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Forensicmom

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Forensicmom Newbie
Forensicmom
Posted

I have had digestive issues for a few years and my dr's have tried different things. None of them considered Celiac's until I asked about it. They did the traditional blood test, which was negative. They also took a few biopsies during an upper endoscopy a few weeks ago that came back negative as well. I mentioned to my doctor that when I'm feeling bad (with the nausea) that the only thing that makes me stomach feel better (most of the time) is crackers, bread, etc. She said that that's a clear indicator that gluten is NOT the problem. She said that if it was, then I would react to it, not feel better.

Well, I've read on a few websites that gluten doesn't react right away and can take 24 hours or more, which is why it's hard to diagnose. They said that it initially makes you feel better but it's a delayed reaction.

Can anyone tell me if this is true? I also read that there are NO accurate tests for this and that the ONLY way to know for sure is to go TOTALLY gluten free for at least 3 months.

I do not want to try a drastic diet if I'm not even sure that gluten is the problem. It's very confusing, which is made worse since I'm getting opposite information then what my doctor is telling me.

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Lisa Mentor
Lisa
Posted
I have had digestive issues for a few years and my dr's have tried different things. None of them considered Celiac's until I asked about it. They did the traditional blood test, which was negative. They also took a few biopsies during an upper endoscopy a few weeks ago that came back negative as well. I mentioned to my doctor that when I'm feeling bad (with the nausea) that the only thing that makes me stomach feel better (most of the time) is crackers, bread, etc. She said that that's a clear indicator that gluten is NOT the problem. She said that if it was, then I would react to it, not feel better.

Well, I've read on a few websites that gluten doesn't react right away and can take 24 hours or more, which is why it's hard to diagnose. They said that it initially makes you feel better but it's a delayed reaction.

Can anyone tell me if this is true? I also read that there are NO accurate tests for this and that the ONLY way to know for sure is to go TOTALLY gluten free for at least 3 months.

I do not want to try a drastic diet if I'm not even sure that gluten is the problem. It's very confusing, which is made worse since I'm getting opposite information then what my doctor is telling me.

Yes, it is true that the available diagnostic means is not as accurate as we would like at this time. There can be false negatives with the blood test as well as the endoscopy/biopsy exams. Not all roads lead to Celiac, but it's wise to be tested due to years of digestive issues.

Reaction time can vary from person to person. But, it's more common for a reations to be delayed (such as 24 hours) when a person has been on the diet for some time and some healing has taken place.

Can you post the blood test that you were given

I would suggest a trial diet. Try it for several weeks and be as accurate as possible. You can then introduce gluten and check your reaction.

Mike M Rookie
Mike M
Posted
Well, I've read on a few websites that gluten doesn't react right away and can take 24 hours or more, which is why it's hard to diagnose. They said that it initially makes you feel better but it's a delayed reaction.

Can anyone tell me if this is true?

I agree with Momma Goose's response. May be time for a "trial" gluten free diet. Also, in my opinion, you are a prime candidate for having a stool analysis for gluten intolerance done. A company that is called Enterolab does this. Some posters on here are not fans of Enterolab. I do believe they can help in many cases, especially like your situation. As far as making you feel better after eating gluten? This was how it was for me in the very end before being diagnosed. Sometimes I would be so sick I could not eat for 3 or 4 days at a time. When I finally would eat something, the only thing I wanted was regular (wheat) spaghetti with ketchup on it (gross huh?) and I felt much better for a day or so and then back to sick.....It was a vicious cycle. Hope this helps, All the best, Mike

Forensicmom Newbie
Forensicmom
Posted
  • Author

Thanks so much for responding. Digestive issues can be a very frustrating thing and it's nice to have other people to talk to about this.

My only blood test for Celiac's was done (1-16-09) and it says:

IGA, serum 212

Gliadin AB (IGA) >3

Tissue Transgluta,minase AB IGA >3

I have NO idea what that means but the dr told me they were normal. The biopsy results were also normal, according to the GI doctor, but I haven't seen the actual results. The only things that showed up in my blood that weren't in the normal range were: Ferritin 7, Hemoglobin 11.2, Hematocrit 32.6

I started taking Nexium 2 weeks ago. Can anyone tell me whether I should give this a few more weeks to see if it works or should I just start watching the gluten now? I'm afraid to try too many things at once and then not be able to tell whether it's the lack of gluten or the acid meds that are working.

Going gluten free scares me a bunch since there's gluten in just about everything and the thought of giving up all my favorite foods and drinks is not appealing to me, although I do want to feel better. Is there any easy way to do a trial diet?

How do you deal with gluten when you go out? What about parties, functions, etc? Are you able to eat out?

Oh, I have heard about the Enterolab tab from another site but have heard that it's pretty expensive and most doctor's won't send you for it. Would it still be necessary if you go on the diet instead?

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