Sons Bloodwork - Need Help Understanding

[spacemama]

Hi there everyone! I am new to this forum as of 10 mins.

I have some test results that are a puzzle and I am ready to call it as a mom and say he is celiac - and go gluten free for life. I want your thoughts because after 4 years of chasing down a reason for my sons illness, I don't want to miss something. Here is the story:

We have 5 kids, two different dads. At the birth of my second set of twins, it was apparent that "N" was autistic. The first line of defense is to remove gluten and casian. And so we did. My son Jake who was 9 or 10 at the time also went gluten free. We did it as a family. We did it for a while and then we stopped because Noah wasn't growing and was sick. We went back to eating normal. Jake started to change. He began have serious foot cramps, trouble sleeping and in spring of 09 was diagnosed with central nervous apnea. The pains became severe and he was put on Neurotin for neuropathy. January of 10 we went gluten free again because now we were trying to help Jake. At 25 days gluten free He had some blood work down because his bio-dad wasn't supportive of the diet. Jakes numbers were:

TTa IGA <3

IGA serium 168

Gliadin antibody IGA 6.

so would they have been positve on gluten he was only 9 at the time?

We eventually went back to gluten and Jake continued to "regress". His school work went from thriving to dying. His hand writing went from cursive to dysgraphic print. He was dx with tourrettes, depression and he has gotten to where I have to homeschool him because he gets confused. He is smart and if you go slow enough he can get there. He almost seems drunk. He ticks and spins. It is very much like late onset Autism. He is even showing signs of delayed puberty. He hasn't lost the teeth he should. It is like Jake stopped. We have had more test done showing that his T-cells are high and that his IGG is high. The list goes on but no answer. One day I asked Jake if he felt better gluten free and he said yes. He has to go to the bathroom as soon as the food is in front of him, smells can make him sick. So I told everyone we are going gluten free again but this time I had test done first. But they didn't do the same panel. This time they did Gliadin IGG and it was 16, with 17 being positive. 11-19 is euivocal, is that just for adults? Now he is only 11 so I have read that the numbers are different. We know for a fact that Jake is having some kind of auto immune reaction.

What are your thoughts. Do I push for the biopsy. The kid has been through so much. Do you have to have that just to keep everyone off your back?

Thanks!

Tamara

[nora-n]

was this the new deaminated gliadin Ab?

If the kid is on enough gluten, maybe push for the biopsy since the number was almost positive.

If it was the new deaminated gliadin test, it is very specific for celiac.

About age of child: Children below 3 years have less immune response so testing is not so accurate

Celiac is just one litte bit of the gluten spectrum, and I think you have more severe issues going on than just celiac

[Skylark]

I don't think you have to justify gluten-free/casein-free for late onset autism or autoimmunity. People shouldn't be on your back because it's very well established diet and helps a lot of kids, celiac or not. The gliadin IgG seems to be pointing the way as well.

Biopsy is a tough call. I think it's OK to follow your heart and see if he gets better on the diet. You will still take him gluten-free even if it's negative since he says he feels better so does it really matter?

[spacemama]

  On 1/11/2012 at 10:51 PM, Skylark said:

I don't think you have to justify gluten-free/casein-free for late onset autism or autoimmunity. People shouldn't be on your back because it's very well established diet and helps a lot of kids, celiac or not. The gliadin IgG seems to be pointing the way as well.

Biopsy is a tough call. I think it's OK to follow your heart and see if he gets better on the diet. You will still take him gluten-free even if it's negative since he says he feels better so does it really matter?

Thanks Ladies, an odd twist of events has brought my younger son who is not Autistic (Noah's Twin) to be getting the endoscopy next Tuesday. Turns out he has malabsorption, low growth hormone and is passing sugars and very short stature. The GI suspects celiac and told us to wait to start the diet until after the biopsy. So if he comes back positive then there will be no questions on the diet for Jake.

Thanks,

Tamara