I’m a WeGo Health Activist Finalist for Rookie of the Year Award 2012!!!

I’m a finalist for the Rookie of the Year Award!
I’m a finalist for the Rookie of the Year Award!

I am SO excited that I’m just smiling ear to ear today after hearing I am a finalist for the Rookie of the Year award by the WeGo Health website! Click on the link to see the other finalists and share or comment on the post!

What does the WeGo Health program do?

WEGO Health is a different kind of social network, built from the ground up for the community leaders, bloggers and tweeters who are actively involved in health online. WEGO Health is a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities. And it’s free.

Our goal is to equip our network with opportunities designed for the active contributor, relevant content, powerful educational resources and shareable interactive media. We hope that the bloggers, tweeters, and community leaders that we call Health Activists will find inspiration, strength and support here.

All I can say is THANK YOU to my followers and the gluten free and celiac community for opening your arms to me and bringing me into your world.

 

xo

Rebecca

Living and Coping with Chronic Illness: Staying Positive is Key!

Today is day 3 of recovery from my laparascopy procedure. I’m still in quite a bit of pain, nauseous if I get up to move around  and have a huge swollen belly. My body hasn’t stopped itching since I had the procedure despite taking a shower and rinsing all the antibiotic gel stuff off. But overall, I think I’m healing more and more each day. I feel much more aware today despite being very sore still.

The laparascopy confirmed an endometriosis diagnosis and I also have an inflamed bladder, whcih I will need to go to a urologist specialist to have it cheked out. I will go back to the doctor  in a couple of weeks to follow up and see where we go from here.

I wanted to write this post after a negative comment I read on a forum while researching chronic disease. It was a comment about a certain chronic disease being “fake” just to collect disability money and live off the system, which I found highly offensive. I never personally had someone say this to me (partially because I would chew them out) but I know other friends have heard similar things. I have however heard the following on numerous occasions:

Yes, I know there is “something wrong with me.”

Yes, I know that this “isn’t normal.”

Yes, I am “sick of being sick.”

N0, I am “not pregnant.”

No, I am “not falling apart.”

I do not need a constant reminder from people about what I am going through. You want to know what I need? More of the supporting, loving and encouraging people in my life that have been there through it all, never question my illness or treatment and make me feel sane during a very emotionally charged time. If you are not one of these people, please don’t expect to hear from me that much.

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Sometimes I think I need another business card for my issues or a line on my resume for my special needs.  It’s very hard for some people to imagine that this could happen to someone all at once or that the treatment is difficult and slow. It’s even more difficult for people to believe it happens to young people like me who are in their early 30′s. That usually takes the direction into a conversation of how much worse it’s going to be when I get “older.”

Living with a chronic illness is difficult enough, we don’t need people in our lives challenging how we feel, minimizing our pain and treating us differently for suffering. I never thought in a million years I would spend an entire year trying to find answers. I didn’t expect to spend a whole year dramatically changing my entire lifestyle.

A chronic disease is something that lasts longer than 3 months and affects numerous parts of your life. Right now I’m living with celiac disease, endometriosis, arthritis, latex sensitivity and hypothyroidism. My body is completely out of whack. This is challenging enough as it is, I don’t need inconsiderate jerks to remind me.

Alright, we know this is an issue and if you are reading my blog, I know you totally understand where I’m coming from with this point. So, how can we help ourselves through this?

1. Slowly back away from people in your life that aren’t supportive. The negativity is draining you emotionally and is impeding your recovery from illness. In order to get through it all, you have to be mentally and physically tough. It will be hard to say good bye at first but I can promise it will be worth it in the long run. Replace those negative nelly’s with people who genuinely care, love and support you unconditionally. This includes a clean sweep on social media sites like Facebook, Twitter etc.

2. Don’t debate people over the issue. There is no point. If they don’t or can’t understand what you are going through, they aren’t going to change their mind after you “educate” them on the disease. It isn’t worth your time or energy.

3. Focus on yourself for a while. It’s ok to miss the parties, happy hour’s and other social events. They will be much more fun once you can get out there healthy and enjoy the time with friends.

