Gluten "challenge"

[redheadheather]

So the doctor group my son sees is now recommending that he go back on gluten for 3 months in order to do a further "more specific" test for gluten antibodies (the TTG one) "not that what they ordered was wrong, but with Evan's results being inconclusive..." GAH - that is SO not what they said initially. They're only doing this b/c I questioned why they only did 2 tests (after reading here what the "normal" full panel includes and checking w/the specialists office)

They only ran the IGG and IGA tests and the IGA was negative and IGG was 57. I told my husband that we're just going to say screw it to them... since he has to go back on gluten (he has no symptoms of celiac disease - was tested b/c of family history) we'll take him to a pediatric gastroenterologist and get it done right this time.

The worst part was explaining to a 6-year old WHY he is going to eat the foods he initially was told he couldn't and that we MAY have to stop eating them again after his testing is re-done.

[VydorScope]

So the doctor group my son sees is now recommending that he go back on gluten for 3 months in order to do a further "more specific" test for gluten antibodies (the TTG one)  "not that what they ordered was wrong, but with Evan's results being inconclusive..."  GAH - that is SO not what they said initially.  They're only doing this b/c I questioned why they only did 2 tests (after reading here what the "normal" full panel includes and checking w/the specialists office)

They only ran the IGG and IGA tests and the IGA was negative and IGG was 57.  I told my husband that we're just going to say screw it to them... since he has to go back on gluten  (he has no symptoms of celiac disease - was tested b/c of family history) we'll take him to a pediatric gastroenterologist and get it done right this time.

The worst part was explaining to a 6-year old WHY he is going to eat the foods he initially was told he couldn't and that we MAY have to stop eating them again after his testing is re-done.

<{POST_SNAPBACK}>

Okay let me get this straight... you have a POSTIVE test result for celiac disease and they want you to put him back on gluten? Please tell me I have misunderstood, cause theres no way you should put him back on gluten! ANd this is comming from some one currently doing a gluten challenge!

What about the result fo the gluten-free diet? How did that impact him?

[redheadheather]

Only the IGG was positive and they pediatric gastroenterologist said that since they only did an IGA and an IGG test, that isnt' sufficient for a diagnosis, especially since one was negative.

The only change I can say we noticed in him (health wise and behavior wise) since we started in August is that he lost 5 pounds.

I REALLY hate the doctors we see right now - if they'd only referred us to the specialist in the first place like I asked there'd be no questions at this point.

So, in your opinion, only the positive IGG test is sufficient? They said that there could be other reasons for that to be higher than normal?? GAH - I just think they have NO CLUE what they're doing.

[junieb]

From what I understand (very, very little!!!!) the 2 tests you had done may have been 2 of the ones that they run but they are the 2 that are not specific to celiac disease - meaning if they are pos then something somewhere may be wrong but it's not definitely celiac disease - there are 2 others that are more specific. We had 3 of the 4 run - 1 of the specific ones and 1 of the not-as-specific ones were pos. Biopsy next friday. HTH

[VydorScope]

So in your opinion theres been no real change with the diet, did he have symptons before going gluten-free? What made you think celiac disease to begin with?

[redheadheather]

No - no real change other than the weight loss. He did have issues w/focusing on school work that cleared up - but it's hard to say if gluten was the culprit there... or mild attention issues that resolved when he got the hang of learning how to read(or he's a normal 6 year old boy )

He was mainly tested because of a strong family history on both sides (my mother and grandmother and DH's mother and grandmother). Just a suspicion about him. He does have recurrent canker sores, periodic stomach cramps (maybe 1x/wk or less)... but it's hard to say what causes those (he still gets them periodically.)

[VydorScope]

No - no real change other than the weight loss.  He did have issues w/focusing on school work that cleared up - but it's hard to say if gluten was the culprit there... or mild attention issues that resolved when he got the hang of learning how to read(or he's a normal 6 year old boy  )

He was mainly tested because of a strong family history on both sides (my mother and grandmother and DH's mother and grandmother).  Just a suspicion about him.  He does have recurrent canker sores, periodic stomach cramps (maybe 1x/wk or less)... but it's hard to say what causes those (he still gets them periodically.)

<{POST_SNAPBACK}>

Well now thats a bit different. First all little boys have some attention issues, I would not be concerned! Esply fully grown and married ones

Well if he has had no symptons of celiac disease, and no change brought on by the diet, then I would consider finding new docs and diong the tests again. You should think about it very carfully though cuase if he has celiac disease you will be putting him though heck. I would say if you do it, try it with only the plan of lasting a few days and see. Ifyou see a dramtic change right away STOP the gluten and forget the tests he has celiac disease.

Please keep us updated on what you dicide and how it goes. I wish I knew more about each blood test to help you with that speific question.

Aslo, get him tested for food allergies as soon as your able.

[ravenwoodglass]

No - no real change other than the weight loss.  He did have issues w/focusing on school work that cleared up - but it's hard to say if gluten was the culprit there... or mild attention issues that resolved when he got the hang of learning how to read(or he's a normal 6 year old boy  )

He was mainly tested because of a strong family history on both sides (my mother and grandmother and DH's mother and grandmother).  Just a suspicion about him.  He does have recurrent canker sores, periodic stomach cramps (maybe 1x/wk or less)... but it's hard to say what causes those (he still gets them periodically.)

<{POST_SNAPBACK}>

So he was having celiac disease symptoms, the ones you describe are much like my son's were for years. We were told he was just an anxious child and it was showing up in his tummy. My son was not diagnosed until 19, he is now 22, his growth was stunted, 5', and he now is not struggling in technical school like he did through grammer and high school. His focusing problems are now under control...unless glutened. Please be sure he does not have celiac disease. Many people have reported good results with testing through 'Enterolab' I have not used them myself but I understand you do NOT have to be consuming gluten for the tests to be accurate. I was diagnosed through dietary elimination after years of misery from false negatives.