Negative Ttg...symptoms...and Gluten-Light.....how Conclusive Is This?

[SCookie]

I posted in this forum about 3 years ago about my then 2 yr old son who was very underweight. He was never evaluated for celiac for a variety of reasons. His growth recovered enough to be above the 10th percentile, thus alleviating medical concerns (although a 10th percentile height and weight is way out of sync with other family members and siblings).

We moved and did not worry about it again. Now he is 5 and was flagged because of no weight gain in a year. In fact he has actually lost weight and although now up to the 15th percentile for height he is in the 4th for weight and has a BMI for age in the 1st percentile. (Down from a BMI of 50th percentile a year ago). He also has recurrent diarrhea (urgently needs the bathroom up to 5 times a day) about 3 days a week, and complains of mild but recurrent intermittent stomach pain which does seem to impact his appetite. We have evaluated calorie intake and found it adequate and additionally I am pumping him with pediasure. Developmentally he is fine.

He finally got referred for eval on this and they ran a tTG IgA which came back normal (result says <3) and a total IGA which was also normal. This is from Quest Diagnostics. His other labs are all normal and nothing came up in allergy testing either. The GI doc was condescending and unhelpful. He is sure my son's diet is just not high fat enough, although we never talked at all about what my son actually eats.

My husband's grandmother had celiac we think. At least she thought so. She may have been self diagnosed.

My questions: I know the tTG is fairly sensitive. I have read all the posts about false negatives and it looks like that is about 10% ish...given that how conclusively should I view this result? Is this a complete panel? (What's listed as 'celiac panel' only includes tTG and total IgA.) Also, we are not gluten free by any means but we probably do eat gluten-light, and this child in particular is gluten-light since he does not like bread or crackers or cereal. We do a lot of rice and meat veggie combos, though he does sometimes eat pasta (I add butter and fat to all his stuff and he drinks whole milk and pediasure, the GI doc is whacked). Is his light-gluten status relevant regarding testing? What is the conventional wisdom on this?

I know someone will say, just do a gluten free trial and see what happens, but I have other children and am reluctant to do a trial without some hard evidence in advance. I did already try removing dairy with no effect. I am not convinced he has celiac but neither am I convinced he doesn't. Thoughts on all this appreciated.

thank you in advance

[Jenniferxgfx]

As a brand new celiac adult whose parents only did what they had hard evidence for despite a lifetime of sickness, I beg you to listen to your sons body and just try a gluten-free diet. A lifetime of sickness and disability that could have been prevented with a healthy diet change is well worth the parents' inconvenience, I think.

[Salax]

As a brand new celiac adult whose parents only did what they had hard evidence for despite a lifetime of sickness, I beg you to listen to your sons body and just try a gluten-free diet. A lifetime of sickness and disability that could have been prevented with a healthy diet change is well worth the parents' inconvenience, I think.

I agree with this, but also remove dairy as you remove gluten. That would be my first step. Then if he appears do be doing good, try adding dairy back in at a later date.

I know it's easier with "firm" diagnosis, but life isn't full of absolutes....so do what you can now as a mother.

[suziq0805]

I agree with this, but also remove dairy as you remove gluten. That would be my first step. Then if he appears do be doing good, try adding dairy back in at a later date.

I know it's easier with "firm" diagnosis, but life isn't full of absolutes....so do what you can now as a mother.

I'm not very good with the blood test info, but I wonder if they did all the needed tests. Genetic testing could tell you if he is at risk for celiac, and he wouldn't have to be on gluten for that. A couple things to think about though...if he would have celiac would you need any special accommodations for him at school? (like lunches or anything) A diagnosis may be helpful in that. I need to decide what to do with my son also and am considering the testing because I wonder if it will be helpful for school, college (he would need special meals if they force him to take the meal plan). Do you think your son will fight a gluten-free diet as he gets older if he doesn't have a diagnosis? Maybe you've already thought about these things but just thought I'd mention them. Good luck with deciding what to do!

[SCookie]

Well clearly they didn't do all the available tests. I just don't know whether its worth pushing for others or how much stock I should place in the tTG result and where I should go next. I am not convinced that there's nothing going on...I mean, should I really have to be making all this effort to feed him high fat food if nothing else is going on? (And the effort to put weight on him is not working. Not to mention I certainly never thought this much about what my other kids ate and they are healthy and tall and not underweight. I honestly don't understand how the growth chart doesn't speak for itself...)

but anyway, I do think would be very hard to get any kind of compliance from schools without something official.

Ugh. Thanks for your replies.

[ravenwoodglass]

Well clearly they didn't do all the available tests. I just don't know whether its worth pushing for others or how much stock I should place in the tTG result and where I should go next. I am not convinced that there's nothing going on...I mean, should I really have to be making all this effort to feed him high fat food if nothing else is going on? (And the effort to put weight on him is not working. Not to mention I certainly never thought this much about what my other kids ate and they are healthy and tall and not underweight. I honestly don't understand how the growth chart doesn't speak for itself...)

but anyway, I do think would be very hard to get any kind of compliance from schools without something official.

Ugh. Thanks for your replies.

