologist told me to quit my job and go file for disability that I was permanently handicapped and it would only get worse with time. When told there was no sign of a reason for nerve damage, but mind you I was told I had suffered 2 small strokes; hello that I didn’t even know about, that it was all a nutritional thing, I left his office went home and ordered a Bow Flex machine and within 2 months was off the cane. I still can’t seem to get past the 100 lb mark which is sad since I am 5’9″ tall. My thought was that if I work out the body would demand the nutrition it needed to survive and for a little bit that worked. But constant workouts are not something my body can take, with the joint stiffness and the osteoporosis that at age 42, they tell me my bones are that of a 70 yr old as well as my intestines, I have had to cut back on the workouts.
    I have found my biggest problem is finding good things to eat since most of my life I ate things out of a bag served over a counter, a box, or a can. So anything you find especially appealing please feel free to share with those of us always looking for something good GOOD being the key word there and that doesn’t cost a small fortune. Which I don’t know if you have noticed but gluten free is extremely expensive. Or maybe I should say the gluten free baked goods are expensive. And the better they taste the more expensive they are. It’s like a big conspiracy to keep the american public eating foods that we have manufactured to turn on and destroy our bodies. I am trying right now to convince myself to buy a loaf of paleo coconut bread that runs $11 a loaf! Anyway don’t let me get started on that end of things. I just wanted to say.
    Thanks for your sharing it is VERY helpful and I look forward to reading more.

     

    • PrettyLittleCeliac says:

      Welcome Pam! I feel your pain (literally & figuratively). Part of my problem is that I hate cooking & I don’t want to buy a ton of ingredients – which most of these gluten free cook books require! I’m eating pretty plain these days….

       

  • brenlee129 says:

    I have been glutened at restaurants that claim to be gluten friendly too. The sad part about it is when I’m home sick all week I wish I had eaten Chick Fil A or my mom’s lasagna instead. At least I would have enjoyed being glutened! Instead I had something “gluten free” that tasted like cardboard!

     

  • Kim Reichert says:

    It’s comforting to hear I’m not the only one who “tests” my tummy on occasion. I will be doing really well and then go to a dinner at friends or one of my grandkids birthday parties and think “I’ve been really good so one little piece of cake or cookie won’t kill me”. And like you, within 6-8 hours I am stuck in the bathroom with horrific stomach cramps and diarrea. It will last for days. I use to try to blame it on my arthritis meds or something else. Now my husband will say ” don’t do it, you will be sorry”. He is my voice of reason! I will also get terrible migrains and my arthritis will flair up and I just want to stay in bed and pull the covers over my head for days! Then I beat myself up for being soooo stupid. The funny thing is, I was tested for Celiac disease and the results were “inconclusive”. Then why does this happen every time wheat touches my stomach? I also sometimes have problems with dairy products. Not always but sometimes it causes the same symptoms as wheat. I have decided that no matter what the tests show, my body knows best! While staying off wheat and dairy won’t cure my degenerative arthritis or nasal allergies, it certainly helps my symptoms and allows me to enjoy playing with my grandkids, riding my horses, walking my dogs and waking up to a good day. Thank you so much for your page!

     

  • PrettyLittleCeliac says:

    Hi Kim!

    Thanks for stopping by! I’m glad you are enjoying my blog and it’s comforting for me as well to know I’m not the only one that does this!!

    Rebecca

     

  • Kathy Mc says:

    I am extremely sad today as my diagnosed Celiac 5 year old granddaughter has just spent the last 4 days with extreme vomiting within 6 hours (10 times the first 24 hours) and diarrhea, and complete lifelessness from Reese Valentine heart candy that I bought for her during a Valentine celebration at my house. Reese has been my go-to candy for her for the last 4 years since she was diagnosed with Celiac disease at 22 months old. I found out right away that Reese peanut butter cups were safe and Gluten free and I have been so comfortable with that fact. I have always bought the Easter eggs and Christmas candy for her too. There is nothing on “this” package label that states “contains wheat/wheat flour.” After researching what went wrong, I read Hershey online that the seasonal shapes are not guaranteed gluten free. I can’t believe this. Why would they ever make some Reese cups gluten free and then “fool” us by not making all of them gluten free? I feel totally mislead. I believe Hershey would die if they saw my little 5 year old the past four days. Her little body has been extremely lifeless, and she has slept non stop except for when she is vomiting. She only has sipped a little water and has not eaten a thing for 4 days. She only weighed 45 lbs. and lost 5 lbs. this week. After reading some other blogs, I can see she is an extreme case. She was completely poisoned. Not to mention that parents had to take off work all these days. I have been communicating with Hershey to change this.
    Sincerely,
    Kathy Mc

     

    • Rebecca says:

      I am so sorry to hear this. It breaks my heart! This story is the perfect one (unfortunately) for advocacy on proper labeling of gluten on foods in the united states. Canada is there, why aren’t we?

