Bad Blood Test Results

[MomBTired]

I'm looking for help. My son was diagnosed with celiac over 2 years ago and we struggle getting his Transglutaminase IgA at normal levels. Is this even possible? Has anyone here been diagnosed with celiac and gotten your levels to normal?

 

Thanks

[ravenwoodglass]

Welcome to the board. How much have the levels come down and how high were they to begin with? How are his symptoms? 

If the numbers are still coming down and his symptoms are under control it can just be the levels are going down slowly. That can happen from what I understand.

If you haven't already be sure to check out the Newbie thread at the top of the Coping section to make sure there is not gluten sneaking in somewhere. Gluten can be pretty sneaky especially if only one person in the home is gluten free. Most doctors don't tell us about stuff like needing a dedicated gluten-free toaster and separate condiments like mayo and butter etc.

[MomBTired]

Actually, he has his own toaster, his own butter (which I also cook dinner with), his own peanut butter, etc. Dinner is always gluten free except pasta night then his is drained before ours and use separate spoons. We know when he is glutened because he has dermatitis herpetaformis. I believe he was at 95 when we started this battle, now he's at 32. 19 and under is normal they say. We stick to major brands since I can easily find out if the food is gluten free. We haven't seen any dermatitis since October, but the normal count just isn't happening

[kareng]

Your not using the same colander to drain or rinse non-gluten-free things are you?  There is really no way to clean each and every teeny hole to get the gluten out.  You shouldn't be rinsing fruit or draining gluten-free pasta in the gluteny one.

 

You say that you know he is getting glutened when he gets DH.... getting glutened will keep the antibody levels up.  Is he old enough that he is eating at school or a friend's house?  Maybe he is cheating on  purpose or accidentally?  Sometimes kids think - Rice Krispie treats at home are OK... they must be fine at Johnny's house, too.  They don't realize that you are using a special Rice Krispie.

[MomBTired]

He's 19 and extremely careful since the skin disease gets incredibly nasty if he would sneak. He isn't. We have a metal strainer so I never thought about that since I do scrub it with lots of soap. He has been going to a college luncheon at our church. The moms taught themselves about gluten but I just cut that with this test results. He can bring his own food. I also took away his Chick Fil A because we really do not know if someone touches a bun then his grilled chicken. There isn't much more to take away

[nvsmom]

He could just be slow to have his numbers come down.  It is unusual for it to take that long, but it does happen.  There were a few people around here who took a few years.  After 1 year gluten-free, my number was almost normal, and that was while on steroids which will lower numbers too.

 

I would tighten up on the things you mentioned: no eating out, no food made by others (they may be making things gluten-free but who is to say the sugar or butter they used did not have traces of wheat flour or crumbs in it), and get him his own strainer.  Look into his medications, vitamins, shampoos, soaps and toothpaste too.... It is much, MUCH harder for a celiac to stay gluten-free when there is gluten in the home. Would you consider making the home gluten-free for him?  Also, if he has a girlfriend, and she is a gluten eater, she could be glutening him when they, um...ahem, kiss if she hasn't brushed and rinsed her mouth very well.... As a mom of slightly younger boys, that was awkward.  

 

Up to 5% of positive tTG IgA results are caused by reasons other than celiac disease: crohn;s, colitis, chronic liver disease, thyroiditis, diabetes (type 1), or a serious infection (doubt it in this case).  If his numbers stop coming down, consider looking into some of the other causes.  My guess is that the elevated numbers are celiac caused.

 

Best wishes.

[StephanieL]

There are times they just don't go to normal.  It sucks and it's so frustrating but if you have locked things down as you have said then they should go down more or it may just be how his body is.  We've been in that situation for years now.  Again, very frustrating (and my kiddo is only 8 so I KNOW he isn't getting anything anywhere else!)  

 

Hugs.

[MomBTired]

Well that's interesting, he does have autoimmune thyroiditis (Hashimoto's disease), along with it. He's a mess actually. 3 autoimmune diseases, after all these years we finally know what happened to his colon years ago which I will share when I don't have post restrictions anymore. He was labeled with Fibromyalgia but an adult neurologist said that's ridiculous. Apparently, autoimmune diseases can cause small fiber neuropathy or the other way around. My son has the autonomic type. So we are going to make it our mission to share his story with parents with small children stuck on the "it's all in your head" cycle.

[StephanieL]

Oh Mom!!! It is not in your head.   Again, I can completely understand your frustration! If his thyroid issue is under control with meds, that wouldn't be something I would be worried about but the others may be worth a look into.   My DS also has thyroid issues (and food allergies as well).  We've taken our kiddo to the best of the best and not gotten any answers. 

 

One think you may want to try (and I wish I knew this before I spent a bazillion dollars on a trip to Boston) is have the bas drawn and sent to the Mayo clinic.  I had DS's blood drawn 1 week apart and one set sent to Mayo.  One said he was absolutely normal and the other still high.  Very frustrating. 

