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Negative Biopsy But Undigested Food In My Stomach....


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#1 lovethosecheesesteaks

 
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Posted 09 April 2008 - 01:07 PM

Hi all.

I just came back from my GI earlier today and we went over the results of my endoscopy and biopsy that was taken 2 weeks ago. The doctor said that my biopsy doesn't show celiac but he doesn't understand why I am not digesting food properly. The night before I ate pasta and pork chops and apparently all this was just sitting in my stomach.

I did take the gluten antibody blood test (IgA?) but unfortunately my GI didn't get the results because my primary's office either did not take the right test or never sent him the right test results.

So now I am going to do the gene test and an x-ray that is going to see how my digestive system is working (radioactive scrambled eggs yum!)

I know that the gene test is the definitive test for celiac because I've read that people can have negative biopsies and bloodwork. But has anyone here had a negative biopsy and but also been told that they are not digesting food properly?

This is something that has really been frustrating me for the past year and a half because a celiac/wheat intolerance diagnosis would explain the majority of health problems I've had my whole life. I've always had stomach problems when I was younger, I could only tolerate soy milk based formulas as an infant, I've had eczema on my hands and wrists, I've been getting bad headaches a lot lately, I have keratosis pilaris (chicken skin), bloated stomach, gas etc. And I've done a gluten free challenge for a month and felt like a million dollars afterwards. I just want to get these (hopefully last) tests done because I'm tired of feeling like a hypochondriac and my GI is telling me to stay on a regular gluten diet and I really don't want to.

Thanks in advance for any info or advice.
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#2 MDRB

 
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Posted 09 April 2008 - 03:47 PM

Hi,
I'm sorry to hear that you are having a hard time.
Testing is always tough, and often inaccurate. The gene testing is only definitive if you do not have the genes. If you don't have the genes then you can't develop celiac disease but may still have ann intolerance. If you do have the genes, then it doesn't mean that you will or have developed celiac disease, as something like a third of the population have the appropriate genes.
I guess the main indicator is if you feel better off the gluten, if you do then it is worth it, diagnosed or not.
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Gluten Free Since mid March 2008
As well as gluten I can't eat: cantaloupe, honeydew, dairy and most nuts and seeds. I also seem to have a problem with a lot of fruits and vegetables but only when they are raw.

#3 gfgypsyqueen

 
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Posted 10 April 2008 - 05:08 AM

You're having the same fun I had when I tried to get a diagnosis - except backwards! First I had the nasty radioactive eggs test. I had two of them. One checked my gallbladder - not functioning. The other was a gastric emptying test - awful eggs!!!! Turns out my stomach does not work either. The problem to be aware of is that they took out my gallbladder in hopes that it would more or less jump start my stomach. Did NOT work. No big deal since my gallbladder wasn't working anyway, but I am curious if my gallbladder would have been better after going gluten-free. Never will know.

The food sitting undigested in your stomach could be "Gastroparesis". That is what I have. There are books about the disease and what foods make it worse. I go for a few weeks feeling full and never really hungry. The medication option was Reglan. The longer you take it, the less effective it will be on you. Nice huh. The only med that works perfectly to make your stomach empty is not sold in the US. I found Food Enzymes are really helpful. I no longer take Reglan. I just take Food Enzymes and avoid problem foods.

During all the testing for everything I had a Celiac blood test done and was told it was negative. Then later after an exploratory scope the Dr said I was text book Celiac and took the biopsies. Sure enough the biopsies were positive.

Good luck on the Gastric emptying test. It really is not that bad- if you like eggs - and I don't! See if you can bring some music to listen to while they are doing the test (1 hr of not moving, I think)
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