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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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awick08

Self Discovery And Post Diagnosis Question

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My journey with a gluten intolerance started 8 years ago when I was 16, and hit rock bottom about 2-3 years later. I went to several doctors, which told me a different finding every time: chronic fatigue syndrome, adrenal exhaustion, IBS, reactive hypoglycemia, "nervous stomach," anemia, depression/anxiety, NORMAL, vitamin deficient, and even mono (which was misdiagnosed). I knew I had all of these things--except normal, but wanted to know what was causing all of them. To me they were just a list of my symptoms and not the root of the problem. So I kept chugging on with life, missing the max number of days in college, suffering from extreme dizziness and fatigue, vit D, C, K, B12, selenium and manganese deficiencies, constant D and C with severe abdominal cramping that would have me in tears, and the list goes on and on and on.

So last January, through keeping an intuitive mind and researching, I felt like food was the cause of all of this. What food though, I had no idea! So I decided to sign up for a food detox program with a local chiropractor that lasted 3 weeks, and included only chicken, fish, rice, most veggies and fruit. At the end of the 3 weeks we started gradually adding each food group back in, analyzing how each made us feel. I went through major withdrawals during the first week of the detox - craving sweets, breads and pastas horribly! After gradually adding everything back in gluten, dairy and eggs all disagreed with me. Gluten being the absolute worst. I cut them all out of my diet. My doctor did a blood, stool and saliva panel to see what was going on right after the detox, and the results showed a positive for gliadin antibodies in my stool, low RBC and hemoglobin counts, low cholesterol, vit D, B12, selenium and mangnesium levels, as well as very low digestive enzyme counts. She sent me home with vitamins, and told me to stick to my, basically paleo, diet.

I did, and now a year later I am feeling *almost* back to normal again. Every issue I had has subsided or gone away completely! I don't know if anyone else has had this issue after going gluten-free, but my periods have become very irregular and light, and still low libido (and I'm 24, and happily married!!) I went back to my chiropractor/nutritionist for this issue and she looked at my previous bloodwork. We are working with my endocrine system with herbs and glandular supplements right now. She suspects celiac disease, but since I have been gluten-free for so long it probably wouldn't be logical to test for it. Has anyone been tested for it after a year of being off gluten (with some cc here and there) and shown a positive?

I have enjoyed reading everyone's success stories after their discoveries with gluten, and it's so nice to know that we have a place like this to express our frustrations, thoughts, and journeys. Thanks for "listening" to mine. :)

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I was scoped and tested after seven months gluten-free and all was negative, even with what my doc called some of the best celiac 'scopers in the country.

 

So getting a positive diagnosis after so long would be extremely rare I think. You could always get the gene test, which doesn't require eating gluten and can *help* rule celiac in or out, though not definitively.

 

You can also go back on gluten for the tests, or just keep up the good work and stay healthy. I do understand wanting a diagnosis, believe me!

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