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High Ttg After 2 1/2 Years On Strict gluten-free Diet


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#1 gratefulmom

 
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Posted 24 June 2014 - 12:32 PM

My daughter was diagnosed with Celiac 2 1/2 years ago.  At that time her IgA TTG level was 149.6, and deaminated gliadin levels were quite high as well (110 and 47).  Since then, her levels have been coming down gradually, but her TTG level is still in the "strong positive" range (it's now at 41.7).  We do not do any gluten cooking in our kitchen, I've cleaned out our cupboards, gotten new gluten-free colanders and cutting boards, and basically purged my kitchen of gluten products.  I'm hyper-vigilant with what my daughter eats and what foods are in our home, as well as all personal care products (sunscreen, lotion, shampoo/conditioner, soap, etc.), and her level will just not come down!  Our registered dietician, who is known in our state to be one of the leading experts on Celiac, has discussed this at length with me, and she cannot find where we are slipping up.  She says that this high of TTG would only be a result of regular, prolonged gluten exposure.  She says that either her exposure is coming from outside the home (can't figure that out, either), or that my daughter might possibly have a different auto-immune disease that is keeping her levels from coming down.  After doing some internet research, I found a page from the University of Chicago Celiac Disease Center that discusses possible causes of continued high TTG level on a gluten-free diet. They suggest that a high TTG on a gluten-free diet can indicate chronic liver disease, Type 1 diabetes, Chron's disease, and thyroiditis.  Here's the link: http://www.curecelia...n&submit=Search .  Our gastroenterologist says that there is conflicting research on this topic, and he feels that nothing else could be causing my daughter's TTG levels to remain high other than gluten exposure.  My dietician disagrees, and wants me to contact one of the leading experts (Dr. A. Fasano, Dr. Joseph Murray, or Dr. Peter Green) to check into this question.  Our gastroenterologist (who is considered a celiac expert, as well) told us we could get a biopsy to see if her gut is indeed healing in spite of the high level, but we all mutually decided to wait a year.  So.  Do we just ignore it all and wait another entire year, or is there something else we should be doing?  If my girl has some other auto-immune disease, I'd like to get it dealt with sooner rather than later.  One more piece of information that might be helpful is that her GOT/AST,S and GPT/APT,S (on her hepatic function panel) were somewhat high.  Not sure who to believe and what to do at this point!  Thanks in advance for any advice or suggestions!

 


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#2 Gemini

 
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Posted 24 June 2014 - 02:17 PM

The link you found from U of C Celiac center was absolutely correct...all those AI diseases can cause stubborn elevation of tTg levels.  I have Hashi's thyroid disease, on top of Celiac, and it took me longer than I wanted for my tTg to come down from high normal range to low normal range after going gluten free.  My thyroid was out of control when I was diagnosed with Celiac and my Celiac panel was very high, like your daughter's.  My tTg was around 200 and my thyroid antibodies were 1200, when normal is under 40. So, as you can see, many doctors are clueless on this subject and think their patients are still ingesting gluten, when they may not be. 

 

When it takes 2 1/2 years of a strict gluten-free diet and the tTg is not down to low normal, look at the other AI diseases and test for those.  I am concerned that her liver function tests are abnormal.  That can happen from undiagnosed Celiac alone but you have had her gluten-free for over 2 years and they are still elevated.  I would have her see a liver specialist, ASAP. I am not trying to scare you but you sound like you want to get to the bottom of this and I applaud you for digging deep on it and not just believing the doctor. Contacting the A list of Celiac doctors is a good start but attention needs to be paid to her liver function tests.

 

Good luck!


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#3 gratefulmom

 
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Posted 24 June 2014 - 02:59 PM

The link you found from U of C Celiac center was absolutely correct...all those AI diseases can cause stubborn elevation of tTg levels.  I have Hashi's thyroid disease, on top of Celiac, and it took me longer than I wanted for my tTg to come down from high normal range to low normal range after going gluten free.  My thyroid was out of control when I was diagnosed with Celiac and my Celiac panel was very high, like your daughter's.  My tTg was around 200 and my thyroid antibodies were 1200, when normal is under 40. So, as you can see, many doctors are clueless on this subject and think their patients are still ingesting gluten, when they may not be. 

 

When it takes 2 1/2 years of a strict gluten-free diet and the tTg is not down to low normal, look at the other AI diseases and test for those.  I am concerned that her liver function tests are abnormal.  That can happen from undiagnosed Celiac alone but you have had her gluten-free for over 2 years and they are still elevated.  I would have her see a liver specialist, ASAP. I am not trying to scare you but you sound like you want to get to the bottom of this and I applaud you for digging deep on it and not just believing the doctor. Contacting the A list of Celiac doctors is a good start but attention needs to be paid to her liver function tests.