False negatives are unfortunately really pretty common. If he is gluten light that almost insures a false negative. Genetic tests can be more confusing than helpful if they only check for the 2 most common celiac associated genes. Plus people can have those genes and never get celiac and folks can be celiac and not have those genes.

What you can do is put him on the diet strictly for a bit and see if that takes care of your son's problems. Dietary response is a valid part of the diagnosis process. If on the diet he gets relief from the D and his growth improves some wise doctors will give you at least a diagnosis of gluten intolerance and give you the needed 'script' for school.

[QuinnT]

I posted in this forum about 3 years ago about my then 2 yr old son who was very underweight. He was never evaluated for celiac for a variety of reasons. His growth recovered enough to be above the 10th percentile, thus alleviating medical concerns (although a 10th percentile height and weight is way out of sync with other family members and siblings).

We moved and did not worry about it again. Now he is 5 and was flagged because of no weight gain in a year. In fact he has actually lost weight and although now up to the 15th percentile for height he is in the 4th for weight and has a BMI for age in the 1st percentile. (Down from a BMI of 50th percentile a year ago). He also has recurrent diarrhea (urgently needs the bathroom up to 5 times a day) about 3 days a week, and complains of mild but recurrent intermittent stomach pain which does seem to impact his appetite. We have evaluated calorie intake and found it adequate and additionally I am pumping him with pediasure. Developmentally he is fine.

He finally got referred for eval on this and they ran a tTG IgA which came back normal (result says <3) and a total IGA which was also normal. This is from Quest Diagnostics. His other labs are all normal and nothing came up in allergy testing either. The GI doc was condescending and unhelpful. He is sure my son's diet is just not high fat enough, although we never talked at all about what my son actually eats.

My husband's grandmother had celiac we think. At least she thought so. She may have been self diagnosed.

My questions: I know the tTG is fairly sensitive. I have read all the posts about false negatives and it looks like that is about 10% ish...given that how conclusively should I view this result? Is this a complete panel? (What's listed as 'celiac panel' only includes tTG and total IgA.) Also, we are not gluten free by any means but we probably do eat gluten-light, and this child in particular is gluten-light since he does not like bread or crackers or cereal. We do a lot of rice and meat veggie combos, though he does sometimes eat pasta (I add butter and fat to all his stuff and he drinks whole milk and pediasure, the GI doc is whacked). Is his light-gluten status relevant regarding testing? What is the conventional wisdom on this?

I know someone will say, just do a gluten free trial and see what happens, but I have other children and am reluctant to do a trial without some hard evidence in advance. I did already try removing dairy with no effect. I am not convinced he has celiac but neither am I convinced he doesn't. Thoughts on all this appreciated.

thank you in advance

Because of the severity and chronic nature of the symptoms, celiac would both be a plausible explanation and a relatively straight-forward method of testing.

As previously mentioned, strict diet control is really the only sure-fire way of ruling in/out a gluten sensitivity or intolerance, especially if you are not on a gluten heavy diet before testing.

It would probably save you time and effort down the road (on top of worry) to do a ~2 week, carefully monitored gluten-free diet plan, rather than have this issue hanging over your head. Especially with a young child, you would likely see improvement within a few days, but you could definitely expect a lot of the more acute symptoms to improve within 2 weeks.

You could then definitely rule this condition out, and look elsewhere, or you could use the improvement you observed over those weeks to guide your next steps in either treating or diagnosing him.

-

If you are too unsure of the test results, and you are unable to strictly control his glucose intake for a week or two, your other option would be to go the other way and stick him on a glucose-heavy diet for 3-4 weeks. Very often a person will have to go on a glucose heavy diet to get a a diagnosis of celiac. At the end of this period you would have the options of either getting another round of blood tests (if you check the FAQs on this site they have some suggestions to make in how/where to get blood tests and which tests you should get), or you could get an upper GI, which is considered the "gold standard" for celiac diagnosis. An upper GI biopsy is -the- best test for celiac, and would additionally allow the doctor to check for a host of other conditions which could be causing these issues.

-

Finally, I don't know if these were included in the lab tests you have already done, but you may wish to consider testing specifically for intestinal parasites, both stool and blood tests. Children pick these up pretty easily, and the symptoms could present similarly with a failure to grow and intestinal discomfort. Intestinal parasitic infections won't necessarily show up on a standard blood test

[kareng]

Because of the severity and chronic nature of the symptoms, celiac would both be a plausible explanation and a relatively straight-forward method of testing.

As previously mentioned, strict diet control is really the only sure-fire way of ruling in/out a gluten sensitivity or intolerance, especially if you are not on a gluten heavy diet

If you are too unsure of the test results, and you are unable to strictly control his glucose intake for a week or two, your other option would be to go the other way and stick him on a glucose-heavy diet for 3-4 weeks. Very often a person will have to go on a glu cose heavy diet to get a a diagnosis of celiac. At the end of this period you would have the options of either getting another rou snd tests (if you check the FAQs on this site they have some suggestions to make in how/where to get blood tests and which tests you should get), or you could get an upper GI, which is considered the "gold standard" for celiac diagnosis. An upper GI biopsy is...

I think this is a typo but, just to keep the info correct : glucose is sugar. It has nothing to do with gluten.