[MomBTired]

We finally have come to the end of knowing what is wrong with him. It has been almost a 15 year battle, starting in Kindergarten and just finished diagnosing him 2 months from turning 20. There will be a book! I'm really tired HA! But not to tired to find others who might be going through this too and the pediatric specialists are clueless. He's been a teaching experience for many doctors sadly.

[nvsmom]

Poor kid.

 

Has he had the DGP IgA, DGP IgG< or EMA IgA tests done recently?  They might be worth checking to see if gluten is the problem.

 

The EMA IgA is usually positive only if the tTG iGA is quite active - only positive when the disease is in it's advanced stages.  If he is gluten-free, the EMA IgA will come down before the tTG IGA does.

 

The DGP also reacts more quickly than the tTG tests.  In fact, the DGP tests are often used to test for dietary compliance.  If the DGP tests are positive, it means gluten is getting into his diet somewhere.

[MomBTired]

Oh he definitely has celiac, the blood test and biopsy were positive along with the skin biopsy for the dermatitis herpetaformis. Then he was diagnosed with small fiber neuropathy with a positive nerve biopsy which should have been picked up many years ago when he had a colonic manometry come back positive for major nerve damage. He ended up having his large intestine removed back in middle school and before that had a fundo done because his stomach valve wouldn't work correctly. So his gastro system is shot and if he saw an adult neurologist back when he was 10, life could have been a bit easier in the past 10 years.

 

He is transitioning to adult doctors now. His new neurologist told me that anyone that comes into his office with extreme pain and/or labeled with fibro and celiac, he diagnoses them with small fiber neuropathy. He doesn't do the biopsy. the only reason my son had it done was because his pediatric neurologist didn't believe he had it and was just trying to make me happy. He was trying to say my son's pain was fibro and psychological, what a mess!

 

My kiddo takes over 20 pills a day

[sunny2012]

Check those pills.

[MomBTired]

I checked them all once myself, called all the pharmaceutical companies. The pharmacy is doing it this time for me. They were all gluten free except some were in a facility that also used gluten

[nvsmom]

Oh he definitely has celiac, the blood test and biopsy were positive along with the skin biopsy for the dermatitis herpetaformis. Then he was diagnosed with small fiber neuropathy with a positive nerve biopsy which should have been picked up many years ago when he had a colonic manometry come back positive for major nerve damage. He ended up having his large intestine removed back in middle school and before that had a fundo done because his stomach valve wouldn't work correctly. So his gastro system is shot and if he saw an adult neurologist back when he was 10, life could have been a bit easier in the past 10 years.

 

He is transitioning to adult doctors now. His new neurologist told me that anyone that comes into his office with extreme pain and/or labeled with fibro and celiac, he diagnoses them with small fiber neuropathy. He doesn't do the biopsy. the only reason my son had it done was because his pediatric neurologist didn't believe he had it and was just trying to make me happy. He was trying to say my son's pain was fibro and psychological, what a mess!

 

My kiddo takes over 20 pills a day

 

Again, poor kid.

 

With the DGP IgA, DGP IgG, and EMA IgA, I just meant to run those to check for gluten-free compliance.  If gluten is the problem, and sneaking into his diet somehow, these tests are more likely to be elevated, unlike the tTG IgA which can sometimes remain elevated for years after going gluten-free or (rarely) because of another health problem.  The DGP and EMA tests will not stay elevated once gluten-free.

[cristiana]

An old thread that might be helpful.

 

https://www.celiac.com/forums/topic/83588-gluten-free-and-still-high-ttg-iga-level/

[MomBTired]

I went and left a message asking his endocrinologist if his thyroiditis could be making the test high when it could be completely normal. The only symptom he gets is the DH and we haven't seen it in a while

[Gemini]

I went and left a message asking his endocrinologist if his thyroiditis could be making the test high when it could be completely normal. The only symptom he gets is the DH and we haven't seen it in a while

Yes, it can!  I have Celiac and Hashi's and my thyroid antibodies were off the charts for many years due to undiagnosed Celiac. It takes a long while to bring the thyroid antibodies down and some people have trouble with that to the point where they never return to normal..  This, in turn, can keep your tTg higher because your thyroid is still under attack. Raised tTg is not always from Celiac Disease alone.

 

If your son has not had an outbreak of DH and his DGP test is rerun and it comes back low negative, then he is most likely NOT ingesting gluten and the elevation is from something else.....which is his case, could be the thyroid issue.  When you have both issues, that is a lot of inflammation to heal.  It also takes quite awhile for DH to heal after starting the gluten-free diet so if he was cheating or unknowingly eating gluten in his diet, there would be flares that would not go away right off the bat.  But make sure they run the DGP for dietary compliance when they check his tTg!