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Never Even Thought This Was Possble!

morningstar38

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morningstar38 Newbie
morningstar38
Posted

I had an upper EGD last July due to an inherited possiblity of esophageal cancer after I had symptoms of GERD and the pictures showed gastritis as well as possible barrets syndrome. Well, the gastritis seemed to go away, but the diahrea NEVER went away! I have been suffering with diarrhea ever since!

So when I had my follow up appointment I mentioned the above points, and the doc got very concerned. I now have an appointment for "routine" blood tests as well as a colonoscopy and since they didnt' get the necessary biopsy I also get another upper EGD as well! UGH... I Never thought about the possiblity of Celiac disease until I started researching the symptoms and remembering my history (I had horrible stomach problems as a child). I now have epilepsy which I understand there is a connection.

She asked about fat in my stool and other things which of course on the spot I couldn't think about, but now I know for sure I have! I also stopped eating gluten for about 6 days and I felt so much better, I have to start again to get ready for the tests on Nov 1 and 3...but after that....NEVER again...I don't care what the results are!!!!

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mushroom Proficient
mushroom
Posted

Hello and welcom to the forum morningstar. Yes, it is most unfortunate that doctors seldom think of celiac disease - you are actually lucky that yours did consider the possibility. Make sure she takes at least 6-8 samples in the biopsy as some doctors will only take two or three. The damage is usually not unfiorm and it is often missed if insufficient samples are taken. You will be able to go gluten free as soon as the blood tests (assuming they are the celiac blood tests) and endo are done - you don't have to wait for the results to start feeling better :)

Roda Rising Star
Roda
Posted

Unfortunately biopsies for celiac are not routine on an EGD, unless they are doing it specifically for it. Some day I wish that the minimum of 8 samples would be part of a standard EGD. Your story is all to common. At least your doctor was smart enough to consider celiac. A lot of the time if the patient didn't mention the possibility, some of us might not be diagnosed.

morningstar38 Newbie
morningstar38
Posted
  • Author

Hello and welcom to the forum morningstar. Yes, it is most unfortunate that doctors seldom think of celiac disease - you are actually lucky that yours did consider the possibility. Make sure she takes at least 6-8 samples in the biopsy as some doctors will only take two or three. The damage is usually not unfiorm and it is often missed if insufficient samples are taken. You will be able to go gluten free as soon as the blood tests (assuming they are the celiac blood tests) and endo are done - you don't have to wait for the results to start feeling better :)

Yes Mushroom, actually she said the celiac blood tests were "Routine". I don't know what they plan to do with the EGD I had one earlier this summer (for barrets syndrome ...2 relatives died of esophageal cancer) and they didn't get the right bioposy so they wanted to do that one again, also a colonoscopy. However, once she sees the celiac blood tests results, she will probably want to add the celiac biopsy to the tests to the ones I am already having. (hopefully!)

mushroom Proficient
mushroom
Posted

Yes Mushroom, actually she said the celiac blood tests were "Routine". I don't know what they plan to do with the EGD I had one earlier this summer (for barrets syndrome ...2 relatives died of esophageal cancer) and they didn't get the right bioposy so they wanted to do that one again, also a colonoscopy. However, once she sees the celiac blood tests results, she will probably want to add the celiac biopsy to the tests to the ones I am already having. (hopefully!)

Don't just hope, insist on it! :P Sometimes you have to be pushy.

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