Light Bulb Moment

[athome1998]

I have totally stumbled upon this site but am so glad I did.

My husband and I for the past year and a half have been from doctor to doctor to social worker for our son who is now just over five. He is not bowel trained and he has these "grainy stools" and his poor bottom gets rashy and red and the will not sit on the toilet to poop.

Our doctor (family phy.) has said it may be behavioral...so we were sent to the Kinsmen center...nope he's good. after a year wait list and an Autism Spectrum test. Then he was sent to a speech pathologist who is now working on his speech.

I am now going back to my family dr. b/c I know it's physical! And I'm taking it into my own hands.

What tests exactly should I be asking for. I want to get my son diagnosed before school starts next year and have him not scared to go to the bathroom.

Thanks

Christine

[Dixiebell]

Welcome to the forum athome1998.

While you are having blood drawn you might want to go ahead and get vitamin and mineral levels checked too. I think the main one's are A, B's, D, E and iron. K might be one too.

Celiac tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG

[ravenwoodglass]

After you are done having the tests run that were mentioned do try the diet no matter what the results. Children have an even higher rate of false negatives than adults. Does he have a rash anyplace other than his bottom? Is the rash blistery and itchy? The rash could be DH and that would be diagnosed by a derm who would biopsy the area next to the rash to look for antibodies in the intact skin.

[athome1998]

He has been diagnosed with eczema when he was a baby. He had it really really bad, now it's just small bumps all over his body with patches once in awhile that pop up due to the weather. I try to keep his skin hydrated and lotion ed as much s possible.

But his bottom is really bad and he doesn't even like me touching it, he screams when I have to clean him or bathe him. I feel horrible. We have to pin his legs to get him fully cleaned b/c of the sandy grains all over. Poor little man.

Thanks for heads up.

After you are done having the tests run that were mentioned do try the diet no matter what the results. Children have an even higher rate of false negatives than adults. Does he have a rash anyplace other than his bottom? Is the rash blistery and itchy? The rash could be DH and that would be diagnosed by a derm who would biopsy the area next to the rash to look for antibodies in the intact skin.

[eatmeat4good]

I just read your post.

Thank God you found this cite and you are going to advocate for your son.

Poor guy, he is really suffering.

I wanted to let you know that I use Walgreens brand of Pain Relieving Ointment for the rashes and sores and even for the sore bottom.

It is Benzocaine. You might ask your Dr. if it is OK to use for your son. It helps a great deal with the pain. I tried everything but this is the only thing that ever provided any relief for the Dermatitis Herpetiformis, if that is what his rash is. Given that there may be some time between testing, diagnosis, and the time it will take for the rashes to heal after you go gluten free, I just wanted to give you something that may help your son's pain.

It is worth a try.

[T.H.]

I'd second going gluten free, regardless of test results.

A good friend of mine on an extremely limited budget has a little one who sounds very similar to yours. Grainy stools, horrific red, rashy bottom and such. She lucked out because three people in my family were diagnosed with celiac disease just a few months before the stool issues started, and we'd been talking about food issues and celiac disease, and so when it happened to her midget, she already had a head's up about it. Good thing, as she hasn't the money to pay for any testing and just had to figure it out herself!

Going gluten free has cleared it all up, too.

Also, going gluten free for my son - who was negative on the test - helped his speech and learning issues, so that can be gluten related, too.

[athome1998]

Thank you for everyone that replied. When I first stumbled upon this site, I literally cried b/c it was like I was reading everything about my son on others posts.

I am definitely going in armed with Dr.s I want to see and tests I would like done. I am in Canada but that doesn't necessarily mean things get done any faster, if anything it's slower and things get overlooked, which is why I am getting as much information ahead of time. The blessing is we don't have to worry about the cost of test. Huge blessing on our part, b/c my son is my youngest of four.

[cap6]

athome1998 - i cried when I found this site too! It makes celiac so much easier to handle.