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I Suppose I Don't Have Celiac Disease

Mnicole1981

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Mnicole1981 Enthusiast
Mnicole1981
Posted

My primary doctor just called and said she "thinks" my biopsies came back okay. Alerted me that I was anemic, which we realized last year. I have not heard from the GI doctor. The conversation was weird. She asked me if I had seen the GI yet. If you are asking me that, then how would you think my biopsies came back okay?

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kareng Grand Master
kareng
Posted

Sometimes labs, xrays, and pathology reports will be sent to the doctor that did them & the regular doctor. So in this case, they sent the pathology reports (biopsy reports) to the GI who did them and your regular doctor. Get a copy. Your regular doctor may not understand the results and would prefer the "expert" :blink: GI tell you about them.

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I just don't think she even has the results yet. Why ask if I have even seen the GI if you have my results back?

Nobody wants an autoimmune disease, but a medical explanation as to why I was so sick since February would be nice.

kareng Grand Master
kareng
Posted

I just don't think she even has the results yet. Why ask if I have even seen the GI if you have my results back?

Nobody wants an autoimmune disease, but a medical explanation as to why I was so sick since February would be nice.

Let me try again. She may have gotten the results but not understand or feel she should interpet them. They don't just say "Patient has Celiac". She would prefer you speak to the GI about the results. If this were me, I would call the GI office and see if the results are in.

The findings on this may not tell you what is wrong. It may just tell you what isn't. You can try gluten-free and see if it helps. You may be gluten intolerant but not Celiac.

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

Let me try again. She may have gotten the results but not understand or feel she should interpet them. They don't just say "Patient has Celiac". She would prefer you speak to the GI about the results. If this were me, I would call the GI office and see if the results are in.'

The findings on this may not tell you what is wrong. It may just tell you what isn't. You can try gluten-free and see if it helps. You may be gluten intolerant but not Celiac.

I think I am going to go ahead and go gluten free regardless. I should have found my own GI. I didn't mean to come rudely if I did.

kareng Grand Master
kareng
Posted

I think I am going to go ahead and go gluten free regardless. I should have found my own GI. I didn't mean to come rudely if I did.

NO. Not rude. I just didn't make it clear.

Call the GI office and see if the reaults are back. Sounds like the only way you are going to find out.

trayne91 Apprentice
trayne91
Posted

I think your dr. Meant have you seen the gi doctor yet - since the results have come back (not have you seen the gi doctor in the first place).

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Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I'm not sure because she also asked me if he found anything... which she should have known already if she actually had my results.

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I called the GI's office today and they stated that they still haven't received the results of my biopsies. It was a week ago today that I had my EGD and colonoscopy.

I joked with my coworkers that it probably came back positive, but since I am Black and it is just not possible for me to have it, they keep checking it over and over again.

pricklypear1971 Community Regular
pricklypear1971
Posted

I called the GI's office today and they stated that they still haven't received the results of my biopsies. It was a week ago today that I had my EGD and colonoscopy.

I joked with my coworkers that it probably came back positive, but since I am Black and it is just not possible for me to have it, they keep checking it over and over again.

I think you should print this and hand it to all the fools who say that. Open Original Shared Link

And I'd be really interested to know if that percentage is influenced by the number of Black Americans who have medical insurance. There are studies out there showing underrepresentation in other conditions - and the train of thought is they just aren't getting tested.

Astrid1986 Newbie
Astrid1986
Posted

So why did your regular doc say she "thinks" your results are okay? Would she have expected to hear from the GI by now, a nd since she didn't, concluded that a ll must be fine?

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I'm not sure. She does stuff like that often. She called me a few weeks ago telling me my FMLA paperwork was ready to be picked up, her intern called the next day saying it was ready. When I went to pick it up, it was not ready. She filled it out when I got there.

I have been with her since I was 18, but it almost seems like she is not listening to you, especially since they started using laptops instead of paper..

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      Wow! Thank you @trents I  really appreciate the responses. This line of diagnosis has me questioning a lot of symptoms over the course of my life. Very validating and very much a bummer at the same time. 
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      Yep, you've got celiac disease. That is a high score. In the U.K. you could have been diagnosed on the TTG-IGA score alone and not needed an endoscopy/biopsy. But I realize your physicians were not looking for celiac disease in the first place. But it also makes me wonder how much of your bowel issues are tied to celiac disease whose onset may actually have been years ago. Taking years to get a celiac diagnosis after onset is typical because the symptoms mimic so many other bowel diseases and many of us have "silent" celiac for years, meaning we have no or few symptoms until damage the small bowel lining becomes quite advanced and other symptoms, e.g. iron deficiency anemia, start showing up.
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      This is a good point. The primary things I’ve been able to tolerate are crackers and pretzels and bread slices (also rice and potatoes but ntp). I’ve been loading up on gluten based snacks so the testing should be valid as far as I understand. 
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