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Dear Listmates,

I am responding to Dawn's post titled 'Endoscopy/Gastroscopy results-any suggestions.'

I was in a similar situation that Dawn was in, except that I had positive IgA (very high) rather than selective IgA deficiency.  My biopsy was normal.  Eliminating all gluten and also dairy and soy and corn, dramatically reduced my symptoms.  However, because I had eliminated the gluten, the only way to know was to do the genetic testing.

I did the genetic testing and it came out negative.  It was very frustrating, since I know that I must be gluten intolerant.  My IgA antibodies fell to almost normal levels (they are still a bit high) after being GF for a year.  After I got the genetic testing I decided to splurge  -- what the heck I wasn't going to do any damage!  I ate everything in site, even if only in small quantity, and only once, so it is hard to say what this reaction is due to.  I ate dairy, potatoes, corn, and yes "gluten."  I got very sick, and have been bloated, and swollen,  for almost 2 weeks. I can't seem to get rid of it, and I have been back on my very narrow diet.  So, clearly I have a problem with something. When I find out I will let this list know.

I think the genetic testing is important because it can rule in or out the presence of celiac disease as presently understood by the medical community.  If you don't have the gene, and your partner doesn't have the gene, you certainly won't pass it to your children.  I had the same concern.  So this is one really good reason to do it.

However, the bad thing is that it leaves you feeling  -- ok  -- now what?  Are you gluten intolerant and what does that really mean.  Now I have to see an allergist, and I am told that allergy testing is very unrealiable.  

I also wonder about other genetic testing being developed that would show a separate disease process associated with ingesting gluten, that might lead to a different disease constellation.  I think Dr. Fine is doing some of this work, but I do not really understand it yet.  I also don't understand my genetic testing results, and I don't know what other gene
locus might mean.  So be very careful to ask you doctor to explain this to you.

Even if your gene tests comes back negative, don't blow it like I did.  Stay on the gluten free diet if being GF leads to physical improvement.
 
D.

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