Do I Need A Specialist?

[cheriloving66030]

My 16 year old son was diagnosed with celiac at 18 months and started having seizures at age 14. I just recently found out about the connection between the two and am wondering should he be seeing a specialist for his celiac disease as well as a neurologist? He has never seen a GI doctor since he was first diagnosed. Now I am feeling that maybe if I had known of the other problems he could develop maybe he should have been seeing a specialist instead of just watching his diet as a means of control. Any help would really be appreciated, as I am feeling completely lost. I just want the best medical care for him.

[mushroom]

Hi ,and welcome to the forum.

I am sorry to hear about your son's seizures. My younger brother developed seizures (I am sure he was undiagnosed celiac) later in life than your son - they were very atypical seizures and I understand your concern. But as for what a GI specialist could do to help with this problem, I am not sure. Certainly his pediatrician can test his blood levels to monitor compliance with the diet and lowering of his antibody levels which could be an area of concern, but if you would feel happier with a GI specialist, try to find one who is celiac knowledgeable because not all of them are and you could end up with one who knows little more than his pediatrician.

[frieze]

My 16 year old son was diagnosed with celiac at 18 months and started having seizures at age 14. I just recently found out about the connection between the two and am wondering should he be seeing a specialist for his celiac disease as well as a neurologist? He has never seen a GI doctor since he was first diagnosed. Now I am feeling that maybe if I had known of the other problems he could develop maybe he should have been seeing a specialist instead of just watching his diet as a means of control. Any help would really be appreciated, as I am feeling completely lost. I just want the best medical care for him.

This IS the only means of control! I would be suspecting dietary noncompliance, since i have known many 13/14 year old males, lol.

also check on the gluten free status of his anti sz meds. Getting blood work done to determin dietary compliance would be first on my list of things to do. If he resists, you probably have your answer!

You can try reminding him, sz=no drivers lic.

[Skylark]

Taking him to someone who will doublecheck celiac antibodies and vitamin levels couldn't hurt. As frieze said, the big thing is to be sure he's gluten-free so you haven't missed out on any special medical care.

[cheriloving66030]

I am sure I am going to sound really stupid but what blood test are you guys speaking of because it has never been brought to my attention and didn't even know one existed. I am wondering since he has been "gluten free" for over 15 years (considering that he is a teenager) would trace amounts of gluten that he may ingest cause seizures? Thanks for the help

[psawyer]

Your son was diagnosed 15 years ago, before the blood tests used today existed. Those tests measure antibody levels in the bloodstream.

A person with celiac disease who is following a strict gluten-free diet will test as negative for celiac disease. A positive test indicates that there is still gluten in the diet. A high positive suggests that the source is not accidental cross-contamination.

Edited to add: Yes, even small amounts could cause seizures in sensitive individuals. Since he has a history of seizures, strict 100% compliance with the diet would be a good idea.