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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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aimless75

Borderline Ttg Igg For My 9 Year Old

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Hi, This is my first time here and I have a few questions I'm hoping someone can help me with.  I went gluten-free 2 months ago and noticed a big difference in my energy level and when I reintroduced gluten I started feeling foggy and tired again so I took it back out and felt better again.  So, I don't think I have celiac but rather a gluten sensitivity, since I don't have to many GI problems.  Anyway, I asked my GP to test me for celiac but I had already gone gluten free but she said it wouldn't matter (which from what I read, is not right).  She only rain Transglutiminase IgG and IgA, and both were .22  (<.90 is negative).

 

Anyway, I decided to have my 9 year old daughter checked for a bunch of things since she has fallen down quite a bit on her growth charts the last few years and has stomach aches a lot.  She is in the 6th%tile for weight now. Her thyroid and everything has come back normal.  

 

Her tTg IgG is .87 and IgA is .36 (<.90 is negative).  Should I be concerned that her IgG is so close to being positive or is the IgA a better indicator?

Those were the only tests that were run on the celiac panel.  I was thinking of asking for a few more tests like AGA or DGP.  Any suggestions?

 

Thank you,

Amy

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I would recommend DGP IgG, that one is very specific for celiac.

 

Over here in Europe they often use Ttg-IgA and DGP-IgG and total IgA, those three.

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I agree with Nora, the DGP is known to be a superior test for celiac disease in children. It would be a good one to request.

 

This is a report on celiac disease. On page 12 it discusses how sensitive the tests are (menaing how likely they are to catch cases of celiac disease). The TTg IgA misses 5-25% of all cases of celiac disease. http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

I would be a bit concerned about the near positive tTG too. Those tests show intestinal damage is happening. It is not unusual to have low levels of tTG's in the blood but her's is very close to positive. If she will be continuing to eat gluten, I would have her tested, and test the DGP tests too. If that is negative still, and she will still be eating gluten, I would retest her every year or two because celiac can hit (full force) at any time.

 

It is very possible that she has Non-Celiac Gluten Intolerance (NCGI) too. It is thought by some that the AGA IgA and AGA IgG can show NCGI as well as celiac gluten sensitivity. They are the only tests that show a snesitivity to gliadin where as the other tests (DGP's, tTG's, and EMA IgA) test for intestinal damage. If you suspect NCGI, I would advise going gluten-free because it can affect your health to almost the same degree as celiac disease can - just the villi damage is missing.

 

And yes, you would have to start eating daily gluten again for at least 1 month (2-3 is better) to have an accurate test result. If you suspect celiac disease for yourself, you might want to have nutrient level testing done as celiacs are often low in iron, ferritin, calcium, D, B's, potassium and a few others like zinc. Thyroid disease is present in over 10% of celiacs too so you should get that checked as well.

 

Best wishes to you both.

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"So, I don't think I have celiac but rather a gluten sensitivity, since I don't have to many GI problems."

How you perceive your GI tract as functioning has no diagnostic bearing on if you have Celiac Disease, or not.

I'm not saying you aren't sensitive to gluten, quite the opposite actually, since you feel better off it.

What I am saying is you can't know without testing (which requires a trial). I'm not telling you to do a trial, either. What I'm saying is that you don't know, and you should NOT consider yourself "just NCGI"...

Which also brings up the issue that NCGI is NOT a "lesser" dx... To date, no one knows WHAT the health implications of NCGI is. It may be dangerous to underestimate NCGI. There are people in this board who have serious problems with gluten, and I would venture to say quite severe health issues because of it, who are classified NCGI.

I'm not trying to be a hard nosed b%$@# here, but this attitude pervades in the medical community and the gluten-free community - that NCGI is somehow less severe...including the ability to not be as careful about avouding gluten. And it needs to stop.

The truth is that medically, it is not known exactly what NCGI is or does - other than it doesn't show up on Celiac testing or cause intestinal damage severe enough to be called celiac disease, and it probably involves a different response from the immune system.

What is definitely known is that people who are NCGI can get very, very ill - apparently from gluten damaging their bodies.

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I agree with Nora, the DGP is known to be a superior test for celiac disease in children. It would be a good one to request.

 

This is a report on celiac disease. On page 12 it discusses how sensitive the tests are (menaing how likely they are to catch cases of celiac disease). The TTg IgA misses 5-25% of all cases of celiac disease. http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

I would be a bit concerned about the near positive tTG too. Those tests show intestinal damage is happening. It is not unusual to have low levels of tTG's in the blood but her's is very close to positive. If she will be continuing to eat gluten, I would have her tested, and test the DGP tests too. If that is negative still, and she will still be eating gluten, I would retest her every year or two because celiac can hit (full force) at any time.