       

  • Kim says:

    Hi guys! I have struggled with “stomach issues” my entire life but most severely since the birth of my oldest daughter (11). I went to one GI after another with no answers. More recently I have been suffering from chronic fatigue and extreme body and joint pain. plus i feel “sick” most of the time. I was diagnosed with fibromyalgia and my dr referred me to a GI bc my vitamin levels are staying extremely low. I am scheduled for a colonoscopy, endoscopy bloodwork, and biopsy. She mentioned celiacs. I’m a skeptic with doctors bc of the hard time I have had over the last decade with them never really finding answers but treating me to death. I refuse to believe at 31 everything in my body is completely failing me. It has to all be linked somehow. I’m really scared that i will be positive for celiacs but test negative and spend another decade with my mystery diagnosis. Any suggestions on what I should look for with the testing or what questions to ask?

     

    • Rebecca says:

      Kim did you see my post about questions to ask your doctor at your first appointment? I am also 31 and had my body fall apart which ended up giving me the celiac diagnosis. Just don’t stop eating gluten until after your appointment. They won’t be able to adequately test for the problems if you stop eating it before your tests. Then if you are going gluten-free, you have to stop eating it completely or you will never get better. We are a great little celiac community here and even just gluten-free. We are all here to support you. I’m on twitter and facebook if you ever need us!

       

  • John B says:

    Your story has to be the worst news of my life!! I’ve had coeliac for 18 months and not touched anything but recently I’m really craving a jammy donut and thought one wont hurt me apart from a bad tummy but it’ll be wirth it. How wrong am I, it looks like ill have to avoid it now. I hope your happy!!!! Seriously though I’m pleased I read this. Thank you for been a human guinea pig.

    John

     

  • Gretchen says:

    I am so happy I stumbled across this blog! Im 16 years old and all the food teenagers want is filled with gluten! I have to admit I cheat a lot… And I sure do pay for it. My stomach hurts for an entire week and theres nothing you can do but “wait it out”… Story of us Celiac peoples lives!! Ive been gluten free for 6 months now and i still have horrible abdominal pain. Is that normal?

    Thanks, Gretchen

     

  • Betsy says:

    I have celiac and have been on a gluten free diet for about 20 years. I can’t count the times that I have been poisoned by cross contamination and human error. It is unfortunate that alls you can do is ride it out and hope that feeling like death doesn’t last long . But I have recently stumbled apron a product called GULTEN CUTTER you can find it at Walmart’s and Walgreens. I take it just before I eat whenever I think there maybe a possibility of being poisoned with gluten. My daughter takes it and can eat gluten and not get sick , I have not been that brave and have not tried taken it and purposely eaten gluten. It is a natural and breaks down the gluten in the upper intestine before it goes to the lower intestine and dose damage. So you may what to give it a try before your next party or restaurant experience.
    Betsy

     

  • Jennifer says:

    I came across your blog after having reaction to food served at a restaurant this weekend. My story, at the end of May 2013 I had a terrible stomach flu. It lasted 10 days. It was the worst I’ve ever felt and I remember at the time, this didn’t feel normal for me. I was in the hospital 3 times in a two week period due to extreme vomiting and dehydration and blood work that showed I was fighting a terrible infection. Then I was in ER at least once a week until the end of June when I was hospitalized for 5 days because I would feel terrible for 12 hours – vomiting, noise and light sensitive, foggy brained, etc – everytime I needed to have a BM that would never happen. Then like a light switch turning on, I felt fine for several hours and the cycle would start again. After 5 days, several tests and seeing a GI specialist in the hospital, I was told to go home as I’d get better nutrition and told I had developed IBS and a possible food allergy from the severe flu I had.