4. Follow doctors orders. I struggle with this. I want to be superwoman and heal quick to keep moving at a fast pace. I actually thought I would be able to drive to Pittsburgh to speak today at the Celiac Awareness Tour 3 days after my surgery. Primarily it’s because I am nuts. Sitting in a car for 3.5 hours there and back would have been torture for me. But I thought I would be fine after 1-2 days post operation. Lesson learned on this one!

5. Some of you might get mad at me for saying this but don’t use your illness as an excuse to get out of things all the time. That’s when people get mad at you and when they start thinking your condition isn’t “real” or whatever else they think. Just be honest and truthful with people and they will be much more accepting of your empty seat at the dinner table.

Do you suffer from this? 

How do you stay strong in the presence of non-believers?

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This celiac mask is really getting on my nerves.

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Disclaimer: Men this post is for the ladies :)

Celiac disease is quite the emotional roller coaster. Whenever it seems as though you’ve got it figured out, something new creeps in just to keep you on your toes. Hence the title of this post about celiac being a “mask.”

Wednesday I’m having a laparoscopic procedure done to check for anything going on in my reproductive organs like endometriosis. I keep having these stabbing like cramping pains throughout the month and my ovulation time is excruciating. And even after cutting gluten, latex fruits/veggies, lactose, corn and poultry – I continue to gain weight right in my belly region. No, I am not pregnant.  

I’ve gained 10 pounds since Christmas and almost 20 since last summer. Today I woke up and weighed 5 pounds more than I did yesterday along with feeling a tightness and fullness in my stomach that I never usually have. Something is going on. I feel completely uncomfortable and out of control. I don’t eat gluten-free processed junk foods so I know that isn’t the case and even if I did do that, the weight doesn’t come on that quickly from over eating.

It really is true that once you resolve the main problem, you start finding things that were masked by the undiagnosed issue. Once you cut one thing, another comes along making you wonder if you are ever going to be able to eat anything ever again.

For me – I was diagnosed with celiac disease, Hashimoto’s hypothyroidism and arthritis last January. At that time, I cut gluten, poultry and latex laden fruits/vegetables. Then in the spring I cut lactose too as Greek yogurt continued to irritate my stomach. Finally in December, I cut corn. I’m not sure there is anything else to cut.

I’ve been able to manage the Hashimoto’s strictly with food. My thyroid levels are perfect with no extra medication. It took a full year to get there but I’m happy I chose not to take medicine.

Then I started feeling sick again last fall, which didn’t make sense because I’ve been very diligent about gluten removal only to find out that I should have cut corn too. The over compensation of corn products sent my body into overdrive again.

As a fluke, my old obgyn didn’t fill my Nuva Ring prescription and I have been off that for almost 2 months now. It’s amazing that my migraine headaches went away during my last 2 periods and I’m sleeping perfectly. Could it be that was causing all my sleep problems for the last 10 years?

Bottom line: I feel amazing. My head is clear. I’m productive again. I feel like I’m on top of my game. I’m not having any stomach pains (the old kind) and all of my blood work levels are perfect. So why am I having these other issues?? It is so cruel to think that I’ve done everything I’m supposed to do and there continues to be one missing link each time I think things are great.

Hopefully, Wednesday is the last missing link and I can get that all figured out. I will post again at the end of this week and let you know how it goes. I get really nervous about these types of procedures simply because I don’t have them often and I am terrified of anesthesia.

What other things did you find out you had along with celiac disease? 

 

Do I have celiac diease? Preparation and questions for your first doctor’s appointment.

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So, you’ve read my post about finding a doctor and now you are ready to make your first appointment! Congrats, that is the first step in getting answers for whatever has been plaguing you for years. I am not a medical doctor and do not understand the complexities of testing and diagnosis for celiac disease on the back end, so I am not going to post what type of medical tests you should ask for or have done. I will post links at the bottom of the post from other credible websites for you to review.

Here are my suggestions and tips for getting the most out of your initial doctor’s appointment for gluten intolerance and/or celiac disease.

Before making an appointment:

1. Find out if your doctor actually has experience treating and diagnosing celiac disease or other gluten related problems. There is no point in going to see a doctor who doesn’t specialize or isn’t familiar with these issues. You are just wasting time on getting answers.

