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

cautionbread

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.

img_369811

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??

pop-with-dogs
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?

3outof4disorderedeating

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.

img_37311

img_332311

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.