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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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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kmgd99

My son's lab results, some elevated

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My son was dx'd with celiac disease 2.5 years ago and has been gluten-free ever since. I recently had his labs checked and am awaiting a call from the doctor. The pediatrician ordered more tests than the GI normally does so these results are unfamiliar. His ttg looks fine but gliadin is crazy high. What does this mean?

Gliadin(Deamidated) Ab, IgA Value 2.7 U/mL <15.0 U/mL  
Gliadin(Deamidated) Ab, IgA Negative   Negative  
GLIADIN(DEAMIDATED) AB, IGG, VALUE 551.8 U/mL <15.0 U/mL H
Gliadin(Deamidated) Ab, IgG Positive   Negative A
Tissue Transglutaminase Ab, IgA Value 8.9 U/mL <15.0 U/mL  
Tissue Transglutaminase Ab, IgA Negative   Negative  
Tissue Transglutaminase Ab, IgG Value 40.5 U/mL <15.0 U/mL H
Tissue Transglutaminase Ab, IgG Positive   Negative A
IMMUNOGLOBULIN A 92 mg/dL 51 - 259 mg/dL

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His TTG IGG and DGP IGG are both very high. I think it would imply he's not gluten free enough. I've read that children should recover quickly once going 100% gluten free compared to adults. I'm sure the others here will give you some great ideas on how to make sure he's gluten free from now on. It's not easy.

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Refractory Celiac is one possibility, but I would say it is more likely he is getting gluten somewhere. Questions with possable reasons.
Does he eat out at restaurants, probably getting CCed if yes.
Is the house gluten free. If not then he is probably getting CCed in the house.
Does he eat a ton of processed foods? In many cases celiac that eat lots or "Gluten Free" processed foods that contain traces of gluten can build up beyond the recommended safe gluten threshold for many celiacs. There was a study done on this by GFWD short time ago.
For now transition to whole foods only diet, remove processed foods, and only eat at home. Cook in dedicated gluten free cookware, take extra precautions rinsing raw produce before cooking, using freezer paper for prep surfaces, perhaps liners for crock pots, and some cheap nordicware microwave cook ware to make sure the cooking implements are not glutened. I wish you luck in figuring it out.
Of course it could also be peer pressure and eating gluten foods and lack of caution for daily life...How old is your son?

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Posted (edited)

Thanks for your response. My son is 9 and has an extremely limited diet due to texture issues, etc. I know that he is not eating foods due to peer pressure and takes the gluten-free diet very seriously so the problem must be cross contamination at restaurants as well as processed gluten-free foods that aren’t truly gluten-free. Ugh. Another troubling thing is that his GI doc (recently retired) never did this full range of tests so we thought my son was doing great! I guess we are back to square one. Moving to a whole foods diet for him will be extremely difficult but must be done.

 

Edited by kmgd99

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It sure does seem like he is getting gluten into his diet.

http://www.cureceliacdisease.org/faq/in-follow-up-blood-testing-why-would-ttg-be-negative-and-dgp-be-positive/

How does he feel?  Was he symptomatic when he was first diagnosed? 

Cross contamination can be a huge problem.  Best to avoid eating out until those elevations are reduced.  I never had a positive on the TTG tests only the DGP.  I struggled last year after taking a hit (unknown source).  I buckled down and did not eat out (even at a 100% gluten free restaurant) for a year.  My house is 100% gluten free as we have two people who need to be gluten free.  

Just recently a new study has shown that too many celiacs are getting gluten exposures:

https://www.npr.org/sections/thesalt/2018/04/03/598990638/when-going-gluten-free-is-not-enough-new-tests-detect-hidden-exposure

I would try to stick to non-processed foods as much as possible.  I wish you both well.  

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What an incredibly newsy and good article that is from NPR! A lot of useful things in there, including the urine and stool tests.

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Thank you so much for these articles and the advice. I appreciate it so much. He was symptomatic pre-diagnosis. He battled abdominal pain, constipation, horrible gas then he got profoundly anemic. Plus, he was small compared to his classmates (the rest of us are tall). After going gluten free (or so we thought) those symptoms disappeared and he began to grow and gain weight. It took about 10 months for his Ttg to go from  greater than 198 to 7. He does not seem to have symptoms now.

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On 4/21/2018 at 3:04 AM, tessa25 said:

His TTG IGG and DGP IGG are both very high. I think it would imply he's not gluten free enough. I've read that children should recover quickly once going 100% gluten free compared to adults. I'm sure the others here will give you some great ideas on how to make sure he's gluten free from now on. It's not easy.

I have a question plz, my son is the opposite his TTG IGG IS NORMAL , but his TTG IGA IS HIGH WELL BETTER THAN 6 month ago but it’s getting better slowly ?

any advice?

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EDD418E9-017F-46EA-90EA-2D76CFFDE975.jpeg.cc276b1bd2ceaef1f02f110e77ca7e46.jpeg any help please to explain six month ago the TTG - IGG WAS HIGH now it’s normal, the TTH IGA is better but still high?

we are on a very strict  diet .

