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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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Danhunter

Diagnoising Yourself

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Well I finally managed to get some comfort in the fact that I am NOT ALONE in my frustrations with my doctor. I was thoroughly read threw all the post in relation to the question, and found many people needing confirmation of the disease which they themselves know to be true. Many say they go back onto wheat, barley and Rye and experience horrible symptoms much worse than before as their bodies are fighting off the toxic invasion much quicker, many cannot bare doing it more than a week and ask the doctor to take a blood sample as quickly as possible.

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Definitely get a new doctor. I am self-diagnosed and went gluten free, but followed up with a doctor after a few months. She was very understanding, and recommended the blood test even though we knew it would probably come back negative. She didn't know much about celiac at first but she RESEARCHED for me, and even called a GE to talk about the blood test results and ask how quickly the antibodies disappear after going gluten free. She said it was pointless to go back on gluten just to get a diagnosis when we can observe through diet what the problem is. She diagnosed me as "celiac presumptive" and that was good enough for me.

After ranting about doctors for ages myself, I'm actually pleased that my doctor has supported me through this. She wasn't able to put a finger on the problem herself, but she sure did listen to me when I came to her with a suspicion of celiac. And she was EXCITED for me, because she knew that I'd been dealing with a variety of different problems for many years.

You say that you're still having problems, but they have gotten any better. Some people take much much longer to heal, so you're on the path to recovery but aren't there yet. Make sure you're eating good food, and not just high calories to gain weight. You probably need to play catch-up with your vitamins and minerals.

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Welcome to the board. If you are already gluten free or gluten light testing for celiac will be a false negative. What are you typically eating? Going with whole unprocessed foods is the best for us at first. Are you eating many gluten free replacement foods? We can have problems with some of those especially if they contain Codex Wheat Starch (some consider it to be gluten free but many of us will react to it) Soy and dairy are also common for us to have problems with so you may want to avoid those for now.

Has your doctor tested your levels for vitamins and minerals? It can take some time for us to heal and be able to absorb nutrients properly so do have the doctor check. If for some reason the doctor won't then do supplement especially with the B vitamins. Don't oversupplement with iron unless you know you need to as too much can be toxic.

Do read the Celiac 101 thread as it has a lot of useful information. We have to be careful not only about what we eat but also how it is prepared.

I hope you feeling better soon but it does take time.

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Welcome to the board. If you are already gluten free or gluten light testing for celiac will be a false negative. What are you typically eating? Going with whole unprocessed foods is the best for us at first. Are you eating many gluten free replacement foods? We can have problems with some of those especially if they contain Codex Wheat Starch (some consider it to be gluten free but many of us will react to it) Soy and dairy are also common for us to have problems with so you may want to avoid those for now.

Has your doctor tested your levels for vitamins and minerals? It can take some time for us to heal and be able to absorb nutrients properly so do have the doctor check. If for some reason the doctor won't then do supplement especially with the B vitamins. Don't oversupplement with iron unless you know you need to as too much can be toxic.

Do read the Celiac 101 thread as it has a lot of useful information. We have to be careful not only about what we eat but also how it is prepared.

I hope you feeling better soon but it does take time.

I went gluten free before my testing (thinking I had systemic candida for years) so I also had a negative blood result. All my other labs and the past six years of "unrelated" health issues has my doctor also recommending a gluten free lifestyle. My question is whether I should ask for a referral to a nutritionist or RD? I have had B12 anemia and Vit D deficiency for at least two years. I am having difficulty digesting still despite probiotics and digestive enzymes. I have not seen a gastro, my primary has really been incredible and I know she does not think I am crazy or a hypochondriac. Do most folks with the malabsorption issues go to a nutritionist?

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