 

Good luck!

Thanks so much for your reply!  I will look more carefully into her liver test levels.  I am wondering why our gastroenterologist is not more concerned.  I'm also curious what a typical TTG level is for a 9 year old who's been on a gluten-free diet for years.  How concerning is a TTG level of 47 in a child of this age?  Do you think this could be a false positive? 

 

Thanks again!


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#4 Gemini

 
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Posted 24 June 2014 - 03:31 PM

Thanks so much for your reply!  I will look more carefully into her liver test levels.  I am wondering why our gastroenterologist is not more concerned.  I'm also curious what a typical TTG level is for a 9 year old who's been on a gluten-free diet for years.  How concerning is a TTG level of 47 in a child of this age?  Do you think this could be a false positive? 

 

Thanks again!

It is a mystery to me why doctors make a big deal out of some things and not so much on others that should concern them.  Two and a half years gluten free is long enough for antibodies to hit the normal mark....low normal, where they should be if the diet is followed correctly.  Look at the normal range of the tTg test given on the blood work and that should give you an idea of what her tTg should be. Numbers can vary according to what lab does the testing...they have different ranges, which does not make things easier.

 

Your daughter's tTg came down well from a high of 149.6 to 47 but is still out of range after 2 1/2 years, which warrants investigation.  Was she symptomatic before being diagnosed and are those symptoms in remission?  That could give you a clue as to whether she is ingesting gluten somewhere or if she has something else going on, which could be as her liver function testing is abnormal also.   I am not a believer in false positives.  Maybe repeating the test might be in order if there is doubt but that doesn't explain her elevated liver function tests. Again, please do not get too worried over this as I am not trying to scare you into thinking your daughter has something serious but think you should not wait to look into it. She just might need more time to heal but kids usually heal faster than adults and it's been over 2 years.

 

There is another forum member, StephanieL, who is in Boston, Mass. right now getting a second opinion on her son from Dr. Fasano.  Her son's problem is very similar to your daughter's......elevated tTg after being on a gluten-free diet for awhile.  He also has thyroid disease and multiple food allergies. You might want to check the forum in the next week because she has promised to post with her experience. I can also PM her, as I have been because I live in Boston, to let her know.  Hang in there because I am sure this will be figured out!


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#5 gratefulmom

 
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Posted 24 June 2014 - 05:45 PM

It is a mystery to me why doctors make a big deal out of some things and not so much on others that should concern them.  Two and a half years gluten free is long enough for antibodies to hit the normal mark....low normal, where they should be if the diet is followed correctly.  Look at the normal range of the tTg test given on the blood work and that should give you an idea of what her tTg should be. Numbers can vary according to what lab does the testing...they have different ranges, which does not make things easier.

 

Your daughter's tTg came down well from a high of 149.6 to 47 but is still out of range after 2 1/2 years, which warrants investigation.  Was she symptomatic before being diagnosed and are those symptoms in remission?  That could give you a clue as to whether she is ingesting gluten somewhere or if she has something else going on, which could be as her liver function testing is abnormal also.   I am not a believer in false positives.  Maybe repeating the test might be in order if there is doubt but that doesn't explain her elevated liver function tests. Again, please do not get too worried over this as I am not trying to scare you into thinking your daughter has something serious but think you should not wait to look into it. She just might need more time to heal but kids usually heal faster than adults and it's been over 2 years.

 

There is another forum member, StephanieL, who is in Boston, Mass. right now getting a second opinion on her son from Dr. Fasano.  Her son's problem is very similar to your daughter's......elevated tTg after being on a gluten-free diet for awhile.  He also has thyroid disease and multiple food allergies. You might want to check the forum in the next week because she has promised to post with her experience. I can also PM her, as I have been because I live in Boston, to let her know.  Hang in there because I am sure this will be figured out!

I will definitely look up Stephanie's posts.  I am just trying to figure out if I'm being paranoid, or if this is still a big concern!  It will be extremely helpful to compare notes with someone who's going through a similar situation.  Many of my daughter's symptoms are gone, although her symptoms were (and are) more neurological than gastrointestinal.  Although she did have an issue with random vomiting, that was about it in regard to her gastrointestinal symptoms.  It did, however, seem like she had no immune system whatsoever.  Now, when she gets sick, she actually gets well again!  I do feel like I need to look into the neurological ramifications of Celiac, as this has been our bigger concern.  That's all a long story.  Maybe those questions will be asked on some other thread.  This Celiac thing just has so very many layers!  It's exhausting!  Gotta figure it out, though, cause I love my daughter!  Thanks again, and I'll look for StephanieL's posts!