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12 minutes ago, Nookie2017 said:

EDD418E9-017F-46EA-90EA-2D76CFFDE975.jpeg.cc276b1bd2ceaef1f02f110e77ca7e46.jpeg any help please to explain six month ago the TTG - IGG WAS HIGH now it’s normal, the TTH IGA is better but still high?

we are on a very strict  diet .

It can a year or long for antibodies to come down (learning the diet, having setbacks, lots of collateral damage).  As long as the antibodies are in a downward trend, he is doing well.  Keep to the gluten free diet.  Avoid oats and honestly, try not to eat out until the numbers are normalized as that result of TTG IgA 875 is very high!  

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15 minutes ago, cyclinglady said:

It can a year or long for antibodies to come down (learning the diet, having setbacks, lots of collateral damage).  As long as the antibodies are in a downward trend, he is doing well.  Keep to the gluten free diet.  Avoid oats and honestly, try not to eat out until the numbers are normalized as that result of TTG IgA 875 is very high!  

Thank you very much for your reply, the TTG IGA was 1300 6 month ago... may I ask is it a good sign that the TTG IGG IS NOW NORMAL? I feel really sad I am working so hard and I check everything, a question he loves biscuits so I give him only Schär products that’s ok or no? It’s gluten free he loves bread and treats but he is in very good growth health and he is slim not fat

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As long as the numbers keep going down it's a great thing.

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I just attended a lectures by Dr. Shelia Crowe who was the 2017 President of the American GI Association and Melinda Dennis, MS, RD at the celiac Center at Beth Israel in Boston (she has celiac disease).  It was discussed that the celiac antibodies tests are really for helping to diagnose celiac disease.  They were not intended to monitor dietary compliance.  But....they are the only tool ps in the toolbox for now.  Wait a minute,  there is the new Gluten Detective that may be able to determine a gluten exposure.  Even the Gluten Free Watchdog has mentioned it, so it could help: 

https://glutendetective.com/shop/

In any case, it does take a long time for antibodies to decrease.   I was going kind of crazy like you.  I have taken three gluten hits (hidden gluten) over the last five years and my DGP IgA antibodies were off the charts.  This last time, I developed autoimmune hives for six months.  I was going crazy thinking I had been getting glutened or that I was a super sensitive celiac.  I went on the Fasano diet.  Still my antibodies were elevated after a few months.  I finally caved and had a repeat endoscopy.  My villi have healed, but I have autoimmune gastritis.  At least I know that I am doing the gluten-free diet correctly.  I do not eat out except at dedicated gluten-free restaurants, do not eat oats and only used certified gluten-free grains (except for rice).  I am still not taking chances.  

What I have learned is that not everything is related to a gluten exposure.  I have other AI issues and probably some developing.  But my Doctors support my desire to handle everything without medications for now.  I only take thyroid replacement.  

Shar is good!  I like it because I react to Xanthan Gum which is found in many other gluten-free breads. I bake a lot using Pamela’s gluten-free Flour which does not contain Xanthan Gum.  We all can have unique intolerances and must find our own way!  

I hope this helps.  Hang in there!  

 

 

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45 minutes ago, cyclinglady said:

I just attended a lectures by Dr. Shelia Crowe who was the 2017 President of the American GI Association and Melinda Dennis, MS, RD at the celiac Center at Beth Israel in Boston (she has celiac disease).  It was discussed that the celiac antibodies tests are really for helping to diagnose celiac disease.  They were not intended to monitor dietary compliance.  But....they are the only tool ps in the toolbox for now.  Wait a minute,  there is the new Gluten Detective that may be able to determine a gluten exposure.  Even the Gluten Free Watchdog has mentioned it, so it could help: 

https://glutendetective.com/shop/

In any case, it does take a long time for antibodies to decrease.   I was going kind of crazy like you.  I have taken three gluten hits (hidden gluten) over the last five years and my DGP IgA antibodies were off the charts.  This last time, I developed autoimmune hives for six months.  I was going crazy thinking I had been getting glutened or that I was a super sensitive celiac.  I went on the Fasano diet.  Still my antibodies were elevated after a few months.  I finally caved and had a repeat endoscopy.  My villi have healed, but I have autoimmune gastritis.  At least I know that I am doing the gluten-free diet correctly.  I do not eat out except at dedicated gluten-free restaurants, do not eat oats and only used certified gluten-free grains (except for rice).  I am still not taking chances.  

What I have learned is that not everything is related to a gluten exposure.  I have other AI issues and probably some developing.  But my Doctors support my desire to handle everything without medications for now.  I only take thyroid replacement.  

Shar is good!  I like it because I react to Xanthan Gum which is found in many other gluten-free breads. I bake a lot using Pamela’s gluten-free Flour which does not contain Xanthan Gum.  We all can have unique intolerances and must find our own way!  

I hope this helps.  Hang in there!  

 

 

I am so grateful for all your help and I will hang in there and fight for my sons health, people helpful and lifting up like you are the reason.

 

thank you so much again

50 minutes ago, tessa25 said:

As long as the numbers keep going down it's a great thing.

Thank you so much for the lift up and kind words 🙏

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