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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Diagnoising Yourself
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4 posts in this topic

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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    • Confused
      Your doctor is woefully mis-informed.  First of all you did get a positive on both (barely on the TTG IGA).  That does not mean you should be referred to a dietician.  You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac disease which is the GOLD standard level of care. Read the research here: http://www.cureceliacdisease.org/screening/ Ask your doctor for a GI referral.  Show them the print out out from the University of Chicago.  Be nice, but they'll do it.   Also, did your GP run a IGA deficiency test?  Do you have those results?   Best to email your doctor.  Reqest a GI referral.  Once it is in writing, your doctor has to act.  Let him know that what is required for a proper diagnosis per leading celiac research centers and the American GI Association. http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ DO NOT GO GLUTEN FREE UNTIL ALL TESTING IS DONE!  This is so critical.  Otherwise the tests will be invalid.  Then you'll be in diagnostic limboland!   After your GI consult, you can ask to be tested for vitamin and mineral levels.  Spend time learning about celiac disease and the gluten diet.  Learn about cross contamination and hidden sources of gluten. Again, DO NOT GO GLUTEN FREE YET!  You can do anything you like, of course, but get the facts first!     
    • Could this possibly be related to celiac or a gluten intolerance?
      I too have more neuro than gastro symptoms...its so weird. I hope we both find answers soon!
    • Silent Celiac or Non-digestive symptoms
      My celiac diagnosis started with me seeking medical attention for an ongoing migraine problem. This lead to MRI's that showed white spots on my brain which lead to blood work that showed a positive ANA (1:640) and a trip to the rheumatologist. The rheumatologist suggested the biopsy and a referral to a GI specialist after he felt confident that I didn't have lupus. The funny thing is that I don't have severe tummy troubles. I have some bloating occasionally and gas along with differing bowel patterns but that's about it. The most annoying and troublesome symptoms for me are migraines, fatigue and sometimes I get a little achy. My results for the prometheus test were high, blood anti-bodies were present and my biopsy revealed Grade B2 villi damage (the worst classification according to Corazza, Roberts, Ensari). Anyway I guess what I am wondering is how long after being "glutened" will I have a migraine, vitamin deficiency or other neurological symptom so that I will know that I am in trouble? I feel like if I had the tummy trouble to go with this I would know when I have eaten something that has been cross-contaminated. I just want to heal soon and not risk further intestinal damage or lymphoma. Thanks for your reply!
    • ANA and Celiac
      Does anyone know if the positive ANA(1:640) I had back in January could be connected to my celiac diagnosis two weeks ago? Does ANA change with celiac or just other AI issues? Thanks!
    • Confused
      Hello,  I'm new to the forum and new to gluten/celiac. I had some abdominal discomfort a couple weeks ago and my doctor (Kaiser) at the last second said he'd also test my blood for gluten issues. Bottom line, last Sunday night i get the results which I didn't quite understand. TISSUE TRANSGLUTAMINASE IgG 1.06 Index <=0.90 Index Tissue transglutaminase IgA 0.91 Index <=0.90 Index Then i get an email from him saying you tested celiac positive, I'm referring you to a dietitian for a gluten free lifestyle (head exploded). After scouring the internet for days, I've read my fair share of good and bad celiac articles. Right now it seems like kaiser just wants me to go gluten-free which is fine if I have celiac disease, but I'm not sure what the numbers indicate or how bad they are, or how much potential damage has been done. Has anyone gone through a similar process? Do I need to ask for further tests?  I'm still in shock a bit I guess but really feel like I'm in the dark and reading everying on WebMD and other celiac sites gives me hope and crushes my dreams at the same time. By the way I'm 35 and male, if that matters.   Thanks
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