    I saw a Naturopath and he had me go on an Elimination Diet, which was the hardest thing I have ever done. In my 39 years, I’ve never had to read labels or watch what I eat – except when I had my gallbladder removed 2 years ago. Anyways, long story short, I cheated on the elimination diet and narrowed it down to having intense vomiting and dehydration episodes and feeling like a brick was in my stomach for several hours about 10 hours after eating food that had gluten, starch or alcohal in it. I would end up in the hospital to be rehydrated and to get IV anti-nausea drugs to help me. This weekend I got sick after eating at a restaurant and narrowed it down to a gluten or starch that did it, though the restaurant denied giving me gluten (they did it was in the chicken broth in my rice flavouring). I believe I have a gluten allergy and am very sensitive to cross contamination because the gluten free products I am eating now do contain some starches and I haven’t had issues.

    This has been such a difficult time for me. I have lost over 20 pounds since June 2013 – the first 15 pounds coming off in 3 weeks, the rest by cutting gluten and starchy foods out of my diet. I am reading online and I rarely see people who have episodes like mine. Does anyone else out there have vomiting episodes after consuming gluten and if so, how long after eating? (mine is about 10 hours after consuming food) I don’t have stomach pain but I do have a stomach burning and I get adrenaline surges and frequent urination my stomach feels like a brick and clothing resting on it is very uncomfortable and i feel a lot of pressure. Am I alone in these symptoms? Are these common symptoms for celiacs?

     

  • Amanda says:

    Hey Rebecca,

    I so appreciate your blog. I have always had digestive issues, but in 2006 i started getting severe hives, that.no one could figure out the trigger. Recently it started on my palms, so i decided to find out what i was allergic to. I went gluten free & dairy free for like 4 days. Noticed nothing wad changing and went on.vacation, and ate whatever i wanted. Oh boy was i gasy, bloated, gurgling gut, severe intergestion, burping. On the 12hr drive home, i waslike upchuck vomiting. Next i was in the hospital. I went gluten free again, but i dont understand its a week and i fluctuate from feeling better to completely slammed with bid E.T.

     

    • Amanda says:

      Sorry my phone dislikes me as much as my gut. lol. So i im getting slammed with stomach (intergestion) gurgling belly, the Big D, randomly on my very stricked gf diet. I havent had a normal bm in i dont know how long. Is it normal to suffer for a period of time after you go gluten free. I thought you’re supposed to feel 10x better. Im miserable!!!! Thank you for puting uourself out

       

      • Amanda says:

        Ahaha just rediculous… Thank you for putting yourself out there to help us figure our way through the stomach cramps

        Lets get well,
        Amanda

         

        • Karah says:

          It can take awhile (even months) to feel better. Many times after you first go gluten free you don’t realize how many items have gluten hidden in them. Check things like gum, mints, soups ect. I couldn’t figure out why my stomach would bloat up randomly until I found out the gum I was chewing contained it. Another thing you may want to think about is going on a probiotic or taking something like Papaya enzymes after you eat. Your body won’t be able to break down food very well because of the damage to your gut.

           

  • Wendy L says:

    Water, Water, Water –
    I have negative reactions to MSG and aspartame as well as gluten.
    When I feel that I have been exposed to one of these, I drink lots of water to help process the bad stuff through my system faster.

     

  • Tim says:

    So happy to find this info. The swollen joints and head fog really hit home for me. Also, my gut feels like it’s trying to process nails and screws. I’ve been in a steady state of “attack” since Thanksgiving. It’s time to start healing. Thank you for the info.

     

  • Krissy says:

    I want to say, since I was 12 years old I have had stomach issues. Severe constipation, stomach pains, and occasional diarrhea with esophageal spasms- horrible. I have lived with debilitating stomach issues for years being blown over and just being told I had IBS and acid reflux disease. I am no doctor, but I KNEW what I was dealing with was more than IBS, and I was forced to live in agony every day (who really takes kids seriously- it is sad). It wasn’t until after I had my son two years ago that my symptoms flip-flopped. I started having diarrhea every day, then multiple times a day, and then the barfing started. I was literally living in the bathroom. I had to make an appt with the gastroenterologist, and while I waited for my appt date, I decided to take a hold of my own health. I did what we are told not to do, and googled away. It had to be Celiac’s or Crohn’s and I took charge and started with cutting out gluten and educating myself more on nutrition. I didn’t need the biopsy, colonoscopy, or blood work to come back from the doctor’s office because my stomach was 75% better by the time it was confirmed. I am a very careful Celiac, and I rarely eat anything out, and usually when I do try to take a chance (even at places who offer ‘gluten-free’), I usually will pay for it. It isn’t worth being glued to the toilet with my head in a trash can. My violent poisoning will onset anywhere from an hour to 5 hours from ingesting toxic gluten. I ate a contaminated salad that I bought three days ago and I am still recovering from it. I just hope that everyone here who has spoken up and shared their stories will help someone. More and more research is showing that cases of Celiac’s Disease ranges from constipation to severe diarrhea and vomiting. Be your own advocate… no one should have to suffer. Thanks, Pretty Little Celiac, for starting this… awareness is key. Feel better everyone!

