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      Frequently Asked Questions About Celiac Disease   09/30/2015

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High Ttg After 2 1/2 Years On Strict gluten-free Diet
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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.cureceliacdisease.org/?s=high+TTG+with+no+gluten&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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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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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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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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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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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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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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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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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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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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yup, need the further testing for other AI diseases!

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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.biomedcentral.com/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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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.com/gluten-free/topic/105222-slightly-elevated-ttg-after-years-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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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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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.biomedcentral.com/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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I just wrote out a long post to you and lost it........ARGH!!!!!!!

 

First things first......http://www.celiac.com/gluten-free/topic/105222-slightly-elevated-ttg-after-years-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!

Thanks so much.  I will definitely go to Stephanie's link.  Looks like I need to dig a little deeper with checking out the AI possibilities.  I feel guilty getting a second opinion, but we may go that route soon.  I appreciate all of your feedback.  It's super helpful!!!

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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!

 

I had found out that I have to eat like this by trial and error before the study came out.  I'm glad that it did so that I don't seem quite so crazy. LOL

 

It's easier than it looks.  You get used to it.  They say only rice, so that does not include quinoa.  It says "Unflavored, unseasoned dairy products are introduced on week 4." which would include the block cheese.  It says that aged cheese is allowed and processed cheese is not.  Udi's pizza crusts are not included.  The diet is "diet of whole, unprocessed foods".  Instead of looking for a list of foods that are potentially cross-contaminated, look at Table 1 in the link which has the allowed and not allowed foods.  You need to click on Table 1 in the text and the table comes up.

 

One benefit to this diet is that it won't interfere with further testing for AI diseases.  It might just do the trick.

 

Of note is this part: "Of the 14 patients who responded to the diet, 11 (79%) successfully returned to their previous traditional GFD without resurgence of symptoms or elevated serology."

 

It may only need to be temporary.  Those people were on the special diet for 3-6 months

 

I hope that your daughter feels better soon.

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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!

Gratefulmom...........Yes, you can still keep eating these products because the odds that your daughter has refractory is pretty damn low.  You need to look into other AI testing first because her DGP is within normal limits, although it still needs a bit of tweeking which will come in time as she continues healing. I would only go ahead with a more restricted diet on the advice of someone like Fasano because the condition of "super sensitive" is not recognized by the leading experts in the field. You could be restricting your daughter unneccesarily. All Celiacs become more sensitive the longer they are gluten free and it is not because we are eating contaminated foods. Buy certified gluten-free only, if you feel better about doing that.  I do.

 

I have multiple AI diseases and it took a long time for my tTg to be in the low normal range also.  I was strict with my diet but I ate certified gluten-free foods and that wasn't the issue. It was the presence of other problems and the time it took for them to calm down.  One step at a time.......

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Gemini says:  "I would only go ahead with a more restricted diet on the advice of someone like Fasano because the condition of "super sensitive" is not recognized by the leading experts in the field."  This is an opinion.  My opinion is that Fasano would not have published this paper if he did not recognize the need for this diet for some individuals. 

 

Fasano, given by Gemini as one of leading experts in the field, is one of the authors in the 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

 

in which the special diet is outlined.  The study was published so that patients and their doctors could see it and benefit from it.  The OP said that her child's doctor thinks that gluten in the diet is the problem.  The study address that.

 

It would be best for the OP to discuss this with her child's doctor.

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Ummmmmmm.......that's what I said Stephie. Before anyone further restricts a child's diet any more, they need to go to someone who is well versed on Celiac Disease. Her diet may not be the problem as her DGP is within normal limits and has come down from very high numbers.

She has red flags for further AI problems so those need to be investigated before any more dietary changes are instituted. Very few people need to go to the next level, especially kids. But that needs to be decided by people who have far more education than you do on this.

Your agenda which insists that there is gluten in everything is not reality based. Let's not confuse people by sending them off into the weeds.

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Okay.... I hope this response goes out to everyone who's replied to my post!  I'm still trying to dial in how this conversation thread works!  I reread the article, and I've also read your responses.  I can't tell you how much I appreciate you sharing what you've learned, as it's clear that you are passionate about your researching and sharing of the subject. 

 

Here's my "plan" for the moment... 

1. We are going to ramp up our level of concern with our gluten-free products to further eliminate the possibility by cross contamination and do some (not all, yet) of the diet listed in Table I of the study.  Even though we feel we are super careful with our gluten-free foods, I think we'll no longer rely on the gluten-free labeling per se, and instead stick with only gluten-free foods made in a dedicated gluten-free facility (such as Schar's and Glutino).  I need to look more closely at foods that we think are gluten-free, and double-check their status (such as Minute Maid OJ, Welch's grape juice, spices, etc.).  We may still be missing something.

2. I will start researching related autoimmune diseases.  My daughter doesn't have symptoms of some of these AI diseases (no symptoms of Hashi's, for instance, although my little brother had thyroid cancer at age 19...not sure if that's something to consider), but I need to do further study on colitis and some of the others.