2. Ask how long you will have for your first appointment. My doctor allows 30 minutes for a first appointment and 15 for follow ups. Don’t waste your time with the doctor chit chatting!

3. Prior to your appointment, write down all of your symptoms and chronicle your medical history. This will be much easier to show your doctor and review than sitting there trying to think of them all and realizing you didn’t bring up important ones after you already left.

4. Get your medical records from your other doctors sent over to the new one. You will need to sign a medical release of information and might have to pay a fee but it will be worth it for the new doctor to have all your information in one spot.

5. Know and chart your family medical history. Again much easier than trying to remember it all in a 30 minute appointment.

6. Write down every single prescription medication, over the counter medication, supplement and vitamin that you take. Include all the doses and schedule for each of them. Even ones you might be embarrassed you take like an over the counter weight loss pill.

7. Write down why you think you have celiac disease or problems with gluten.

8. DO NOT change anything about your diet or lifestyle prior to going to the doctor and having tests done. This is essential for finding out what is really going on. You have to get an accurate picture of your body condition in order to diagnose.

9. Understand there is no pill or medication for celiac disease if you do in fact have the autoimmune disease. The only way to manage it is with a gluten free diet.

10. Don’t panic or come to your own conclusions prior to going to your appointment. Be educated on your history, your body and yourself to provide the doctor with the exact picture of what is going on. This is the BEST way to get an accurate diagnosis of whatever is upsetting your body.

Questions for your doctor at your first appointment:

1. How do you diagnose celiac disease? What blood tests do you run? Do you test for the celiac genes? Will you want me to get a bowel biopsy? This past year I’ve realized doctors have so many different ideas of diagnosis. I’ve heard one speak about biopies being the only way to tell and others say genetic presence with condition improvement upon removing gluten are just as acceptable. It’s important to understand your doctor’s beliefs and thinking on the diagnosis component.

2. How quickly does you lab turn around results and when can you make your next appointment.

3. Do you provide aftercare, follow up blood tests, recommendations for support groups in the area and additional help?

4. If I don’t have celiac disease, what other conditions could I have with the symptoms I’m experiencing?

5. Can you refer me to a registered dietician specializing in celiac disease?

6. How often will I follow up with you after my original test results?

7. If I have nutrient deficiencies, what is you protocol for treatment?

8. What other tests should be run along with the celiac disease testing?

You know I love your feedback – Post below for others to see if you thought of things I missed!!

Websites for celiac medical tests:

 

http://www.csaceliacs.info/diagnosis_of_celiac_disease.jsp

http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

 

How to find a doctor for gluten intolerance and celiac disease

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It’s hard for me to imagine 1 year ago this week I was sitting at Dr. Aukerman’s seminar thinking to myself, “maybe I do have a problem with gluten.”

After 20+ years of having issues, could this finally be the answer I was looking for that would solve all my bowel problems? Would this doctor really be able to finally solve the mystery? As a matter of fact, he did but only because I persisted in looking for answers.

I started Pretty Little Celiac a little over 4 months ago and I couldn’t honestly believe how fast it picked up in the gluten-free/celiac community. I’ve met hundreds of people struggling with the same exact symptoms but are unable to find their “Dr. Aukerman.” I get question after question from readers wanting to know how I finally was able to figure it all out and who helped me get there.

Let me give you my suggestions on how to go about this journey based on my own experience.

1. Don’t ever let someone tell you nothing is wrong if you believe otherwise. One of the most frustrating appointments I’ve had to date was with an allergist trying to find something wrong. There had to be something making me sick in my food so I went to get allergy tested. 100 back pricks later with NO results. Nothing! Not one thing came up as a problem during my test results. That doctor recommended I go to see a GI doctor but also told me that they really wouldn’t be able to figure out intolerances unless I went on a complete food restriction diet and then added foods in slowly. Well, I’d already been to several gastrointestinal doctors and just figured it was a wash.