     

  • Joey says:

    I like how you break down the time line for the pretzel. I usually know in two hours myself. One night at a friend’s house, I poured myself a glass of wine. It was dark with a foam on top. I took a sip as if in a trance. Just as I went for the second sip, the host said; “you know that’s beer right?” Those damn Trappist are disguising beer in wine bottles. Who knew? It was so good. The denial was so strong. Later in the evening, I thought; ‘gee, I’m full.’ It was the bloat. Ugh, the bloat! I woke up in the middle of the night in abdominal pain. Only until after being gluten free, did I link my sleeplessness to my diet after waking up in abdominal pain or excessive farting.

    I’ve been gluten free for six months. My IGA Panel was normal, but my primary doctor recommended going gluten free to see how I felt. I’ve had IBS, reflux and Eczema for years. All went away on a GF diet, until I started eating out again. “Gluten Free” isn’t gluten free. I was still skeptical though. So I went ahead to see a GI doctor and whatever I said, he felt warranted an endoscopy, BUT he wants me to liberalize the gluten. To be honest, I’m a little scared. It makes me feel like crap. Also, I cheated this weekend at a holiday party cuz I didn’t want to be the glutard eating salad and rice. Welcome back all my old GI symptoms. Today I was light headed. Is that the brain fog??? I felt out of it all day, but almost four days later. I’m applying for grad school and taking the GRE next month, and I can’t afford to be out of it. Recommendations or thoughts.

     

  • Kate says:

    I am not diagnosed celiac but I am sensitive and irritated by gluten, among other things. It’s hard for me to not cheat because I am not always affected at first. One too many cheats and I am right there with you on intense stomach aches, bloating, immediate runny nose and swollen sinuses, brain fog, diarrhea, flaky skin rash. However I can tolerate things like a hand full of cookies or a bagel here and there on a good day. So take this with a grain of salt.

    Have you tried eating paleo? It eliminates all the gluten-full baddies without making me feel like I’m deprived, or like I’m going to be poisoned. For me, I take it further and avoid nuts, eggs, and seeds. It changed the way I look at food. I eat meats, fruits, veggies, and lots of good fats. I even make my own spices from stuff in the produce aisle at the grocery store because I know it’s safe! It’s so easy. And what person wouldn’t drool over a meal of juicy steak, carefully chosen bacon, sweet potato, and broccoli?

    When I do mess up and cheat (pretzels give me the worst stomach ache, hands down, after the first bite) I reach for raw parsley or cilantro. Something about it halts the ache immediately. If I intentionally cheat I eat an entire bunch beforehand. This may not help if you’ve got it bad but I know how it feels to be desperate, and worst case it won’t do anything but best case may work.

    I don’t pretend to have it as bad as some people, but I can’t carry on glutening myself. My last episode led me to your site in the hopes of motivating myself to not cheat. It’s just hard sometimes to be the odd one out. I felt compelled to comment – I hope my little tricks can help someone.

     

  • Angela says:

    Can I just say DITTO to all of the above…Last month I had 1 slice of Pizza from NYC and was in so much pain for a week…I eventually went to the ER and my gallbladder had to be removed…Since then I have been totally gluten free…but it’s still so confusing because I can eat Italian bread from the bakery with no problems at all and my local pizza place has thin pizza that doesn’t bother me…I chickened out on the upper endoscopy 5 years ago and just decided to cut down on gluten but I really need to get tested…I had my appendix removed about 20 years ago then my gallbladder recently and I’m thinking it’s all related to gluten and I’m so afraid of what’s next!! It does so much damage to our bodies!! On a positive note, the joint aches and swelling has gone down and that foggy feeling is GONE! Like a miracle! Almost like I couldn’t wake up and now my brain is so clear and alert!!

     

  • Kristine says:

    I have a 3 month old that seems to have a reaction when I eat dairy and gluten. I also have Celiac disease. I have been off gluten for 1.5 years. But last week I rationalized that I must not have it any more so I ate some breaded chicken. The next day my son had mucus stools, congestion, projectile vomiting, and bloating. No more vomiting after two days but a low grade fever, diarrhea, and a rash like mine. I had bloating, stomach cramps, hair falling out, my gluten rash on arm, and a week later I feel better but now have diarrhea today. Could it be a virus because that would seem like a big coincidence? Have you ever had those symptoms?

