To Scope.or Not To Scope

[Rachele75]

I have a 4.5 year old son with autism. He has never had formed stools, always has a rash on the back of his arms. And has a very self limited diet primarily made up of gluten and casein loaded foods. We just had a celiac panel done amd his tTg came back as positive (his level was 40 and the high end of normal was 20). We saw a pediatric GI yesterday and she wants to do a scope with biopsy to male a definitive diagnosis. She also said that the way his bloodwork read would usually indicate celiac 99% of the time.

My question is should we put him through the scope or just begin removing gluten? I had been considering having him go Gluten-free Casein-free anyway as I know it can be beneficial to many children with autism. The possibility of celiac just seems a a giant push in that direction.

[momtoagfkid]

We just wrestled with this decision for my 4.75 year old daughter.  In the end we opted to to put her through with the endoscopy.  On a personal level the definitive diagnosis helped me to have the confidence I needed to handle the changes at home with steadfastness and conviction.  On a broader level I believe more definitive diagnoses will help raise awareness, research, funding, and support.

After the fact I came across this article and I think it makes a very good case for seeking a diagnosis.

Open Original Shared Link

[mamaw]

my opinion is I would scope him...this way there never would be doubt's down the road. I believe it makes the transition easier when one knows for positive... I will say I also have seen so many positive things come

to children with Autism Spectrum on the gluten-free diet... I know not everyone would agree with that statement..

[nvsmom]

Is your doctor willing to diagnose him with celiac based on the positive tTG test?  If so, the scope isn't really needed for a diagnosis.  The tTG IgA test is specific to celiac disease about 95% of the time.  That means that maybe 1 in 20 positive results are caused by something other than celiac disease (usually diabetes, crohn's, colitis, thyroiditis, liver disease, or a serious infection) but those false negative are always weak positives - not double the upper normal limit.  I agree that you could call it celiac disease with 99% certainty, and that's pretty certain when it comes to medicine.

See page 12 for more info: Open Original Shared Link

 

If the doctor is not willing to give a diagnosis of celiac disease without the biopsy, you may want to consider it.  Some schools and care givers may require a diagnosis before they will accommodate his special diet.  You'll need to think about the future, when he is not always in your care, and others are having to provide meals for him.

 

If the doctor wants further proof, you could retest after he has been gluten-free for at least 6 months.  If he is improved, and his autoantibody levels come down, that is further proof that it is celiac disease.  Just be patient while waiting for improvements.  At 6 months gluten-free most of us are not recovered, we are just well on the way to recovery.  KWIM?  

 

Welcome to the board.  

[Lela]

My son was diagnosed about a month ago. I was a little nervous about scooping but it was the best thing we did. It was a quick procedure and he handle it very well. By the time we got home, he was already back to his normal self. I do think having a 100% confirmation helps to take is serious to follow the diet. He is doing great!