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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.

Still Confused About Test Results
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5 posts in this topic

My 14 year old was recently diagnosed as gluten intolerant by Enterolab. I'm a bit confused because her blood test came up negative. She has been several different doctors due to health problems and some say that she isn't gluten intolerant unless the blood test is positive. Several people have told me that if you don't have Celiac then you aren't gluten intolerant. My understanding is that Celiac is just when the intolerance has caused damage to your intestines.

My daughter's results showed antigliadin IgA antibody was elevated. She does not have high enough intestinal IgA antibodies to show an autoimmune reaction, which is strange because she has autoimmune symptoms. She also had a positive genetic test which shows that she has the gene predisposing her to both Celiac and gluten insensitivity.

I truly believe that my daughter is sensitive to gluten but I'm trying to figure out an explanation to tell other people how she can be gluten insensitive but not Celiac.

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As far as I know (which isn't much!), I was under the impression that gluten intolerance is when your body produces a reaction to the presence of gluten, making you sick. Celiac disease is the point at which the villi in the intestines are actually damaged and it is visible. I may be wrong, correct me if I am, but this is what I had read awhile back. I would tell people that your daughter tested positive to having an intolerance to gluten through lab work. Hopefully that will be enough to convince them? Good luck!

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The blood tests won't be positive until you have done sufficient damage to your intestines. You can have symptoms before you are sick enough to have a positive blood test.

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Now people (doctors and others) are questioning whether or not the stool test is sufficient proof.

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Hi I was watching a good video on youtube about celiac.

It's a recording of a presentation by the William K. Warren Medical Research Center for Celiac Disease. In it the director, Martin F. Kagnoff, M.D., talks about different sensitivities to gluten

Celiac - classically the symptoms of intestinal damage and associated diarrhea, nutritional deficiencies, bloating, headaches, and failure to thrive in kids. In this case the blood tests will show high IgA unless there is a deficiency of overall IgA, which has to be tested for. There is also cryptic celiac with few or no symptoms, possibly negative labs and intestinal biopsy. If you did a genetic study these people have the markers though. According to a Mayo study some kind of damage is still happening because people with this kind die earlier than people without any response. Also, lab tests and even intestinal biopsy will be negative if the person has been on a gluten free diet.

Then there is Gluten sensitivity - same symptoms as classical celiac - gas, abdominal bloating and discomfort, diarrhea, headaches and so on, but blood tests are negative. He says at the end in the question time that since gluten molecules are huge it could just be a reaction to a different part of the molecule and wouldn't show with the standard tests. From the doctor's point of view they want to do all the tests including a gluten challenge of two months on gluten then repeating the blood work and intestinal biopsy. The treatment is just gluten dietary avoidance.

Finally he talks about wheat allergy which can be a reaction to other parts of the gluten molecules or other parts of wheat or can be mediated by a different part of the immune system - IgE or T cells. Again as doctors they'd like patients to do the full gluten challenge and testing but the treatment is dietary avoidance. The most dangerous type of this can produce anaphylactic shock in people who exercise after wheat ingestion (!).

Long story short...no test is definitive for all kinds of gluten or wheat reactions. Hope that is helpful.

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    • Newbie: mother to coeliac kids
      Are there any foods, like broth, that don't make your son feel sick?
    • Newbie Mom - How is my son feeling?
      I agree. As an adult its a little easier to withstand the rolling of eyes and exaggerated sighs from people who think you are over reacting and being too fussy.  My youngest has anaphylaxis to fish and seafood and people are incredibly understanding and careful - but it seems celiacs has become a "fad" due to gluten intolerant people removing credibility from true celiacs.  Adults can argue but kids are vulnerable. Socially its really isolating for them.    I totally relate to the waiting on endoscopy. For my very sick 12 year old the 8-9 weeks we waited for sheer hell and I felt I was feeding him rat poison. Now my 17 year old is waiting on his, booked for later this week.  Its a total nightmare waiting knowing you can start the healing if only you could stop feeding them gluten.  But I figure for future reference, having a solid diagnosis via biopsy is important. Good luck to you and your son.
    • Newbie Mom - How is my son feeling?
      Hugs to you and your daughter. My son and I are in the same boat, or at least,  paddling alongside your boat.  At their age being scrupulous about their diet is not only incredibly hard but socially isolating. Adults consider celiac people to be a pain so imagine what their young friends think.  Feeling so unwell and having no energy adds to their distress. And the thing is - I don't think at that age that they really understand that even the slightest bit of gluten will set them back badly.  I know my son is convinced one sweet won't matter. It really really sucks.  
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      No one in my wider family gets it, although my sister is certainly trying to understand. She gets that I will bring all food for my coeliac kids when we come for meals and is okay with that.    For other social events, I will suggest the meal is at my place so I can control the gluten.  But my biggest battle is my children's father (my ex husband) who refuses to get it, and thinks I am being stupid and trying to prevent him seeing V.  I have offered that V can visit but not eat nor stay the night.  Ex does not have the means or the brains to manage gluten free meals.    At this point it looks like I may need to go to court to get an order to prevent V from being forced to go and get glutened. I really really hope to avoid this, but its not looking good. 
    • celiac disease is psychosomatic
      I guess it's the "natural flavoring" which throws me off. It could or could not contain gluten and it's in so many products. I haven't been on a gluten-diet for as long as you...6 years. I may have bee undiagnosed and untreated for more than 25 years since i had signs that went back to chidhood. Yes, I have balance/anxiety/neuro issues. I know anxiety is connected to damage in intestines, but I don't know for sure if celiac causes balance/neuro issues. I was already tested for brain ataxia, but I didn't get too far on that. Well, there wasn't an exact test, but the neurologist noted that I was walking straight or something on those grounds so I must not have it. I know studies have shown Transglutaminase 6 antibodies indicate gluten ataxia, butthat test is not yet available to the public.  
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