     

  • Betsy says:

    Go to walmarts or walgreens and buy Gluten Cutters and take them when you go out to eat or anywhere you could accidentally be glutened it is a great way to keep safe.

 

 

Celiac and Depression

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This was a post written back in July 2012. I’ve since had major improvements but I think it’s important to show the history and seriousness of this disease.

I’ve never been one to hide my feelings or shy away from what is going on my life. I think there are so many other people that could benefit from knowing they aren’t alone and share in the same situations that it’s important to stay true to yourself and others. That’s why I’m writing this post.

If you’ve been following me for a while, you know I’ve had several set backs over the years. I had a miscarriage that was very difficult for me, I found out I suffer from Celiac disease, I went through tremendous hurdles to get my business up and running and I left my full time job to follow my dreams. There have been other things that went on of course over the past few years but these are the notable major events.

For the last few weeks, I’ve found myself watching more television, sleeping more and generally being more irritable and cranky than usual. My level of excitement and enthusiasm was down and I’ve been struggling with staying on track or focusing on goals. It was when I told my husband I was sick of talking about Bexa that I knew something was wrong. I found myself going up there less and struggling to get motivated.

That’s when I realized  I’m suffering from depression and anxiety.

I found a therapist and started going last week. Just in two sessions I already feel better and more up lifted. Heck, I’m even writing this post which is a great sign. Sometimes I think because I spent 7 years in the social services world and around counseling all the time that I’m immune to needing their services.

Depression comes in many forms. As a society, we are prone to thinking depression comes in the form of locking ourselves in a dark room, under our blankets and not coming out for weeks. Or in the lovely commercials for pharmaceuticals, we are restlessly staring out into the rainy weather wishing we could just gather our spirits to enjoy the day. Believe it or not, you can be depressed and still live a functioning life. The symptoms are so different for people, you have to know and understand your own behaviors in order to recognize the signs. For me, I needed a 3rd person professional for me to understand I’m not crazy and these are normal feelings I’m having for the circumstances right now in my life.

WebMD is a great place for resources on finding our more information on how you are feeling and when to seek help. There are a number of supplements that relieve anxiety that I had no idea about! Check out what they said below regarding Anxiety and Depression.

What Are the Symptoms of an Anxiety Disorder?
Symptoms vary depending on the type of anxiety disorder, but general symptoms include:

  • Feelings of panic, fear, and uneasiness
  • Uncontrollable, obsessive thoughts
  • Repeated thoughts or flashbacks of traumatic experiences
  • Nightmares
  • Ritualistic behaviors, such as repeated hand washing
  • Problems sleeping
  • Cold or sweaty hands and/or feet
  • Shortness of breath
  • Palpitations
  • An inability to be still and calm
  • Dry mouth
  • Numbness or tingling in the hands or feet
  • Nausea
  • Muscle tension
  • Dizziness

While I don’t have all of these, I have enough of them to then turn around and cause me to have depressive symptoms as well.

Major Depression: What Are the Symptoms?
Depression shows itself differently in different people. Common depression symptoms are:

  • Depressed mood, sadness, or an “empty” feeling, or appearing sad or tearful to others
  • Loss of interest or pleasure in activities you once enjoyed
  • Significant weight loss when not dieting, or significant weight gain (for example, more than 5% of body weight in a month)
  • Inability to sleep or excessive sleeping
  • Restlessness or irritation (irritable mood may be a symptom in children or adolescents too), or feelings of  “dragging”
  • Fatigue or loss of energy
  • Feelings of worthlessness, or excessive or inappropriate guilt
  • Difficulty thinking or concentrating, or indecisiveness
  • Recurrent thoughts of death or suicide without a specific plan, or a suicide attempt or specific plan for committing suicide

Depression Treatment: When Should You Get Help? If you have five or more of these symptoms for most of the day, nearly every day, for at least two weeks, and the symptoms are severe enough to interfere with your daily activities, you may have major depression. It’s important to speak to your doctor about treatments to start helping you feel better.

Thanks WebMD – Back to me…

My depression and anxiety come in the form of agitation and frustration along with repression and denial. In therapy, I learned that frustration is just a nicer word to use to mask your true feelings. And this is completely true. So while I do have some of the symptoms listed above, I also have my own personal symptoms that are unique to me. The only way I would have known this is by going to a therapist.

