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Follow Up With Gi At Mayo Craziness

watata

By watata
in Coping with Celiac Disease

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watata Apprentice
watata
Posted

So I had my 6 week follow up appointment. They retested my TTG and my numbers are now within normal range. My GI still says I may not have Celiac. Even though the biopsy was positive and the TTG antibodies positive before going gluten free (now normal) and I do have the celiac gene pairs as well.

Copied from result page

Not sure how it is interpreted ... ???

Celiac Gene Pairs Present? yes

DQ Alpha 05:01,05

DQ Beta 02:01, 02:01

He said if I really wanted to try gluten again in about a year I could for a few weeks and they could do another biopsy. Why? Why would I want to make myself sick? I asked him? He's like well some people really need the confirmation? I'm like I get cross contaminated and I'm sicker than a dog and I'm only six weeks in. He didn't' say anything just said well if you want to try you can. we can't be 100 % sure you have celiac. I'm just like what proof do you need. I don't know. I'm just so not convinced anymore that mayo is all it is cracked up to be. I felt rushed and none of my questions were answered. He was like gi wise you are fine. good bye I'm sending you to endocrine. The endo was stumped and basically said I'll do some bloodwork and write you a letter in a few weeks. Ok whatever... I give up. I will do my own research and for gosh sakes my uro/gyn locally that takes care of my IC knows more about Celiac than these two docs. Very scary how minimal some docs know about celiac. I guess I will give mayo credit for finding it and putting me on gluten free diet, but whoa, what a disappointment in follow up care.

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Jenniferxgfx Contributor
Jenniferxgfx
Posted

Wait, you went gluten-free and then had your ttg rechecked at 6 weeks? And it's normal? That tells me you're doing well on the diet and responding just as you should. You need to continue eating glutenfree, NOT resume eating gluten!

Good luck. I've had such bad interactions with docs I can't be objective. I think this guy who told you this is irresponsible and practicing bad medicine. :(

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watata Apprentice
watata
  • Author
Posted

Wait, you went gluten-free and then had your ttg rechecked at 6 weeks? And it's normal? That tells me you're doing well on the diet and responding just as you should. You need to continue eating glutenfree, NOT resume eating gluten!

Good luck. I've had such bad interactions with docs I can't be objective. I think this guy who told you this is irresponsible and practicing bad medicine. :(

Yes I have been extremely strict on the diet. And yes think he is a pretty lazy doctor who just wanted to work 8 to 5 and not take call or work weekends. I could be wrong, but I am not impressed by him... not at all... not in the slightest.... but there are good and bad docs wherever you go. Hence why you cannot trust every one you meet no matter how qualified they are . I have had some really good docs and really bad ones. I have had the "best" surgeon in town, mess me up for life. You have to look out for yourself.

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Newbee Contributor
Newbee
Posted

I find this all very confusing. So you had positive tests for celiac (including the biopsy) and the doc told you you might not have it? Huh? I thought a positive biopsy always meant celiac. Why does he not think that is the case? Also, I'm surprised they tested your blood after only 6 weeks, but glad to hear it is good.

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watata Apprentice
watata
  • Author
Posted

I find this all very confusing. So you had positive tests for celiac (including the biopsy) and the doc told you you might not have it? Huh? I thought a positive biopsy always meant celiac. Why does he not think that is the case? Also, I'm surprised they tested your blood after only 6 weeks, but glad to hear it is good.

I am just as confused. I thought the same thing. Even the pathology report says that the damaged villi is most likely from celiac/sprue. So I really don't know. I'm as confused as all of you. I wish they would have just said you have it or you don't. I asked why they thought I didn't and he dodged the question over and over. Like I said I couldn't get a straight answer from him or the endocrine. Maybe because my blood tests weren't astronomically positive, just above normal slightly? I don't know. I give up trying to figure it out. But going from years of being nauseated and vomiting and being told I have gastroparesis to being able to get through a day without the nausea and vomiting and now being able to digest food more normally is diagnosis enough for me. Education in the medical field on celiac is obviously lacking.

Thanks for the support.

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Katrala Contributor
Katrala
Posted

While I've only been reading about Celiac for 6 months or so, this is the first time I've read about someone having a positive blood test and biopsy and a doctor saying they may not have celiac.

Since the "Gold Standard" for many doctors is a biopsy, it makes no sense to me for him/her to say that you may not have it.

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