 

It is very possible that she has Non-Celiac Gluten Intolerance (NCGI) too. It is thought by some that the AGA IgA and AGA IgG can show NCGI as well as celiac gluten sensitivity. They are the only tests that show a snesitivity to gliadin where as the other tests (DGP's, tTG's, and EMA IgA) test for intestinal damage. If you suspect NCGI, I would advise going gluten-free because it can affect your health to almost the same degree as celiac disease can - just the villi damage is missing.

 

And yes, you would have to start eating daily gluten again for at least 1 month (2-3 is better) to have an accurate test result. If you suspect celiac disease for yourself, you might want to have nutrient level testing done as celiacs are often low in iron, ferritin, calcium, D, B's, potassium and a few others like zinc. Thyroid disease is present in over 10% of celiacs too so you should get that checked as well.

 

Best wishes to you both.

Thank you Nicole for the info.  I have been reading a lot about it so I will ask for additional tests like the AGA and DGP.  My daughter is very analytical so it is a little tough to convince her to cut out her favorite foods without proof:)  They did check her iron, Vit D and ferritin which were ok. 

 

I have had thyroid disease for 20 years now - Graves when I was 18 and then 10 years later Hashimotos after my daughter was born.  I have on and off stomach issues and along with my mother having stomach problems forever and osteoporosis and thyroid disease, we have lots of risk factors for celiac or NC gluten intolerance.  I'm going to try to talk her into getting tested also.

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"So, I don't think I have celiac but rather a gluten sensitivity, since I don't have to many GI problems."

How you perceive your GI tract as functioning has no diagnostic bearing on if you have Celiac Disease, or not.

I'm not saying you aren't sensitive to gluten, quite the opposite actually, since you feel better off it.

What I am saying is you can't know without testing (which requires a trial). I'm not telling you to do a trial, either. What I'm saying is that you don't know, and you should NOT consider yourself "just NCGI"...

Which also brings up the issue that NCGI is NOT a "lesser" dx... To date, no one knows WHAT the health implications of NCGI is. It may be dangerous to underestimate NCGI. There are people in this board who have serious problems with gluten, and I would venture to say quite severe health issues because of it, who are classified NCGI.

I'm not trying to be a hard nosed b%$@# here, but this attitude pervades in the medical community and the gluten-free community - that NCGI is somehow less severe...including the ability to not be as careful about avouding gluten. And it needs to stop.

The truth is that medically, it is not known exactly what NCGI is or does - other than it doesn't show up on Celiac testing or cause intestinal damage severe enough to be called celiac disease, and it probably involves a different response from the immune system.

What is definitely known is that people who are NCGI can get very, very ill - apparently from gluten damaging their bodies.

I simply stated that I am probably NCGI and so I'm not sure how you got that I said it was a "lesser dx".  I do not believe that at all, I know that celiac is only one small part of the bigger picture of gluten sensitivity.  After having thyroid disease for 20 years, infertility, multiple miscarriages, bacterial gastritis bouts, and anxiety issues and come to find out that those are all symptoms of gluten sensitivity, I only wish I  knew all of this a long time ago.  I was only asking a question about my daughter's blood tests.

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I simply stated that I am probably NCGI and so I'm not sure how you got that I said it was a "lesser dx". I do not believe that at all, I know that celiac is only one small part of the bigger picture of gluten sensitivity. After having thyroid disease for 20 years, infertility, multiple miscarriages, bacterial gastritis bouts, and anxiety issues and come to find out that those are all symptoms of gluten sensitivity, I only wish I knew all of this a long time ago. I was only asking a question about my daughter's blood tests.

I'm sorry, I didn't meanto imply you said it was a lesser dx...i wrote that in reference to what NCGI has a reputation for. What you did say that was you think you are NCGI because you don't have GI symptoms - and my point is that lack of gi symptoms is not a diagnostic tool.

I noticed you mentioned you have other AI conditions - which would actually tip you to the Celiac side. The fact that your daughter tested almost positive on one test indicates a strong possibility of Celiac for her (as others pointed out)...which again, tips you to Celiac...since it does run in families.

My point is not to discount Celiac in yourself (which would make a stronger case for Celiac with your daughter).

Is it important to know the difference? Yes, if a person thinks being NCGI means one doesn't have to be as strict as a Celiac with a gluten-free diet. It could also make a difference in getting proper monitoring - nutrients, etc.

What I wish would happen is that people (this includes doctors - perhaps doctors most of all) will stop assuming Celiac or NCGI based on what s/he perceives as symptoms. In recent studies, it is becoming obvious that GI symptoms are not necessary symptoms to indicate Celiac - yet the myth pervades.

And I have an 11 year old son...who has symptoms and tests negative...he also would do better with "proof" he needs to be gluten-free. I understand that part, definitely.

