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Unclear Diagnosis

edie

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edie Newbie
edie
Posted

I am 43 year old mother,runner, active athletic woman that has been plagued with stomach issues since having my gallbladder out, a bout with horrible stomach flu and mono that landed me in the hosptial last year. I have had abdominal pain, constant fullness and bloating, bowel issues with terrible pain for the last 3 years. I have been prescribed the usual nexium, zantact, Levsin and antibiotics with no relief. My initial endoscopy 3 yrs ago was negative for celiac ( several months after symtpms started) but I had many many areas of micro erosions in my stomach into my small intestines. Tiny infammation areas they thought were related to Ibuprophen.

The latest is a diagnosis of IBS...of course.

3 year later, still symptomatic, colonoscopy results normal, blood test normal ( neg. for celiac) , scheduled for endoscopy in 2 days as my new doctor said many people test negative on blood for celiac and positive on biospy. She says I "look celiac"...whatever that mean. I am very thin, trouble keeping weight on and am NEVER hungry.

Is it possible to be celiac and have so many negative tests? Is it worth trying gluten free....I have tried everything else. My entire family has autoimmune disease ( thyroid, diabetes type I, vitiligo, etc ).

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gfb1 Rookie
gfb1
Posted
I am 43 year old mother,runner, active athletic woman that has been plagued with stomach issues since having my gallbladder out, a bout with horrible stomach flu and mono that landed me in the hosptial last year. I have had abdominal pain, constant fullness and bloating, bowel issues with terrible pain for the last 3 years. I have been prescribed the usual nexium, zantact, Levsin and antibiotics with no relief. My initial endoscopy 3 yrs ago was negative for celiac ( several months after symtpms started) but I had many many areas of micro erosions in my stomach into my small intestines. Tiny infammation areas they thought were related to Ibuprophen.

The latest is a diagnosis of IBS...of course.

3 year later, still symptomatic, colonoscopy results normal, blood test normal ( neg. for celiac) , scheduled for endoscopy in 2 days as my new doctor said many people test negative on blood for celiac and positive on biospy. She says I "look celiac"...whatever that mean. I am very thin, trouble keeping weight on and am NEVER hungry.

Is it possible to be celiac and have so many negative tests? Is it worth trying gluten free....I have tried everything else. My entire family has autoimmune disease ( thyroid, diabetes type I, vitiligo, etc ).

trying a gluten-free diet costs nothing.

it is absolutely possible to have negative tests and still be a celiac. this is (mostly) due to the high variability in the age of onset and response/severity to gluten at that time. i strongly suspect that in many people much of the celiac symptomology occurs long before there is sufficient and consistent intestinal damage to provide a positive blood test. your body responds much more quickly (and locally) than the mechanisms tested for in the blood.

however... sometimes a negative is really a negative (or a cigar...).

lizard00 Enthusiast
lizard00
Posted
trying a gluten-free diet costs nothing.

it is absolutely possible to have negative tests and still be a celiac. this is (mostly) due to the high variability in the age of onset and response/severity to gluten at that time. i strongly suspect that in many people much of the celiac symptomology occurs long before there is sufficient and consistent intestinal damage to provide a positive blood test. your body responds much more quickly (and locally) than the mechanisms tested for in the blood.

however... sometimes a negative is really a negative (or a cigar...).

I believe that, too. I think that is why the average time it takes to be diagnosed is around 11 years, simply because our bodies are telling us something is wrong loooong before it can actually be detected through the testing available. I believe this was my case, only 2 years of damage, combined with a low IgA, pretty much made it impossible to detect through testing.

My doctor does treat me as a celiac patient, and we both believe I have celiac.

Once you get your EGD, give the diet a try. You have nothing to lose, it's not an unhealthy diet, and if it works, you can control how you feel by diet, and don't have to be reliant on drugs.

Wish you the best!

edie Newbie
edie
Posted
  • Author

I believe that my wonderful gastroenterologist feels this is Celiac as she is repeating everything I had done 3 years ago and after my colonoscopy she DID recommend I try a Gluten Free diet after the small intestine biopsy Friday. She says with my family hx, symptoms, sudden onset , and apparently the way I look she feels it is worth a shot. So, I guess I will give a try starting Saturday. I just find it hard to believe that I all of a sudden have developed IBS. But, then again I think that most of the biopsies and blood test are highly sensitive...very confusing! Thanks.

lizard00 Enthusiast
lizard00
Posted

Welcome to the forum, by the way! :)

Getting started with the diet can be tricky, so feel free to ask away!!

mommida Enthusiast
mommida
Posted

Many people here are self diagnosed after negative test results. I would try the diet no matter what the test results are.

If you are suffering from one or more food intloerances, a food journal can really help you figure out what's going on.

Welcome to the board!

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