2. Referrals – And when I say referrals I mean from friends and family that have had simliar problems and went to a doctor who they trust and finally helped them out. Doctors can refer to other doctors but do those doctors listen to their patients? Do those doctors actually take the time to spend with you so you know what is wrong? Do those doctors know about the bedside manner of their colleagues? All of these things are important. I knew my friend went to Dr. Aukerman and trusted him with her care. She also felt incredible since her diagnosis so of course I was going to check him out.

3. Google Searches – Make sure you look for several different terms when you are searching and you include a 50 mile radius for your search. Gluten intolerance doctor, celiac specialist, celiac gastrointestinal are some terms I would start with when researching online. Often these doctors have been reviewed online as well by other patients so that even cuts down on some stress of finding a new doctor.

4. Check with local gluten free or celiac support groups as to what doctors they like seeing and have helped them. Other people suffering from the same problems is the perfect way to start!

5. See if your local University has a celiac center or doctor specializing in the disease at the school. Specialists are often found at large medical centers like Universities because they can get money for research so they stick with places that will pay for those types of things.

**Do NOT take gluten out of your diet if you are going to be tested for celiac disease or gluten intolerance**

You need to keep everything the same prior to seeing any doctor so the tests can be done. If you start changing things prior to testing, it can seriously affect the ability to find out what is actually wrong.

How did you find your doctor? Leave a comment with a tip so others can get the help they need!

 

Food Addiction? What is wrong with us? Changing the way we think about food.

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I posted on Facebook yesterday what foods people missed most from their gluten free lifestyle. The purpose of this post was to see what types of food I could play around with or find as a great substitution for what everyone was missing.

54 People commented on my post and the comments as I read through them disturbed me. I completely understand that we miss bread, pretzels, beer etc but some of the things that people wanted to have so desperately are part of the problem in society.

I recently spoke to an Ohio State University group called CHAARG -Changing Health, Attitudes, and Actions to Recreate Girls – They came to Bexa Body Fitness for a group fitness sampler and a little seminar on healthy eating in college. I spoke to them a lot about food options and ways to make better choices when eating on campus.

I can’t emphasize to people enough at my fitness studio:

  • If the ingredients look like they should be on a shampoo bottle you probably shouldn’t be consuming them.
  • There is nothing FRESH about Subway – Their lettuce is out of a bag and their meat is as processed as you can get. The sandwich is entirely bread and why do you always smell when you leave there?
  • I’ve never met anyone in my life that told me they were addicted to carrots, sweet potatoes or steak. I do however on a daily basis meet people that can’t give up artificial sweetener, diet coke, candy, sugary coffee drinks etc. What does that tell you about those foods and how they are reacting in your body? Your brain is addicted to these substances and no one seems to think this is a problem.

The list of foods people missed goes something like this:  Pizza, biscuits, donuts, pie crust, pizza, flour tortillas, bread, pizza, twizzlers, crackers, hot dogs, Subway, Arby’s, pizza, McDonald’s, funnel cake, Ciabatta bread and so on….

ON TOP OF THIS – I see an incredible amount of children and teenagers also addicted to these foods.

I believe that when people think of food addictions, they think of the television shows on TLC about people being cut out of houses or Extreme Makeover Weight Loss edition. But, we are all addicted to food in some capacity. Some people are able to handle it better than others but very few people recognize the problem/trend in our society.

Our society pushes low fat, low sugar, no fat, no sugar, low cholesterol and anything else with “low” or “no” in the front of it.

Do you know how those things get to be that way? They pump the foods filled with chemicals and fillers so they taste great and food us into believing they are healthy or good for us. They aren’t. Our brains are so fooled and duped into thinking all food should taste this way that eating a nice whole meal of protein, potatoes and veggies is like eating cardboard.

All of us that can’t eat these other foods and desperately long for them are proving my point. We are just replacing these junky gluten filled foods with junky gluten free foods. While it is fine once in a while, it is not ok all the time. Moderation is key but when options are so limited, I’m finding it much easier to go overboard on gluten free foods.

I’m absolutely not saying that I don’t fall into this trap. There are certain things I know I miss desperately and would love to have again. There are foods filled with gluten and gluten free that I know I can’t keep in our house because I won’t be able to keep my hands off them.

