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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.

Tests Negative Every Time.
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3 posts in this topic

I have every typical symptom and have been to the doctor quiet a few times to be tested. They have only done bloodwork on me. Is that the normal way of testing? 

Is there anything else I can do besides cutting out gluten from my diet and daily life to help these symptoms subside? Thank you!

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For every person who tests positive for celiac disease there are potentially six or seven others who have the same symptoms but test negative, currently termed non-celiac gluten intolerant because they haven't derived any other name for them (the medical profession only recognized the condition last year!).  You may well be one of them, and apart from eliminating gluten and feeling better, there is nothing else you can do.  Doctors will generally not perform the confirmatory biopsy with negative blood results and the odds that you would test negative on biopsy are pretty high.

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I have every typical symptom and have been to the doctor quiet a few times to be tested. They have only done bloodwork on me. Is that the normal way of testing? 

Is there anything else I can do besides cutting out gluten from my diet and daily life to help these symptoms subside? Thank you!

Yes, blood work is usually the first step. For most people that works out (but not all) just make sure they ran all (or most) celiac blood tests (DGP IgA and IgG, tTG IGA and IgG, EMA IgA, total serum IgA controltest, and possibly the older AGA IgA and IgG ).

 

Some celiacs are also lactose intolerant. That can make the same, or very similar symptoms to, gluten intolerances. Perhaps try dropping dairy for a while along with the gluten.

 

Some people are left with nutritional deficiencies too. You might want to have your D calcium, B's, iron, ferritin, and potassium checked; anemia is common too.

 

As for healing, probiotics can be helpful. Avoiding processed foods is good. L-glutamine helps with muscle (intestinal) repair and could hgelp you feel better faster.

 

Good luck!  :)

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    • Starting out
      I guess you must have to be a member then. I don't know because I am a member. It doesn't cost anything & I've never gotten any junk mail from them or anything unpleasant.  Gee, I didn't even think about that when I posted the link. OOPS! Let me know if you need me to copy & paste it because I will if you want.  
    • Starting out
      Hey, do you have to be a member of Medscape to see the article?  I could not get in pass the sign-in page.  
    • Starting out
      Ugh!  Run from that doctor.  Are you located on Mars?  Kidding aside, here's the deal.  If you go gluten free just to test it out and you feel good, then you might think you have a gluten issue.   A few months or a year go by and you realize that this is HARD.  REALLY HARD.  So, you start to cheat.  You get sloppy.  You start sharing a toaster.  Your symptoms come back, but you don't worry about it or maybe you start to get violently ill.  Symptoms so different from your old symptoms that you think you must have something else.  (You could be the type of person who makes a decision and sticks with it.  But those are rare folks.)   I could go on with more stories, but type in lymphoma in our forum's search box.  Look at member's who were misdirected by their physicians and who have had celiac disease all along.  Now they are dealing with cancer.   It is not my intent to scare you into thinking you have cancer.  The odds of you having it are slim and none.  I am trying to scare you into finding another doctor who really CARES about you and follows a normal standard level of care (like reading currant medical journals or checking Dr. Google, like my ER neighbor doctor does because he can not know everything!) It's just a simple blood test.  So easy.  If negative, then give the diet a try!
    • "Celiac disease prevents absorption of iron"
      Well, you are no longer anemic, so that's great!  As long as you are healed, you should be able to absorb iron easily.   Of course, there could be other issues that would prevent you from absorbing iron as villi damage can occur from many things other than celiac disease.   Want to know for sure where you stand?  Ask your doctor to check your iron and iron store levels the next time you have a physical.
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