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New Think I Might Have Celiac

kara7

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kara7 Rookie
kara7
Posted

Hi, My name is Kara. I am 23 and have has stomach problems since I was about 13. Things have just recently within the last 2-3 years gotten worse. Two years ago I had a colonscopy that showed lymphocytic colitis. My doctor prescribed me Asacol and sent me on my way. I was still dealing with horrible diarrhea up to 10 bm's a day. Then this past summer my symptoms totally changed. I was all of the sudden constipated and bloated I looked like I was 6 months pregnant. I have had a gallbladder ultrasound done that shows I have a fatty liver. I am constantly fatigued. Diarrhea almost everyday with intermittent constipation. I have been tested for celiac and the lab tests came back negative. I do have a low B-12. A couple of weeks ago I was very strict on eating no gluten, and I think it helped. My whole body felt better. Then I read that you shouldn't stop eating gluten if you are going to be tested. I am gaving another colonscopy and EGD on 12/7 so I have to suffer until I have this done. Do you think I could have Celiac eventhough the tests are normal? Thanks for your help. So tired of feeling crappy all the time.

Kara

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lonewolf Collaborator
lonewolf
Posted

Welcome to the forum!

Yes, you could have Celiac Disease even if the tests come out negative. There is a significant rate of false negatives. You could also have non-Celiac gluten sensitivity, which won't show up on mainstream Celiac tests, but can be just as bad. You don't have to be on gluten for a colonoscopy and I'm sorry I don't know what an EGD is. You do want to stay on gluten if you're being tested for anything specifically for Celiac, but you could always try the diet otherwise and just see how you feel.

Lisa Mentor
Lisa
Posted

Kara:

I am sorry that you are having a tough time.

I would like to suggest something that I think is very important. Instead of having a colonoscopy again, I would strongly suggest that you have an endoscopy (small intestine exam by scope). You already know what is in your large intestines. Please exam your small intestines. And, if you choose to do so, please continue eating gluten. Ask the GI to take 8-10 biopsy samples to be tested. (INSIST, AND, NO LESS..you are paying for a service!!)

Your symptoms "sound" very much like Celiac Disease.

It is often recommended that instead of continued testing, that a gluten free diet may determine celiac or an intolerance to gluten, buy diet response. But in your case, I would suggest the testing via endoscopy exam becaue of your cystopic colitis.

I hope that this makes sense to you. If not, please PM me if you choose.

You are on the right road, keep on trekkin. :)

Lisa

kara7 Rookie
kara7
Posted
  • Author

Thanks for your replies I am scheduled for an (EGD) or otherwise known as an upper endscopy. Any tips for doing the Trylite prep. I am freaking out about the prep. When I had my first prep I did the Visicol prep (pills) and that was a nightmare.

Thanks

Kara

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