But I understand now how all this affects my brain chemistry. I realize how screwed up our society is to see that eating “I can’t believe it’s not butter” is better than eating regular butter. Do the research. Butter won’t kill you but I’m pretty sure whatever the hell is in that fake butter will.

We are the fortunate ones. We can’t eat that crap or we get sick. We are the ones that have the opportunity to heal our bodies and wean ourselves from the stuff we once knew.

If you get anything from this post, it might just be the 3 bullet  points I posted above and you might just think of a shampoo bottle next time you check out ingredients!

But I challenge you to think about these things the next time you are longing for a brownie or piece of pizza.

 

Celiac and Ear Wax: Is there a connection?

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Ear Wax and Celiac?

My entire life I’ve been accused of “yelling” or speaking too loudly. I never understood what anyone was talking about because I spoke in my normal voice. Regardless, I seemed to always get hushed. I’ve always found myself asking people to repeat themselves or saying “what.”

In 2005, I jumped in a pool and it caused my ear drum to pop leaving me in the emergency room with my new boyfriend. Talk about embarrassing. Aaron sat there while I laid in agony on the table as the nurse pulled ear wax balls out of my ear canal. The doctor said I must have had an ear infection for a long time and it finally had enough with the pool water. I left the emergency room with a ton of medication and a wonderful boyfriend who later became my husband.

I know you aren’t supposed to use Qtips – but they feel SO good. Every single time I use them, I get so much junk out of my ear. I realize I’m pushing more probably into my ear canals but I don’t think what comes out of them is normal.

The ER doc referred me to an ENT specialist that I went to off and on for a few years. He always seemed to have the same reason for the wax and pain in my ears – “seasonal allergies.” I honestly think that’s the generic term for everything and can just be cured with allergy meds.

It wasn’t until this year when I started putting all the pieces together. I recently found this article on the Livestrong website about Histamine and ear pain with celiac disease:

“During an allergic reaction to gluten, various chemicals are released that cause your blood vessels to dilate and irritate soft tissues. Histamine is the primary chemical in your body that causes inflammation and swelling to occur in soft tissues. As histamine levels increase in the soft tissues in your ears, swelling causes blockage in your inner ear that can lead to congestion. The congestion may also cause fluid to build up within the ear, causing temporary hearing loss.”

Read more: http://www.livestrong.com/article/542914-gluten-ear-problems/#ixzz28WfLkMDJ

Ear wax is 20 to 50 percent fat, and it coats the ear canal to moisturize it, fight off infection, and help keep dust, dirt, and other debris from getting deep inside your ear. Maybe it is also a protector against other things your body doesn’t want too and it’s a response from having the gluten poison.
I did notice when I stopped eating gluten, my ear pain went away and my “seasonal allergies” seemed to disappear. There are occasions when I think I’ve got a little ear pressure or runny nose but sometimes that’s just normal life.
Again, I’m not a doctor! Just one gal describing her symptoms and signs wondering out loud if they are all related. Sometimes it takes a while to put all the pieces together… With over 200 symptoms of Celiac disease… how could anyone piece all this stuff together??

 

 

That’s It… I’m Done… Time for a Change… Who’s With Me?

For those of  you who also read my bio, you know that I am a fitness expert as well as a gluten free/celiac blogger! Well, the celiac diagnosis has taken a toll on my health, not to mention the hypothyroid problems that came along with the gluten allergy.

I love working out. I really do. Admittedly, I haven’t been adhering to my own standards and beliefs because honestly I just haven’t wanted to. I spent the last 8 months trying to figure things out, frustrate myself and run myself in circles just with the celiac disease – let alone work out.

Yesterday, I ran the Hell Run 5k with my husband and today – I hurt. My knees throb, my back aches, my shoulders are sore and my core is tender. When I ran the Mud Ninja in July, I felt fine. What happened to this fit girl in the picture above? This is what I frequently say to myself almost every day when I look in the mirror. Sure, you might not notice anything in the photos but I feel the difference.

I feel weak.

I feel vulnerable.

So I decided today will be my last day feeling weak and vulnerable. Starting tomorrow, I’m taking control of my health. I’m taking control of my fitness. I’m taking control of my diet.

