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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.

Blood Tests And Gluten Challenge
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6 posts in this topic

Hi. I'm new to the forum, but not new to celiac disease. My daughter, now 46 was born with it. I was told I probably had it (by a physician) but never tested until this yr. First test I had been strictly gluten -free for 2 mos. IGA and IGG were negative. So was the endomesial antibody IGA.

So I did a gluten challenge for three weeks. Tested again. Everything negative but Endomesial antibody went up to just enter the positive range, exactly 1:5.

I'm thinking now I should be on gluten a longer time and test again, because the longer I am on a ciet containing gluten, the more digestive distress I am having.

1. Can anyone explain what the higher endomesial antibody test results might indicate? Should I pursue more testing after a longer gluten challenge?

2. What is an ARA test? Should I have had it or did I already under one of the other names?

3. The nurse read my report to me over the phone, at my request, and mentioned a term that included the words tissue transference (not sure I got it right, but the number she gave me on that was 13, whatever that may mean.

I will meet with my dr. and get these things clear, but frankly I don't think she knows that much about celiac disease or the tests.

I'd like to go armed with the right questions to ask! :)

Thanks for sharing iwhatever nformation you can. Elsie

p.s. I've suffered digestive problems all my life, sometimes called colitis and more recently irritable bowel or "food sensitivities." After being treated for non-hodgkins lymphoma two yrs. ago and learning the higher risk for that among Celiac patients I feel I need to get serious about a definite diagnosis to preserve my present health.

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Here's a great site for explaining all those acrnyms:

http://labtestsonline.net/

I hope you find an answer soon. It sounds like you would definitely benefit from a gluten-free lifestyle.

Hope this helps!

Karen

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Karen, thanks. I checked the site and obtained some useful information. Elsie

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I think I may be able to help.

I think the test (#3 on your list) is called Tissue transglutamase

Here is a link to a laboratory test information guide for this test:

http://www.lhsc.on.ca/cgibin/view_labtest....mase%20antibody

If this was the test you had and you had a reading of 13 than I think it means you MAY have tested positive for celiac (I'm not a doctor!). It says on the website that a normal reading is less than 10 U/ml. But it also says "Tissue Transglutamase may give persistent mildly elevated results in the absence of disease". Definitely worth looking into! Of coarse check this info with your doctor.

Tissue transglutamase is the blood test that I had and I was told that this blood test is vey specific for celiac disease.

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Different labs use a different reference range. For the Tissue Transglutaminase test most labs say under 20 is negative, a few use under 10 as negative. It is the most specific bloodtest for Celiac.

ARA is Anti-Reticulin Antibody. It is as far as I can tell an outdated bloodtest that very few doctors or labs rely on anymore for Celiac testing. It is still included in some celiac panels though. On mine it said I was negative for the screening test for it, so the actual test was never performed.

The fact that your IgA endomysial antibody went up when you went back on gluten is an indication that gluten may be causing your symptoms, but if you want a definative diagnosis you would have to go back on gluten for anywhere from 3-6 months or more to get more accurate test results. Otherwise you could just continue on the gluten free diet and see if it helps. I went back on gluten for two months and it was not long enough to show my doctor the damage she wanted to see to give the diagnosis of Celiac. I opted for Enterolab testing to get my answers. I am very happy with their testing methods and it is certainly an option. You can check them out at http://www.enterolab.com

God bless,

Mariann

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ARA can - as far as I've been able to discover - indicate either autoimmune kidney problems as well, but usually celiac. It's actually relatively specific (in theory), but not very sensitive. (Plenty of celiacs won't have it raised.) That, actually, was my only positive test. (I couldn't get any values on the rest, so I don't know if they were borderline.) When I combined that with a positive result when going on the diet - and doing a dietary challenge - I took that as my answer. It is an indirect test though, and definitely not too many doctors run it any more.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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