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Forensicmom

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Forensicmom Newbie

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
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
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

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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    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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