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Waiting On Test

Bune

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Bune Newbie
Bune
Posted

Hi all!

I've had various digestive issues for over 6 years now. Mainly diagnosed as GERD. In the last year or so my symtoms in addition to reflux have increased. My Dr. suggested that Celiac might be the cause of my increased symptoms. I have to have an EGD (Endoscopy) done for the GERD to biopsy my esophogus so he said he'd biopsy my small intestines while he was in there.

After doing some reading on celiac disease it all makes sense and I would be surprised it he tells me I don't have it. Eventhough the thought of eliminating gluten from my life seems to be a bit of a daunting task. I would actually be relieved that there is someting that I can do about all of my pain and symptoms and it doesn't involve drugs with nasty side effects.

It kind of bugs that I have to wait two weeks to get a test (plus however long it will take to get results) before I can make any changes, so I guess I'll have to live with the pain and bloating until then. I'm just going to take the opportunity to enjoy some foods that I know would be off limits if it is celiac disease.

I just thought I'd drop in and say Hi, I'll post again once I know more.

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plantime Contributor
plantime
Posted

Do your research now, so you will be prepared. Let us know how the testing turns out.

Bune Newbie
Bune
Posted
  • Author

Thanks Dessa. I am certainly doing a lot of research and reading. It's exciting (that I may have found the answer and can finally do something) but daunting, Gluten is in everthing. The obvious things seem easy enough to replace or cut out but it's the hidden things that are hard to keep up with. Eating out will be the biggest change. Right now I eat out pretty much everyday for lunch and I don't think any of my current restaurants will do the trick, so that will be a major change. I'll have to start brown bagging it.

  • 2 weeks later...
Bune Newbie
Bune
Posted
  • Author

I had my EGD yesterday. Doc didn't say much other than the results would be available in about two weeks and that my Espophagus (because of Reflux) and Small Intestine were very inflamed. When my mom (who took me) asked about the probablity of Celiac he would only say that it was very possible. When she told him that we were starting a gluten-free diet he said that was probably a good idea.

I go back to see him in a month.

Does anyone know about the testing for other allergies to food? Should that be done with my GI or my Family Practitioner or another specialist? Is it needed right away or should I just wait and see if I'm still having issues after cutting out Gluten? I sure would like to have the quickest route to feeling MUCH better Quickly!

Thanks for listening!

Brenda

  • 2 weeks later...
Bune Newbie
Bune
Posted
  • Author

GRRRRR! i just got a call from the nurse at the Dr.s office. She said that the biopsy came back normal and that I do not have Celiac's. The results from the Gastric Emptying scan came back that I have Gastric Parisis (stomach does not empty on time) the answer to that is to put me on Zelnorm, which I started about a week after my EGD test (which I went gluten-free immediately after) with in a week I was completely sick and in pain again. So now I'm back at square zero with no answers except to take drugs that just make things worse for the rest of my life.

I'm so frustrated. My next appt with the GI isn't until 8/25. I don't want to start eating gluten again, I've been feeling so much better.

Is it possible that I still have celiac disease if the Biopsy comes back normal?

Guest nini
Guest nini
Posted

yes it's possible.

but I am one of those people that believe that gluten intolerance is the cause of a lot of conditions. It's possible that they didn't take enough samples or took samples in areas with no damage, or you just don't have damage YET. I believe that if your body is telling you that gluten is bad, by you feeling better being gluten free, then there is your answer.

KaitiUSA Enthusiast
KaitiUSA
Posted

The problem with biopsies is they can rule celiac in with a positive biopsy but they can't rule it out with a negative one. There could be no damage as of yet or sporadic damage that they missed.

Were your blood tests positive? If you had blood tests which ones were done?

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Bune Newbie
Bune
Posted
  • Author

Kati

No blood tests. and now that I've been gluten-free for two weeks they would be skewed right?

I'm going to try to find a way to do the Enterolab testing so that I don't have to be eating gluten.

so frustrating!

Brenda

KaitiUSA Enthusiast
KaitiUSA
Posted

An Enterolab is probably your best option at this point.

Blood tests would not be valid now since you have been gluten free.

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