October 1, 2012 is the day I take control.

I saw online that October is Celiac Sprue Awareness Month, but so is May so I’m not entirely sure which one is correct. But, I think its a great place to get started. I’ve purchased all my “whole” foods. No more snacky snacks. No more processed junk. Just good, whole foods.

Steak, fish, rice, potatoes, green beans, sweet potatoes, tuna, spinach and berries. That’s it for the next few weeks. I’ve got my coolers out, my containers ready and my food prepped. Preparation is key. I know how to do all of this – I just need to stick with it!

Back to my workout regimen of 5 days per week. It feels good for me to be in the gym. I need to sweat and pump iron

I’m incredibly busy the next 10 weeks and I absolutely have to make time for myself.

No excuses. Hold me to it!

Who wants to commit to an October change with me? Post your October resolutions below and let’s get this party started!!!

I’m going to promise Coach I will take him to the park at least 3-4 days per week so he can get exercise too!

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.

 

 

 

My wife is the Pretty Little Celiac and this is our Celiac Journey…

The Trophy Husband

Diaries of the Pretty Little Celiac’s Husband

“Watch the cart” This is the first thing that comes to my mind when I think of Rebecca and her relationship with food. There are too many times to count when we would be speeding home from a night of eating out, screaming at me to go faster or she was going to “bleep her pants”. One time in particular, I had marks on my shoulder when she was grinding her nails into my shoulder as I was turning the corner, coming into our sub-division. We were forced to stop behind a car of an elderly couple who seem to be lost and to my dismay going under 10 miles per hour. I can’t even count how many times this happened. For a while, we would go to the grocery store immediately after eating out. Within 5 minutes of arrival, somewhere between the produce and bakery (rather ironically), she would eventually tell me to “watch the cart’, and she quickly walked to the restroom to ‘check out the facilities’. What was tough for me to understand was the relationship between what she was eating and her sometimes explosive reaction to the food. She would have what we thought was a very healthy dinner, chicken, veggies, whole wheat bread… explosion.. Then we would eat something that would be considered bad or greasy, like cheese fries or nachos loaded with cheese, and nothing. It was like trying to dodge land mines, but they were invisible or at least mis-labeled.

I Have Allergies too!
To give this some perspective,I have always had an allergy to nuts, more specifically, tree nuts. I have been to the emergency room about a dozen times in 30 years. If I have something with nuts in it, I have an immediate reaction. My reaction is much more severe than what Rebecca has with gluten. Certain nuts, if I ingest enough of them, will swell me up to the point where I will not be able to breathe, and die within minutes. Other nuts will give me hives so bad that I become almost unrecognizable. That being said, I find my allergy much more manageable than having celiac. Why? I pretty much know what food has nuts and what doesn’t. Nut allergies are well established in the manufacturing industry the labels on food are done in a way where there is no ambiguity, which I think has to do with the severity of the allergy. If someone eats a product that has nuts but it was not on the label, and dies, the lawyers come in. In the case of Gluten, if gluten is in a product and it says it is ‘Gluten Free’ and it irritates my stomach, it is pretty hard to sue for that. How could you prove it? I can’t even picture how that would play out in court!

In restaurants, it is very easy to find out what has nuts and what doesn’t, most of the time you can see them and there are well established foods that I know to stay away from.. IE Chinese (cooking in nut oils), desserts with walnuts, pecans , cashews…. For gluten, it’s not that straight forward, even to the most veteran celiac. We typically get looks of confusion if Rebecca asks if an item has gluten or not. Sometimes the quick response of “no’. That is even more concerning, since it is hard to determine if the waiter waitress is truly understanding the question. Lastly, the reaction to the gluten is not as automatic as the nut allergy. I am so sensitive to the nuts, I can of just smell them in the food and know. One bite (not even swallowing) and I immediately know. With gluten, sometimes it happens hours later or at times…days…so there is no immediate feedback. The gluten reaction can also be days in length, and can be one of many things for Rebecca. Mostly notably multiple trips to the bathroom. I know way more about her poop then I would ever care to admit.

More than that, it negatively affects her mood, her joints and at times our relationship. Damn you gluten!