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#6 kareng

 
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Posted 24 June 2014 - 05:55 PM

I am making the post that is going to piss you off, but it's what the doctors will think first. Is your daughter getting gluten when you aren't there? At school? A friends house? I don't really care about the answer, because you will say your daughter never cheats - on purpose or accidentally. I just want to put the idea in your head.

I have seen that kids eat things they think are gluten-free but aren't. Then if you ask, they can honestly say " no. I didn't eat gluten." For example, kids who don't realize that the Rice Krispie treats other kids bring to school aren't gluten free. The ones you make at home are, so she may not realize not every treat is not gluten-free. Or you make Chex mix and its gluten-free, these kids make it or buy it - it must be gluten-free. I have seen adults surprised that the corn flakes they have been eating contain gluten. They never thought of it!
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#7 gratefulmom

 
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Posted 24 June 2014 - 06:09 PM

I am making the post that is going to piss you off, but it's what the doctors will think first. Is your daughter getting gluten when you aren't there? At school? A friends house? I don't really care about the answer, because you will say your daughter never cheats - on purpose or accidentally. I just want to put the idea in your head.

I have seen that kids eat things they think are gluten-free but aren't. Then if you ask, they can honestly say " no. I didn't eat gluten." For example, kids who don't realize that the Rice Krispie treats other kids bring to school aren't gluten free. The ones you make at home are, so she may not realize not every treat is not gluten-free. Or you make Chex mix and its gluten-free, these kids make it or buy it - it must be gluten-free. I have seen adults surprised that the corn flakes they have been eating contain gluten. They never thought of it!

Karen, that is a good question to ask.  We are certain that she is not sneaking it.  My husband was actually her math/science teacher, so he was able to supervise the eating situation at school fairly well.  She doesn't eat out at restaurants, with the exception of one dedicated gluten-free restaurant that we go to when we make it to the city.  When she goes to friends' homes, I always pack a cooler with food and a cutting board, and the moms of her few pals all know the very long, overboring list of what she can and cannot eat.  I do wonder about surfaces at school, though.  As much as we tell her to wash her hands and that surfaces need to be cleaned, who really knows for sure how clean those tables and desks are getting!  That's really the only thing I can identify as a possible culprit.  I am also a teacher in her school, so of course all of the staff know about the situation (and I'm sure they're sick of hearing about it!). Our dietician says that a TTG level of 47 after being gluten-free for 2 1/2 years wouldn't be a small, periodic exposure.  She says it's ongoing and substantial.  I am racking my brain over spices and products that are labeled gluten-free but may not be... Ugg...  Thanks for the suggestion.  Wish it was something simple and obvious like that!!!  We'll keep plugging along trying to figure it out.  Thanks again!


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#8 gratefulmom

 
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Posted 24 June 2014 - 06:11 PM

I will definitely look up Stephanie's posts.  I am just trying to figure out if I'm being paranoid, or if this is still a big concern!  It will be extremely helpful to compare notes with someone who's going through a similar situation.  Many of my daughter's symptoms are gone, although her symptoms were (and are) more neurological than gastrointestinal.  Although she did have an issue with random vomiting, that was about it in regard to her gastrointestinal symptoms.  It did, however, seem like she had no immune system whatsoever.  Now, when she gets sick, she actually gets well again!  I do feel like I need to look into the neurological ramifications of Celiac, as this has been our bigger concern.  That's all a long story.  Maybe those questions will be asked on some other thread.  This Celiac thing just has so very many layers!  It's exhausting!  Gotta figure it out, though, cause I love my daughter!  Thanks again, and I'll look for StephanieL's posts!

I am new to this forum, and can't figure out how to find StephanieL's posts.  When I put her name in the search bar, I can find threads where she's made comments.  Do you know the title of her thread on which she's discussing her situation with the high TTG levels?  Thanks!


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#9 Gemini

 
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Posted 24 June 2014 - 07:00 PM

One very important question I forgot to ask......did they re-run her DGP to see if she is actually positive on that because that's the test you run for dietary compliance, not the tTg. If that is low negative, then she is not consuming gluten.

It's late and I need some sleep but I can let Stephanie know and she can post. I'll see if I can find the topic tomorrow also.
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#10 gratefulmom

 
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Posted 24 June 2014 - 07:57 PM

One very important question I forgot to ask......did they re-run her DGP to see if she is actually positive on that because that's the test you run for dietary compliance, not the tTg. If that is low negative, then she is not consuming gluten.

