High Ttg After 2 1/2 Years On Strict gluten-free Diet

[StephanieL]

As I had expected, the appointment was more of a formality. Now that DS is considered a patient of Dr. Fasano we hill help guide this process from here on out. We live in Ohio so a trip to Boston isn't a) ease 2) cheap. Now, my sons health is worth whatever it takes but there is reality that going there again and again isn't going to happen.

 

As it stands now, he wants to see DS's biopsy slides again.  If the were negative, he wants to do a challenge till a) he can't any more, his levels rise or c) 6 months.  If they were positive then he wants to scope now and compare the damage. We will have to decide if we go back to Boston for a biopsy or the Celiac center about a 3 hour drive from here. 

 

So we walked away with a picture of DS with Dr. Fasano and a plan

 

I would really delve into the other autoimmune issues even if you hold off on the biopsy.  When after a year we still had high levels we did a full on food lockdown and even tested things we were not 100% confident in.  We did find one thing and I though "Oh yeah! This is it, problem solved!" but alas, it wasn't that easy  Again, if you need to vent or ask things or throw things out there, let me know! I'm no Gemini but I have some mad food issue management skillz

[dilettantesteph]

I think that your plan sounds good.  That is similar to what we did.  We came to the more strict diet gradually.

We did have problems with the cafeteria.  My son's school was unwilling to make any chances to cafeteria protocol and he seemed to get constantly glutened there until we arranged for him to eat elsewhere.  That was around age 12.  I imagine that there are precautions that could be taken instead if the school is willing.

I found a review of autoimmune conditions and celiac disease done by Dr. Fasano that might interest you: Open Original Shared Link