The Experiments
Now that she has found out, initially there was a sense of relief. However, quickly a hard realization. Things that she loved to eat were slowly poisoning her. It has been tough. It is tough for me to find the correct way to support her in these struggles. I am a problem solver at work, however, in my experience with Rebecca, it is best to give her unconditional support and someone to listen to ,as opposed to offering any solutions. I don’t have to live with this condition, and I am learning along with her. I don’t have to live with the mistakes or mis-steps that happen along the way. The first few months she stuck to the four of five things she liked and could eat…but those would quickly come and go… Chipotle for a month, then Noodles and Company… then Annie’s Gluten free Mac and Cheese. Trips to gluten-free bakeries, gluten-free bagels, pizza.. some of it will disintegrate in your month… some of it was actually better than the gluten-free product, but you always pay 2x as much for it. We continue to find things we like, and don’t. Rebecca is very vocal either way.. no ambiguity.

How it affected me and my own weight struggles…
One unintended side effect of the discovery that Rebecca had gluten, was that it had positive effects on my health. To be supportive, and also because  I didn’t want to make two different meals (yes, I am the cook in the house), I began eating mostly gluten-free. I have struggled with keeping my weight down, and in the past I combated that with working out more and eating less of the foods I really enjoy! I was smack dab in the middle of one of my most ambitious cycles to get in shape. I was working out, sometime 2x a day, and I was actually gaining weight. The I had started to eat the gluten-free diet, again, the reason of convenience and sanity. I first noticed more energy in the afternoon while I was at work.

Before this, energy from caffeine was the only way I could get through the afternoon. But after eliminating the majority of the gluten in my diet, I was feeling more energetic and didn’t feel I needed caffeine in the afternoons. I began to feel as if there was something to this. I have now embraced eating this way, as well as more small improvements, and have lost 27 pounds in 12 weeks. I am working out less than once a week and not counting calories! My body seems to respond better to not having gluten, and I have never felt better and more energetic.

How I am trying to help…
I listen, I empathize and I learn. As mentioned before, I was not familiar with Celiac disease and gluten. In fact, my knowledge of truly good nutrition was greatly out of date. I have spent the past 5 months researching nutrition and in particular how it affects us on a daily basis. There are great resources on the internet. I particularly like some podcasts I have found on iTunes (search the ‘Health’ category). I listen to these on my to work or when I have the time. Rebecca and I have listened to them on the way to and from some our trips and we have found information that is consistent with what she is experiencing. Cooking for Rebecca continues to be a learning experience. We are constantly trying to find ways to cook the foods we like in a gluten-free manner. Sometimes is works, sometime it doesn’t, and we have to eat the failures. I know immediately if Rebecca doesn’t like it, and we now have at least a few things we can eat consistently. For the most part, we don’t eat out, and when we do there are specific restaurants we target.

What’s next?
We continue to try to find ways to have a lifestyle that we both enjoy. We have had many ups and downs.. mentally, emotionally, physically.. those won’t stop, at least not in the short-term. We are doing it together, but we stumble. She has to live with her body and it’s crankiness, but I see it getting better, although some days there are setbacks. We now celebrate eating out and not getting sick, we celebrate finding a pizza crust that is close to what she used to experience. We celebrate normal bowl movements… yes I said it.

Rebecca started her blog to help people find those little celebrations, to dodge the pitfalls she has found, and to inspire those who have this disease. She is also are looking to collaborate and learn from those who are fighting to maintain a normal and happy life. One day at a time, one meal at a time, we will get there.

Aaron

 

 

  • Becky

    It was as if you were writing about my life! Thank you.

     

    • PrettyLittleCeliac

      You are so welcome! Thank you for stopping by and I just plan on posting more and more…. Stay tuned and let me know if you’d like any specific blog posts…
      Rebecca

       

  • Victoria Rutigliano

    I have a VERY similar story as well. It took years for me to get diagnoised. So great that you are spreading the word to help others. This is a great website.

     

    • PrettyLittleCeliac

      Thank you Victoria for stopping by and I’m thrilled you enjoyed my website. That was the whole point in doing it to educate people. Did they say you had irritable bowel syndrome too?