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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Immune Problems - Does This Match Others Experience?
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2 posts in this topic

Does this match with anyone else’s experience?

 

Until I went gluten-free two years ago (something that has transformed my health), I’d been chronically under par for nearly 15 years with recurring swollen neck glands, sore throat, conjunctivitis and exhaustion. I thought this was an immunological problem caused by having toxoplasmosis shortly followed glandular fever in my late 20s.   

 

The crisis point (which led to the gluten-free diet) came after the usual symptoms appeared  towards the end of holiday in France where I had been eating bread at every meal, which was very unusual for me. I developed an odd abdominal pain, which over the next few weeks got to so bad I could hardly walk and I ended up  in hospital on morphine. I recovered by not eating. Over the following months, I relapsed every time I got my appetite back. During that time, my weight dropped drastically and I developed a bend in my spine, I guess  from malabsorption. Doctors were confused. I cut out gluten from sheer desperation in case it helped. By the time an endoscopy and biopsy appointment came through, I was perfectly well (and had been pretty much gluten free for over the 6 weeks necessary). There was visual erosion of the duodenal folds but the biopsy was normal.

 

Like many people who are not 'officially' coeliac I struggle at times to not have a proper diagnosis but  feel so healthy now and the ill- effects when I do get accidently 'glutened' are so bad that I don't feel there is any doubt about avoiding gluten.

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This sounds somewhat similar to my case. 

 
I'm a active 42 year old male and since my teen years I had chronic fatigue, sore throat, swollen glands in my neck that would come and go (more coming than going in the last 10 years). I have been to no less than 8 ENT's and even had my neck glands biopsied (once at 21 and once at 31), both times they both came back as normal reactive glands, but there was a mystery to what they were reacting to? Every time I went to one of my many family docs, they said it was just allergic rhinitis and prescribed a steroid and a antihistamine (the steroid used to work a little, but the antihistamines never worked).
 
I have been to rheumatologists, oncologists, infectious disease docs, had numerous cat-scans, mri's, you name it and I had it! Most doctors would prescribe antibiotics, allergy meds and some even wanted to put me on antidepressants and anxiety meds!
 
Last year I asked my doctor about an allergy to wheat because I like my micro-brews; he said there is a blood test for a disease called celiacs, but I didn't need it because I wasn't having any stomach issues....Fast forward to a couple of weeks ago and I went to the family doctor with major upset stomach, back pain, rib cage pain and gas issues (along with my "normal" tennis ball-sized neck glands), and he said I probably needed my gallbladder out?? Before I went to that appointment I did a little research on celiacs and demanded a blood test for it and sure enough it came back positive!
 
I'm almost positive that celiacs was my problem the whole time. I'm in my first week of being gluten-free and I'm not feeling better yet, but my issues have been going on so long, I guess I will have to give it some time to see improvements. I'm so frustrated, but I'm happy to finally have a diagnosis I'm looking forward to feeling healthy again....
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