Wednesday, January 28, 2015

Official test? Do you or don't you?

Do you or don't you?     I'm talking about THIS article regarding whether or not one needs to be tested for celiac disease.

It takes--on average--a decade to get checked for celiac in the United States. Source cited

After my sibling was diagnosed, I asked my GI to test me in 2006.  I've known since 1993 that I could/would get another autoimmune disease. When I was discharged from the hospital, my sibling who was with me took me to the college library a few days later and brought me any books that referenced my type of colitis.  GASP, I thought, I have a 33% change of having another autoimmune disease ---and there are literally hundreds of them.  Have I looked up that stat since 1993?  No. But it's always stuck in my mind.   Since I have another autoimmune disease, plus strong family history of celiac disease (sibling, paternal family), I wanted to find out if I had celiac. Instead, when I asked to be checked,  I was told "you have colitis, you don't have celiac".  They didn't like my response of "I could have both".

My PCP ended up doing the blood test, which was negative.   I wasn't surprised.  First off, a negative blood test for celiac doesn't mean you don't have it. It just means that the blood --for whatever reason--isn't showing you have celiac.  If you have a positive blood sample for celiac, then you have celiac, but a negative sample doesn't matter much, though most doctors look at it and say, "You don't have it".   Since I'm on an immunosuppressant, my blood doesn't work well with tests like this. I didn't show a reaction to anything on a food allergy panel, not even to the control to which "everyone" reacts.

The Mike suggested I go gluten free. OMG I felt sooo much better, and I haven't  look back.   Some people say I'm not celiac then, because I didn't have the biopsy. Well, it's not known if I'm celiac, but I believe I am.  I am at least gluten intolerant, but with the strong family history, I'd say I'm celiac.  I do not knowingly 'cheat' on the gluten free lifestyle plan. I eat gluten free 100% :-)   In order to be tested for celiac now, I either have to have the DNA test, which only shows if I carry the gene, not if it's been activated, or I have to eat gluten for at least three months (according to the University of Iowa Hospitals and Clinics).

Most people who have celiac, have been gluten free, can't go a few days eating gluten, let alone three months, and still function in society.  This is because once you eliminate your intolerant food, then you've also eliminated any--for lack of a better word--tolerance to the intolerant.  Your body completely sees this food as the enemy and attacks because of it.

Gluten free and proud of it.  

No comments:

Post a Comment