3. When school starts, we're gonna have to make a bigger fuss about surface cleanliness.  This might be a major source of cross contamination.  For instance, they do wipe down the tables at lunch, but are the rags full of gluten crumbs?  If so, maybe they're just smearing the crumbs around. I've tried to get my daughter to make sure her food isn't touching the table, but how can I be sure when I'm not there?  I need to have a teacher make sure she's washing her hands before her lunch and snacks, and I need to make sure she puts her food on a clean tray.  She doesn't want to be singled out and feel different, but if she doesn't do this, I may not let her eat in the cafeteria anymore with the other kids.  That would be a big bummer!

4. We need to keep a food journal, which will include every food AND any possible reactions.  Her reactions are not "obvious" (not gastrointestinal), and we're trying to determine if some of her behaviors (what seem to be blood sugar spikes) are gluten exposures or just too many carbs and sugars without proteins to stabilize her blood sugar levels.  BTW, the dietician feels strongly that she doesn't have diabetes.  Most of her symptoms are neurological (sensory, etc... that's another long story...), so we'll monitor those closely.

5. Look more deeply into the casein question.  Our dietician didn't want her to stop consuming dairy, but I've read recently that the protein in milk can mimic gluten protein.  Not sure if this is substantiated, but need to look into it.

 

If, at our next appointment (which is not until next June!) we don't see a marked improvement, I think our doctor wants to do another biopsy.  I think that, at that point, if she still has damage and we've corrected all possible sources of cross contamination, that's perhaps when we shoud pursue more testing/second opinon/etc.

 

Any suggestions?  Don't want to be remiss in waiting too long, but don't want to be paranoid and start demanding tests and flying around the country for other opinions.  My daughter has improved greatly, but we need to get this completely figure out.

 

Thanks again SO MUCH for your time and thoughts!!!

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Your efforts are to be commended as I know you are trying really hard to figure this all out but I would STRONGLY urge you to see a celiac specialist now and have her tested for other AI diseases. You do not want to mess around missing something like that.......take it from me, I have 4 AI diseases and 3 of them resulted in me having gone so long without a Celiac diagnosis. Many times, stubborn numbers are the result of other food intolerances or another AI disease.

The dairy issue.......is your daughter having reactions to dairy that you notice? Because dairy is very problematic for many and it could be lactose or casein related. I know doctors freak when kids eliminate dairy but there are many other sources for calcium and that one I would pay attention to. Your daughter had very high numbers at diagnosis so could very well have a dairy problem. The enzyme that digests lactose is produced in the tips of the villi and when they become flattened/damaged, you cannot digest milk. That will clear up for some after healing but not all people get dairy back. I should also mention that neuro problems related to Celiac take much, much longer to heal than gastro problems. I would suggest having her vitamin levels checked because a deficiency in B vitamins could also cause neuro problems......you cannot heal without good B levels.

I would not become too overly obsessed with her eating arrangements at the cafeteria table. I would think that most people do not put their food directly on the table but have it on a tray or a paper lunch bag......something that would keep it from contact with the table. People over think this all the time. Go over protocol with her and explain why she has to do this. Kids are smart and she will understand.

Remember.......you tell us that she has improved greatly so you are on the right path. But look into testing for other AI problems now......honestly, her doctors should have been more on top of this. It is more common for people to have multiple AI issues with Celiac than not so just keep that in mind. The dedicated facility approach is good to do also and she may be able to relax that a bit down the road when more healing has taken place. Your daughter is going to be fine, don't worry. It just takes longer than many people think it should.

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Your efforts are to be commended as I know you are trying really hard to figure this all out but I would STRONGLY urge you to see a celiac specialist now and have her tested for other AI diseases. You do not want to mess around missing something like that.......take it from me, I have 4 AI diseases and 3 of them resulted in me having gone so long without a Celiac diagnosis. Many times, stubborn numbers are the result of other food intolerances or another AI disease.

The dairy issue.......is your daughter having reactions to dairy that you notice? Because dairy is very problematic for many and it could be lactose or casein related. I know doctors freak when kids eliminate dairy but there are many other sources for calcium and that one I would pay attention to. Your daughter had very high numbers at diagnosis so could very well have a dairy problem. The enzyme that digests lactose is produced in the tips of the villi and when they become flattened/damaged, you cannot digest milk. That will clear up for some after healing but not all people get dairy back. I should also mention that neuro problems related to Celiac take much, much longer to heal than gastro problems. I would suggest having her vitamin levels checked because a deficiency in B vitamins could also cause neuro problems......you cannot heal without good B levels.

I would not become too overly obsessed with her eating arrangements at the cafeteria table. I would think that most people do not put their food directly on the table but have it on a tray or a paper lunch bag......something that would keep it from contact with the table. People over think this all the time. Go over protocol with her and explain why she has to do this. Kids are smart and she will understand.

