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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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Son With Weak Positive Score And High Immunoglobulin, What Does That Mean?

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Hi. My father was Dx with celiac disease a few years ago and I just recently realized I have many symptoms as well. I have not tested yet becuase I was using steroid cream to treat eczema, so I went off them to test. In the meantime, I decided to test my kids. The only tests that were done were the (tTG) IGA and the Immunoglobulin A, Qn, Serum. I would really appreciate some help interpreting the results:

My 13 yr old daughter's score was in the negative range (2 on a range of 0-3) for the (tTG) IgA and her Immunoglobulin A was in the normal range as well. My 10 yr old son's score was a 4 (4-10 is considered a weak positive) and his Immunoglobulin A score was high (not sure of that number yet). My 8 yr old sons score was >100 (so very high positive) and his Immunoglobulin A score was in the normal range.

None of my kids have a huge amount of symptoms. They all have eczema to some degree and have had speech delays as well. The older two no longer have speech therapy though, just my younger son still continues with speech therapy, and his speech was the most delayed of the three. My yonger son has also had digestion problems, with intermittent diarhea but he has had normal growth. He is delayed in reading and has a shorter than normal attention span as well. I think brain fog might very well apply to him at times.

My understanding so far is that my younger son clearly has celiac disease, and futher testing may even be avoided with a sympathethic doctor. We have a Ped GI appt for him in two weeks and plan on starting him gluten free in January. My daughter is negative for now - should I insist on more testing for her with other tests, or settle for this assesment and retest in a year or so? I have told her this is something she will have to retest for throughout her life. My older son probably needs more testing at this time- I'm not sure what my next step should be, further blood tests? I am confused at his score the most really, I'm not clear on what the high Immunoglobulin A score might mean coupled with the weak positive on the (tTG). Does that score indicate celiac disease, or something else? I confuse why that score would be high on him and low on his younger brother, so further insight on that would really be helpful. Thanks so much for any help you can give me!

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So, to update, my older sons score on the Immunoglobulin A was 287 and normal is 62-236, so again it was a little high.

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You need to get the full celiac panel done (can't remember it off the top of my head). Then, should the doctor say, an edoscopy. During this time they must be on gluten until all tests are done.

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I agree...full celiac panels for you all. Let us know if you need the list - I can post it later.

PS...all first degree relatives of a diagnosed Celiac should be tested every 3-5 years and more frequently should symptoms arise.

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My son and I were both recently diagnosed with Celiac and also both had high hemoglobins. I agree that you should have the full celiac panel done on everyone. Good luck to you. I know every situation is different but I was diagnosed and went gluten free a little over a month ago and it is really one of the best things that ever happened to me and for my son. To me, eating gluten-free is nothing given how much better I feel and how much more optimistic I am about my son.

Good luck!

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So why get a full panel with my younger son? His score is so high, I don't understand why he would need more blood tests. What more would they tell me? Maybe the endoscopy to confirm, but even then several studies have shown that if a score on the (tTG) IgA is 5 times more than normal it correlates at 100% with a biopsy. So I feel like I should push for Dx now - I don't need the biopsy to see he needs to go on the diet ASAP. Even if he somehow had a negative biopsy I would still feel like he needed to go gluten free, at least a trial. I want a Dx though, so if the Doctor insists on the endoscopy I would do it, I just hope he doesn't have to wait too long.

With the other kids, more testing makes sense to me...not sure I can convince my pediatrician, but I think the Ped GI will probably order it if she won't.

Can anyone tell me if the high Immunoglobulin A, Qn, Serum for my older son means anything? From what I understand a low score would be significant, not sure what a high score means.

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Sorry megsybeth, didn't see your post about that last question. I appreciate that information. I am sure finding out is for the best, and think the diet will be good for us, I just wish we could just get the testing done with already! Guess I need to be more patient, I just hate waiting for tests and appts and having to continue on the gluten foods knowing that it is quite probably causing us all a bunch of grief.

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My 10 year old son also had an abnormal high level for total iGA serum...and 2 on the tTG panel. Did you have his levels checked again?? Have you found out what a high iGA total serum means?

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We consulted my younger sons gastroentronologist, and he advised us to get the full panel. He didn't seem to think the high immunogloubin was important (and he seemed doubtful that the weak positive meant anything either). We went through another lab, (the first one sent the results to be interpreted at as Labrotory Corporation of America, and they lost some of other kids tests, so we didn't want to go back there) The second set of labs he came up with a score of 51 on the Tissue Trans. AB, IgA (with a score of 19 or less negative and 20-30 weak positive, and 31 or greater Moderate to Strong Positive). So his was clearly positive this time. His IgG and Endomysial tests were both negative. So we're still not sure what to think. He's got another appt with the gastroentronologist on Jan 15

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Not sure if this helps, but here goes:

tTG antibodies are usually associated with coeliac disease, but can be elevated in other disease processes too. They are a marker of tissue inflammation usually involving the gut.

endomysial antibodies (EMA) are highly specific to coeliac disease, and the skin manifestation of gluten intolerance, dermatitis herpetiformis. A positive result for EMA would point to celiac disease or DH.

IgA is tested to ensure that the patient is not IgA deficient. If a coeliac individual has low total IgA, then they may not be able to produce the antibodies that the coeliac panel is based on, therefore the results of the coeliac panel may be falsely negative.

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The second set of labs he came up with a score of 51 on the Tissue Trans. AB, IgA (with a score of 19 or less negative and 20-30 weak positive, and 31 or greater Moderate to Strong Positive). So his was clearly positive this time. His IgG and Endomysial tests were both negative. So we're still not sure what to think. He's got another appt with the gastroentronologist on Jan 15

You did not mention the DGP; did he run that one also, as it is very specific for celiac?

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Nope, we didn't have the DGP. Maybe the pediatric gastroentronologist will order that next? Really, I think he'll want to do an endoscopy now with him. With my other son he said he was fine skipping it since his IGA was over 100, that we could dx based on the blood test alone if I preferred that. But wiith these results for my older son I think the only way to be sure is the endoscopy. The thing is, even if the endoscopy is negative, with my dad, me, and my younger son being diagnosed now, I am not sure I'll really feel comfortable with my older son staying on gluten if the biopsy is negative. Seems like even if they don't find damage now, there will be soon.I'm not crazy about waiting to see damage, even if he's essentially asymptomatic right now(the only thing that could be a syptom is he has mild eczema and skin rashes).

Can anyone explain to me why the two IGA tests would be so different? I understand that the scales are different, but still his first was barely a weak positive, then a test just a few weeks later shows a score that is a moderatley high positive. I though the test was more standardized than that. It made me question my other kids who scored negative on the first IGA test, so I ended up doing the panel over for them as well. I think our pediatrician thinks I've gone a bit crazy!

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