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Finally A Diagnosis! Sort Of...
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8 posts in this topic

Going through some strange emotions today after talking my GI...

 

Well, we've ruled out Celiac as best we can considering that (due to ignorance) I've been gluten-free for 8 months, never had all the proper tests, and now can't tolerate a gluten challenge at all. But it's too late to hit the rewind machine...

 

Since I also don't have the main celiac genes (though I do have DQ9, which in two studies was linked to celiac), my doc is comfortable now saying I have (drumroll):

 

Either Non-celiac Gluten Intolerance OR a wheat allergy OR probably both.

 

I've been scoped on both ends, cat-scanned, ultrasounded and x-rayed and nothing too serious has popped up. I may do a "barley challenge" just to see if I can narrow it down any more LOL...

 

Soooo... I guess we'll never know 100% for sure about celiac, and I have to get used to being officially NCGI and/or allergic to wheat. I have to say, it feels strange to have one of those diseases (NCGI) that a lot of doctors don't even believe exists yet.

 

None of this lessens my commitment to being gluten-free, I just feel weird having what some docs see as a "made up" disease. :( Like they're always going to see me as a nut job when they read my chart, sigh... Well, I am a nut job so I guess I should accept it LOL...

 

 

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Any type of gluten intolerance is a GI's area, and if the GI says something is causing your symptoms, then it's not made up... right?  :D  You have a Gluten Intolerance, you're just not sure if it's caused by celiac or not. I think doctors are starting to see gluten intolerance almost as a spectrum disorder like autism; there various forms of autism out there (aspergers etc) but it still boils down to the same thing. I don't know if I make sense today.  ;)

 

I'm glad you have a diagnosis even if it's not as clear cut as you would have liked. I have a feeling that as the years go on, fewer and fewer doctors will "pooh pooh" a NCGI diagnosis.... You're a trailblazer!  ;)

 

Best wishes

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Did your doctor test you for the wheat allergy? It's a pretty straightforward test. It seems odd that your doc would do bloodwork to search for celiac, but not do the proper bloodwork for the allergy. You don't have to be eating wheat to have the allergy test.

 

And I don't agree that celiac has been ruled out. Just because you're not in a position to have the tests done doesn't mean you don't have it. Did your doc look at other bloodwork, like vitamin levels, for other signs of malabsorption? There are more ways to assume celiac without the traditional celiac blood test and biopsy.

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Thanks nvsmom, I like the sound of being a trailblazer lol. And yes, you made sense, I personally believe it's all part of a spectrum too.

 

Kitty, it was a previous doc who did the celiac bloodwork. We haven't done the wheat allergy test because my symptoms were fairly clear-cut: the last three times I tried to eat wheat for a challenge, my lips, face and eyes puffed up pretty bad and I got a rash on my stomach. Also a sore mouth and trouble swallowing. But you're right, maybe a blood allergy test is the next step.

 

He tested me for malabsorption (fecal fat test) which came back negative, but not vitamin levels. I agree that celiac hasn't been totally ruled out, I just don't think in my case it can ever be ruled IN.

 

I'm still trying to figure out why it matters to me either way, since I know the treatment is the same. I have a piece of paper saying I'm allergic to wheat if I ever need something like that, so I'm not sure why I'm feeling like some kind of "phony" until/unless I get a super-definitive diagnosis... :(

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I think Kitty was right on.  I want to add that genetic testing is not as accurate as the 98% quoted.  My genetic test did not match up to my biological daughter.  When I questioned the results I was told, "test has that 2% known missed, genes mutate, and every blood test has a 30% human error rate."  Add to that the that may be other unknown Celiac genes.

 

It matters when you haven't been given a clear cut answer.  You have no doubt it makes you ill, but you don't have the full understanding WHY it makes you ill.

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You have no doubt it makes you ill, but you don't have the full understanding WHY it makes you ill.

 

Yes, you hit the nail on the head... !

 

Going back over my symptoms, I'm starting to agree with Kitty and y'all. There is no doubt that I'm somewhere on the spectrum of gluten intolerance, and I'm pretty severely intolerant at that. I'll be meeting with my doc in a few weeks to discuss all this, but I think I just need to accept that he may not write "gluten" anywhere in my chart. At least "wheat allergy" is there.

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I am trailblazing right with you, got my NCGI diagnosis in January after negative gene tests. Didn't test for 9. So, looks like we will be first in the queue when the new tests for the celiac spectrum come out :)

Edited to add there is no test yet, but maybe one day (sigh)

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That's right, I'll be there too, heh heh.... I think Dr. Fassano (spelling?) is working on a test if I'm not mistaken.

 

I just got an email from my GI saying "No more wheat for you!!" I guess that's as close to an official diagnosis as I'm gonna get. Maybe I should frame the email lol.

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