21 replies to this topic

[squirmingitch]

They should have done the IgA at the same time. Problem is..... gluten free & it will turn up negative.

[Irishgirl76]

I thought the Total igA was separate from the gluten testing? Just to make sure your body is producing sufficient IgA?

[squirmingitch]

http://americancelia...ease/diagnosis/

[Irishgirl76]

Just to update, we finally had the genetic testing done, and all of the children turned up HLA DQ2 positive.

[squirmingitch]

So that means they have the genes for celiac but not that they WILL get celiac. If I recall correctly 1/3 of the populace have the celiac gene. However --- with the family history.......

 

How are things going now? Is your little boy still getting rashes? You do know don't you that the rash can present for 2 yrs. or even longer  EVEN AFTER GOING STRICT gluten-free. All the antibodies have to get out of the skin.

 

I was re-reading this entire thread so I could remember what all went on & want to mention that I get dh on the backs of my hands. You had questioned that in reference to yourself. Actually, there are few places, very few places I haven't had dh.

[Irishgirl76]

Thanks, squirmingitch. He has had minor flare-ups, but nothing major. I, on the other hand, had a major outbreak that lasted about 3 months (and is just settling down now). It was by far the worst I've ever had. At least I assume that was what it was. Whatever it was it was horrible, and the itching would actually wake me up in the night.

[squirmingitch]

OY! I know what that's like! I had a spontaneous outbreak that began in Sept. & lasted for 5 1/2 months --- well, I still have a lot of places but the outbreak I'm talking about was MASSIVE & I had lesions that were horrible --- BIG lesions & it got terribly painful. I now live in fear of having an outbreak like that again. If I had not been 5000% sure I was not getting any cc from anywhere then I would have sworn I had been glutened somewhere along the line. Just plugging along, putting in my time --- 15.5 months gluten-free now.

 

I'm very glad to hear your ds has only had minor flare-ups. I'm thinking that's an indication that you took him gluten-free before he got to the point where he will take as long to get the antibodies out of the skin as we will. YAY!

 

Hang in there!