Part of my issues revolve around being my own boss. I honestly don’t think I am living up to my own expectations and it’s frustrating for me. I’ve gained a little bit of weight and am really struggling to get back on track. I know, I know. I still look great is what you will all say but you have to remember that perception is reality and I perceive myself as out of shape and not where I want to be. I’m not as strong or fit as I used to be, I struggle with having Celiac and honestly I’m angry about having Celiac. 2 therapy sessions and we’ve narrowed it down partly the business and compounded by my complete and utter anger in having Celiac and how it affects my life.

I think I’m different in the sense that I’m still optimistic and working towards my goals. I don’t feel hopeless. I don’t feel like a failure. I don’t feel discouraged about the future. I’m just sad right now and am working to get out of this funk. I’ve decided against medications because I want to deal with this the right way and fight through instead of masking the symptoms with pharmaceuticals. While I understand some people believe in them, they just aren’t’ for me at this time. Please understand I am not saying people don’t need them or use them for a benefit. I’m just choosing to handle mine in a different manner.

I could go on and on in the post about where I am right now or how I’m feeling but the real purpose of this post is to educate people in symptoms and signs of depression and anxiety and how to ask for help. I found a therapist provider that offers my insurance on the Psychology Today’s website. I liked her bio and what she said she believed in for treatment and I followed my gut instinct. I think I picked perfectly.

Many times you will see my posts on Facebook and think I’m speaking to you. Actually I post things that are meaningful to me and if I write them enough I will believe them and keep working toward my goals. I fall off the wagon. I struggle with eating and fitness. I struggle with relationships and my job. I am no different than anyone else. I just choose to present myself differently and focus on the positives and getting over hurdles. I never really understood the point of dwelling in the negative. Everyone has choices in their life. Sure, they have consequences but you have weigh them against what you really want. Sometimes you just have to realize what is important to you and live your life to the fullest. The only person living your life is you.

So, how do you go about finding a therapist? Start with your insurance company list of in-network providers. If you feel comfortable, ask around to friends, networks or colleagues. No one has to know you are looking for yourself. Do a web search and find their bio’s and descriptions of how they treat their patients. What is their methodology? Do you want someone that shares your religious beliefs?

When going to find a therapist, make sure you feel totally comfortable with them so you can get the most out of your treatment. You won’t get anywhere by forcing yourself to see someone you don’t connect with or that you don’t think can help you.

Find a support team to help you, even if that person is just there for you if you need to vent or discuss your ideas/thoughts. I like to go somewhere and be alone after my sessions. I take notes from them and then plan on how I can improve or make changes based on what we discussed in our session. There is no shame in needing help.

The bottom line is that everyone goes through crap. It’s how you handle that crap that makes you unique. Some people choose to wallow in their pain and try to make everyone else miserable with them. Some people choose to lock themselves in their house and isolate for a while. Some people choose to live on and rock on despite struggling and get the help they need. Just know that no matter where you are or what you are feeling, there is someone out there to help you – you just have to be ready and willing to ask.

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Abby

Hi Rebecca, I am 24 newly married (June 9, 2012 to an amazing guy who i have been with for almost 9 years) and I wanted to write you a comment to simply say Thank you. Thank you for being so amazingly honest and genuine with what you write on your website. I was feeling so sick yesterday and down in the dumps when I came across your webite and after reading it I felt like for the first time in many years that I was not alone anymore, like WOW there is somebody who knows and truly understands all the pain, depression, anxiety, just all the symptoms caused by celieac that can take over the better part of the day. I was diagnosed with celiac about 6 months ago. I have been struggling so much with how to make gluten free my new lifestyle and after reading so many great topics on your website I am beginning to have a whole new outlook and instead of spending more days feeling sorry for myself I am looking forward to keeping up with your website and staying positive and feeling that Im lucky that I now know what is wrong and that I can be in control and make things better! Thank you so much for this website!!! Best wishes…Abby

 

  • PrettyLittleCeliac

    Hi Abby!!

    You literally just brought me to tears! THANK YOU THANK YOU for writing this post. It makes me feel so good and warms my heart that I can help others in similar situations as myself. I think we all just get too caught up at first with the diagnosis and nobody really ever breaks it down for you into a all the pieces and parts of your life. Your life is what you CHOOSE to make of it – so we can be down in the dumps or put the dumps in our trunks and move it on outta here 🙂

    Rebecca