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I simply stated that I am probably NCGI and so I'm not sure how you got that I said it was a "lesser dx".  I do not believe that at all, I know that celiac is only one small part of the bigger picture of gluten sensitivity.  After having thyroid disease for 20 years, infertility, multiple miscarriages, bacterial gastritis bouts, and anxiety issues and come to find out that those are all symptoms of gluten sensitivity, I only wish I  knew all of this a long time ago.  I was only asking a question about my daughter's blood tests.

Until I've started researching celiac and gluten sensitivity I was probably in that group of thinking if you didn't have celiac then you were fine.  Now, after reading multiple books and studies it's amazing that this information is not out there more and that more docs don't test for it or mention it more.  I have been back to being gluten-free and been cooking and making lots of things with different flours and my daughter doesn't like any of it, so if she is dx it's going to be tough.  My middle son on the other hand usually likes it all so he would be easier to convince.  I know I'm going to have to fight a little with my doc and pediatrician to get more thorough tests done without having to go to an outside lab that I would have to pay for.  My husband is also one of those that if the blood tests are fine, then everything should be fine.  When I told him she was very close to the positive range he said "but she's negative!"

Is there any other tests you would recommend for me since I'm already gluten free?  After 2 months of being gluten-free, I added gluten back into my diet for 4 days before the test which was negative, and then went on vacation for a week and ate some gluten.  Since I came back last week, I took it back out, and since then I have had horrible abdominal pain, bloating, gas, diarrhea for a week.  I've been very strict all week of being gluten-free but no matter what I eat my stomach still hurts and is bloated.  I am being tested for a bacterial infection but haven't gotten results back yet.  My doc thinks it's probably viral, but I'm not throwing up.  I think maybe I inflamed myself by adding gluten back in and then was more susceptible to a bacterial infection.  I've thought of testing a stool sample through a private lab online that says they can test gluten sensitivity in the stool for up to a few years after being gluten-free.  Thanks for any advice or info!

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Until I've started researching celiac and gluten sensitivity I was probably in that group of thinking if you didn't have celiac then you were fine. Now, after reading multiple books and studies it's amazing that this information is not out there more and that more docs don't test for it or mention it more. I have been back to being gluten-free and been cooking and making lots of things with different flours and my daughter doesn't like any of it, so if she is dx it's going to be tough. My middle son on the other hand usually likes it all so he would be easier to convince. I know I'm going to have to fight a little with my doc and pediatrician to get more thorough tests done without having to go to an outside lab that I would have to pay for. My husband is also one of those that if the blood tests are fine, then everything should be fine. When I told him she was very close to the positive range he said "but she's negative!"

Is there any other tests you would recommend for me since I'm already gluten free? After 2 months of being gluten-free, I added gluten back into my diet for 4 days before the test which was negative, and then went on vacation for a week and ate some gluten. Since I came back last week, I took it back out, and since then I have had horrible abdominal pain, bloating, gas, diarrhea for a week. I've been very strict all week of being gluten-free but no matter what I eat my stomach still hurts and is bloated. I am being tested for a bacterial infection but haven't gotten results back yet. My doc thinks it's probably viral, but I'm not throwing up. I think maybe I inflamed myself by adding gluten back in and then was more susceptible to a bacterial infection. I've thought of testing a stool sample through a private lab online that says they can test gluten sensitivity in the stool for up to a few years after being gluten-free. Thanks for any advice or info!

What yours experiencing is quite normal for someone who has a gluten problem, and goes on/off gluten. Unfortunately, once someone goes off...the body gets happy about gluten-free quite quickly, and protests quite loudly when it is added back.

I suggest digestive enzymes with meals - like Enzymedica Digest Gold and probiotics. Check all supplements for gluten (Enzymedica is gluten-free). If you have too much acid on your stomach, try an antacid. If you aren't digesting food (it sits in your stomach) try betaine hcl.

Unfortunately, this is normal. Your reactions can get more obvious once going gluten-free. Good news, you'll know when you've gotten into gluten. Bad news, life can be temporarily miserable.

As far as testing goes, you could do a gene test...it will show if you have the most common Celiac related genes. As far as antibody testing goes, all are dependent upon eating gluten for accuracy. There are mixed opinions about stool tests - you can find 100 of them on this site (opinions). Bottom line, stool tests won't prove anything to an md.

As far as cooking goes - there's a learning curve. I suggest baking using the recipes provided by the gluten-free flour manufacturer. That seems to work better, IMO. Also, I found better luck using almond and coconut flours, or sorghum based blends (no rice flour). Try elanaspantry.com and thespunkycoconut.com for ideas. Rice flours can feel gritty and gluten eaters can feel it. Another alternative is to not try baking for a while and concentrate in cooking basics gluten-free. Let them eat gluten outside the home. And finally, if you do bake, make new recipes only - don't try to convert old recipes - because they'll definitely notice the taste difference. Introduce those later.

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