It's late and I need some sleep but I can let Stephanie know and she can post. I'll see if I can find the topic tomorrow also.

Does DGP mean Deaminated Gliadin?  Her IgA Gliadin has gone from 110.6 down to 15 so that's now negative (yay!), and her IgG Gliadin has gone from a 46.8 down to 17.9, which is negative, too (yahoo!).  For both the IgA and IgG, less than 20 is considered negative, 20-30 is a weak positive, and 30+ is a strong positive.  What you're saying coincides with what my dietician told me.  She said the gliadins would be up with random exposures, but not the TTG.  So...maybe it's true that we're pretty dialed in with the gluten-free diet and it could be something else.  Hmmmm.....  Thanks!


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#11 frieze

 
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Posted 25 June 2014 - 06:33 AM

yup, need the further testing for other AI diseases!


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#12 dilettantesteph

 
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Posted 25 June 2014 - 06:52 AM

Have a look at this study:

Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients

http://www.biomedcen...1471-230X/13/40

 

I don't know if that is the most likely problem, but it is probably the easiest to investigate. 

I hope you can find the problem.


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#13 Gemini

 
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Posted 25 June 2014 - 07:06 AM

Does DGP mean Deaminated Gliadin?  Her IgA Gliadin has gone from 110.6 down to 15 so that's now negative (yay!), and her IgG Gliadin has gone from a 46.8 down to 17.9, which is negative, too (yahoo!).  For both the IgA and IgG, less than 20 is considered negative, 20-30 is a weak positive, and 30+ is a strong positive.  What you're saying coincides with what my dietician told me.  She said the gliadins would be up with random exposures, but not the TTG.  So...maybe it's true that we're pretty dialed in with the gluten-free diet and it could be something else.  Hmmmm.....  Thanks!

I just wrote out a long post to you and lost it........ARGH!!!!!!!

 

First things first......http://www.celiac.co...rs-gluten-free/  Here is the thread on Stephanie's son and his tTg issues.

We should be hearing from her by this week-end or next week regarding her visit to Dr. Fasano.

 

Your daughter's numbers on the DGP (Deamidated Gliadin.....correct!) were pretty good considering her diagnosis numbers but here's the deal with those.....they should be as close to zero as possible, once you arrive there.  Now, no one tests zero on a DGP because that would be pretty near impossible and it is not entirely necessary for a return to health.  But it is the blood test to see if any gluten is getting past the sentry into your system.  For optimal numbers to shoot for, they should be 5 or under consistently once you have healed.  I don't think a 15 or 17 would be enough to raise tTg to a 47, though.  I also think you are doing a good job with the diet, judging from the change from diagnosis.

 

As her liver function tests were elevated still, I would be remiss not to encourage you to have more blood work done to check for other AI diseases that might be brewing. I am not saying there is but a wait and see approach is dumb because it's been 2 1/2 years already and she has other elevated testing.  Keep up the good work on the diet without becoming paranoid about it.  Have more tests run on the associated diseases that happen with Celiac and see what they say. 

 

It took me about 7 years to get my thyroid antibodies into the normal range from where they were after starting the gluten-free diet. But I am a lot older than your daughter. I also take thyroid hormone and will for the rest of my life.  No biggie.  Don't worry...you'll get this figured out!


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#14 gratefulmom

 
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Posted 25 June 2014 - 02:02 PM

yup, need the further testing for other AI diseases!

Okay then.  Thanks so much for pointing me in that direction.  Not thrilled about the thought of it, but we need to get to the bottom of it.  Thanks for the reply!


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#15 gratefulmom

 
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Posted 25 June 2014 - 02:24 PM

Have a look at this study:

Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients

http://www.biomedcen...1471-230X/13/40

 

I don't know if that is the most likely problem, but it is probably the easiest to investigate. 

I hope you can find the problem.

I just read through this study, and I plan to read it again and try to really get my brain around what it's saying.  I just looked up "refractory celiac disease."  How long would a person be on a strict gluten-free diet with the body not responding before the person is classified as having this refractory version of celiac?  Sounds like my daughter fits into this category.  The course of action suggested in this study seems like what we should do at this point.  My daughter doesn't eat out, and I feel that I am super careful, but now I feel that I need to just ditch all processed products that are labeled gluten-free, as this is likely the culprit.  The study says the participants eliminated all foods that might even possibly be cross contaminated, and the only grain they ate was rice.  Now I am wondering about foods such as quinoa, block cheese, and certified gluten-free products such as Udi's pizza crusts.  Pleeeease tell me that we can keep eating those products!  Do you have a recommendation of where I can find a list of foods that are potentially cross-contaminated?  Thanks so much for sharing this research study!


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