Son's Blood Tests Tomorrow. What To Do?

[pricklypear1971]

Ok, finally taking my son in tomorrow for blood tests. Have gone over the lab sheet and all of them are there, plus thyroid and vitamin.

So here's the thing.... What if its negative?

I'm suspicious of milk because he had milk protein intolerance when he was a baby (kept him off til he was 1). He has also has the buddha belly (skinny everywhere else but has a belly and will store fat on his belly). He's tall and big for his age (everyone thinks he's 2 years older than he is).

He has some behavior issues I'm suspicious of (since this is how many kids express gluten or food intolerances). If I take him off gluten then he's going to have to go back on for testing again in another year. That's a bit wild - gluten-free for 9 months and on it for 3....

Of course, if he's positive we'll do the endoscopy so its all nice and legal (but go gluten-free even if biopsy is negative).

Opinions, please?

[saintmaybe]

Ok, finally taking my son in tomorrow for blood tests. Have gone over the lab sheet and all of them are there, plus thyroid and vitamin.

So here's the thing.... What if its negative?

I'm suspicious of milk because he had milk protein intolerance when he was a baby (kept him off til he was 1). He has also has the buddha belly (skinny everywhere else but has a belly and will store fat on his belly). He's tall and big for his age (everyone thinks he's 2 years older than he is).

He has some behavior issues I'm suspicious of (since this is how many kids express gluten or food intolerances). If I take him off gluten then he's going to have to go back on for testing again in another year. That's a bit wild - gluten-free for 9 months and on it for 3....

Of course, if he's positive we'll do the endoscopy so its all nice and legal (but go gluten-free even if biopsy is negative).

Opinions, please?

It sounds like you've made up your mind already. You'll probably take him gluten free if his blood tests and/ or his endoscopy are positive, and you won't if his blood tests are negative. It sounds like you're hesitant to put him through a challenge. I...have no idea how a challenge would go on a non-celiac individual, since I was definitely celiac when I went gluten free, or severely gluten intolerant. Bad things happen when I ingest it. I've heard it said that going gluten free can induce gluten intolerance even in normal individuals though, of varying severity, so it's really what you're willing to risk putting him through in a challenge situation.

[pricklypear1971]

It sounds like you've made up your mind already. You'll probably take him gluten free if his blood tests and/ or his endoscopy are positive, and you won't if his blood tests are negative. It sounds like you're hesitant to put him through a challenge. I...have no idea how a challenge would go on a non-celiac individual, since I was definitely celiac when I went gluten free, or severely gluten intolerant. Bad things happen when I ingest it. I've heard it said that going gluten free can induce gluten intolerance even in normal individuals though, of varying severity, so it's really what you're willing to risk putting him through in a challenge situation.

We're actually trending to trialling him gluten-free and milk free regardless to see if he improves with some behavior issues... Just wondering if anyone else has tried it for those specific reasons.

We would keep challenging and testing if he tests negative (but responds) to attempt an official dx. Since he's 9 he will have need of an official dx in the future if he has an issue.

[Roda]

My 10, almost 11 year old has had negative blood work every year for the past three. He even had an endoscopy with biopsy and it was negative. He has been on a gluten free diet now for a little over three months. I toyed with the idea off and on for the past two years, and couldn't commit him to it with negative tests. After his biopsy I bit the bullet and went for it. I have noticed a lot of improvements. Behavior isn't a problem with him now, it was up until he was 5(tempertantrums, hitting me etc.) and I have not noticed any change in his behavior overall. He is a sweet happy child who smiles all the time. Things I did notice were that he no longer battles with constipation and is regular as clock work. He is more pink in color, almost dainly stomach pain/gas/bloating and nausea are gone too. He has gained 6 lb. in three months and is just now starting to grow in height. He was becoming very sensitive about his height(one of the smallest in 5th grade) and probably is the size of an average 8 year old. His almost 7 year old brother, who is celiac, grew so much this past year since he has been gluten free, that he isn't that much smaller than him. We are hoping that the oldest boy will take a growth spurt like his brother. I do think the weight gain is not coincidence. I believe it is because of being gluten free. He typically doesn't gain that much weight in a whole year! We are going to do a challenge, but not to repeat any testing. It is for our own reference. He has had the blood tests at least 4 times and the scope. Our testing on him is done. I won't put him thru it again just to probably get the same answers.

[TBelle]

How old is he? Tests under the age of 4 can be unreliable. If they keep coming back negative and you see improvements on a gluten-free diet I would take him off gluten as he may have a Gluten intollerance but not be a coeliac. After you have done all the testing you have done all you can do with it, so I would take it into your own hands and see how he goes