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Anorexia Nervosa And Celiac Disease



I have just been doagnosed with Celiac disease. I have been anorexic for about 20 years. I am curious about the relationship between the two and have been doing some research on this. I think that I have always had the Celiac, it just went undiagnosed and was possibly inactive until the past year. My father had it as a child but says he has now outgrown it (though I thought you never outgrew it). Anyway it seems to be hereditary and this is where it seems to have come from. I would have been tested sooner if I had known the extent to which he was affected. He always said it had been a temporary allergy to wheat and I never put it together. I didn't know much about Celiac until the past week.

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Certainly anorexia did nothing but irritate the condition. I had a relapse in the past year and had gotten my weight down to about 103, at 5'6. Since then I have gained a little over 10 pounds towards recovery. Everyday it's a struggle to maintain this weight because I hate myself at this weight. But now that I have a REASON to eat healthier, I am going to do so. I was living on Whey protein bars, Whey protein shakes, whole grain cereal, and whole grain lean pockets. And I just kept getting sicker and sicker. I managed to gain weight but I felt even more miserable physically than I did when my body was in starvation mode. No wonder - I was consuming almost all wheat protein products. I can't think of a worse diet. I had all of the symptoms of Celiac, but still had no idea until a few months ago when I started to repeatedly go to my regular Medical doctor.


I would go in with a constant low grade fever, loose bowels, nausea, extreme fatigue, irritability, sleepiness, restlessness, depression (was being aggravated) - and each time they would do some type of test to rule out things such as bacterial infections, etc. After pretty much everything had been ruled out, they were at a loss and sent me to the gastroentologist. I'm glad I pushed it with them. Imight not have found out everything, had I not pushed them.


I went in for an upper and lower GI scope, not knowing what they might find. At first, he told me I had pernicious anemia and gastritis. Then when I went to the follow up appointment he hit me with the Celiac Disease with anemia instead. I was sitting there in shock as the doctor told me all about it. I knew people had allergies to wheat but I never had given it a lot of thought. Well, as he told me he wants my diet to be gluten free completely, I started to realize how much of a change I would need to make in my eating habits. It kind of put me in shock.


I immediately started the new diet last week then. I bought some guide books on what to eat and what not to eat. It seemed overwhelming but I have been getting through it. It's very triggering for my anorexia and I'm afraid I will relapse in the anorexia because now all of a sudden I have to think even more about food than I already do. I have lost about 4 pounds in the past week alone because of the change. Part of me is excited about that, but part of me knows how out of control I have been in the past and I don't want to wind up in the hospital AGAIN for anorexia. I have gone to the health food stores and purchased gluten free items and baking ingredients. I was never a great cook before. Now I will probably be cooking and baking pretty often.



I was wondering if there are any people in my area who would know about any groups or support resources? I live in Michigan. Or where I could look? I've seen celiac.com and some others but none seem to be right in my area.


At the very least, I'm happy I found this group and hope I can find some support in theis huge change in my life.



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It sounds like you have been through alot and I wish you the best. It seems to me that with your history of anorexia you should look at getting some expert assistance in terms of your diet and ensuring you stay on track. My GI set me up in a meeting with a nutritionist which was very helpful. Perhaps you would find it helpful to do that. As well, I am assuming your family doctor is aware of your anorexia. Were you referred to a specialist in the past to help with that? If you are concerned about relapsing and are starting to lose weight it sounds like you know you should get help now rather than wait for it to get out of control.

Again, good luck and sorry I can't be more helpful.

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My story is kind of similar. I suffered from bulimia and terrible IBS, athsma, gastrointestinal disorders, auto immune everything. For two decades, my PCP just kept giving me different medications. It wasn't until my dad drug me to his lupus specialist that within one day, I found out I had fibromyalgia, lupus, and celiac. No wonder I felt compelled to throw up. It was my body's way to rid itself of what I deemed comfort food. When we are sick, what does mommy tell you to do? Tea and toast.... Now that I am gluten free, I have not felt the need to throw up once. Unfortunately, when I have a dietary mistake, I still can throw up involuntarily for days. Two years ago, four days into one such episode, I passed out, hit my head on the kitchen counter and now suffer focal seizures and specialists at UPMC found a boatload of other auto immune disorders. Name an organ...even my blood! IPT anemia! Well, I'm in good hands.

But the point is. I believe that eating disorders quite certainly are associated with celiac. Mine was never a question about body image just trying to feel better. Good luck. I know it is hard. Especially in the beginning when we think we can cheat. Regular bread and other goodies no longer look so good when faced with the alternative... God bless. Izzie

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