Remember.......you tell us that she has improved greatly so you are on the right path. But look into testing for other AI problems now......honestly, her doctors should have been more on top of this. It is more common for people to have multiple AI issues with Celiac than not so just keep that in mind. The dedicated facility approach is good to do also and she may be able to relax that a bit down the road when more healing has taken place. Your daughter is going to be fine, don't worry. It just takes longer than many people think it should.

She does have a celiac specialist at the Children's Hospital, and I think he's considered to be a celiac expert.  He did test my daughter for the B levels (at my request), and those levels were thankfully fine!  Her vitamin D was very low last year, but that's gone up (she's now in the low normal range).  Her thyroid stim. hormone level was in the normal range. We will definitely spend some time looking into the AI possibilites.  Thanks for pointing me in that direction!

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Hi Grateful! 

 

I saw your title and it was the first post I started reading on here when I got home then I see my name everywhere ;) lol  I know everyone talks about sneaking and I tell them with my kid, I can 99.9% say NOPE! If he was eating something with gluten in it long enough to keep his levels up, it would have to be from our strict gluten free stash which isn't likely (trusted brands) and he's allergic (anaphylactic) to so much other stuff we WOULD know!!

 

You are getting amazing advice from everyone here.  My DS is 7 and we started the gluten-free diet 4 years ago. Our story is very similar to yours, very high ttg's, falling slowly but never returning to normal.  With help from people here (Miss Gemini , I'm looking at you ;) )we went the thyroid route. His numbers fell again but never to normal-hence our return today from Boston!!!

 

So you say she was dx- (please forgive my Mom just home from a crazy first time ever trip with kiddo with major food issues!) was there a biopsy with positive results?  That was not the case with us, though Dr. Fasano is waiting for our patho slides to be sent to him as I type.  With a sky high ttg but negative biopsy they gave us the option to rescope evey 6 months or go gluten-free. gluten-free it was. So over time things never normalized and we (Gemini and I lol) pushed for thyroid testing.  Bingo (not Hashi's but they assumed it was headed that way).  So onto synthroid he went. That was over a year and a half ago. His tts's fell again after this addition of medication but still not normal.  

 

So off to Dr. Fasano we went. 

 

So.....not sure I have much to add that hasn't been said here but wanted to introduce myself as it seems we have a lot in common!  Please let me know if you have any questions I may be able to help you with or a shoulder to cry on!  

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Hi Grateful! 

 

I saw your title and it was the first post I started reading on here when I got home then I see my name everywhere ;) lol  I know everyone talks about sneaking and I tell them with my kid, I can 99.9% say NOPE! If he was eating something with gluten in it long enough to keep his levels up, it would have to be from our strict gluten free stash which isn't likely (trusted brands) and he's allergic (anaphylactic) to so much other stuff we WOULD know!!

 

You are getting amazing advice from everyone here.  My DS is 7 and we started the gluten-free diet 4 years ago. Our story is very similar to yours, very high ttg's, falling slowly but never returning to normal.  With help from people here (Miss Gemini , I'm looking at you ;) )we went the thyroid route. His numbers fell again but never to normal-hence our return today from Boston!!!

 

So you say she was dx- (please forgive my Mom just home from a crazy first time ever trip with kiddo with major food issues!) was there a biopsy with positive results?  That was not the case with us, though Dr. Fasano is waiting for our patho slides to be sent to him as I type.  With a sky high ttg but negative biopsy they gave us the option to rescope evey 6 months or go gluten-free. gluten-free it was. So over time things never normalized and we (Gemini and I lol) pushed for thyroid testing.  Bingo (not Hashi's but they assumed it was headed that way).  So onto synthroid he went. That was over a year and a half ago. His tts's fell again after this addition of medication but still not normal.  

 

So off to Dr. Fasano we went. 

 

So.....not sure I have much to add that hasn't been said here but wanted to introduce myself as it seems we have a lot in common!  Please let me know if you have any questions I may be able to help you with or a shoulder to cry on!  

Hi Stephanie! Yes, when I read the your post (Gemini sent a link to a previous conversation), I felt an instant connection, as we are in a similar situation.  How did things go at your visit with Fasano?  Do you have any new info., or are you waiting?  How frustrating!  Yes, my daughter did have a positive biopsy 2 1/2 years ago.  She was at a Marsh 3B, which I understand to be fairly severe.  The celiac specialist said we should wait until next summer to do another biopsy.  It seems that, since our doc is considered to be a celiac expert, maybe we should really just follow his recommendation and wait a year before going crazy pursuing other avenues.  I do plan to really revisit all of our food and products to see if I'm missing something.  Are there many other folks on this forum that have similar issues, or is this situation a bit unusual? I didn't find a lot other than you and the others that responded to this post who have this concern.  Please keep me posted on your results with Fasano.  I'm super curious and interested!  Nice "meeting" you, and I appreciate your feedback, as well as the other amazing comments I have received!  I definitely have some things to think about and pursue! 

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