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Celiac Gene Test - One Step Closer
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I asked my PCP if he could test me for the gene last month. He did it without any questions. If I had known it was going to be that easy I would have asked him months ago. This morning I found out I tested positive for one of the celiac genes. He told me (through his secretary) if I'm not having any GI symptoms there is no need to see a GI doctor. He apparentely has not a clue my GI symptoms are minimal but skin and balance is where it all shows up on me.

Needless to say, I was overjoyed to hear the news (am I crazy to say that?). While it isn't a defiinite diagnosis I am one step closer. The problem with me is that I am the kind that DOES need a DEFINITE diagnosis for various reasons and that is going to be pretty hard to get without ingesting lots of gluten which I am not willing to do.

I guess my chances that I actually do have celiac are 1 in 30 which still makes it a long shot but I plan on making an appt with the celiac specialist and I'll see what he has to say about all of this. At least now I feel I have something concrete to give to him.

Jane

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30% of the population (U.S?) has at least one gene. So while its entirely possible that you do not have it, it is also very possible you may develop it.

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Statistically wise it's a long shot that I have it but considering the rash I've had for almost a year (it's 95% gone after a flare up when I experimented with gluten in Sept/Oct) as well as other odd assorted problems throughout the years I think it is very possible. If it wasn't for the fear that a lot of gluten may posssibly give me vertigo I would do the gluten challenge in a heartbeat.

I have an appt in Jan with the celiac specialist. My plan is to eat a bit of gluten (a cookie or two a week) for about a month before the appt and maybe it will give me enough of a rash for a biopsy or at least for him to say it sure likes like dh to me. We'll see how it goes . . . .

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    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • What a gross title–it bothers me and I wrote it! It wasn't my idea originally. The research paper the data came from was entitled, "Experimental hookworm infection and gluten microchallenge promote tolerance in celiac disease" published recently in the Journal of Allergy and Clinical Immunology. View the full article
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
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