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Possible Celiac Disease

milo2007
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milo2007 Apprentice
milo2007
Posted

Good evening. I have recently lost 28 lbs in weight over a four month period. My hair is brittle and falling out. Had bloods apparently all within range. Had endoscopy and colonoscopy. Both clear. Small bowel capsule noticed some veins and cysts that could possibly be causing my bleeding. My stools are semi formed and not pleasant. This has been going on for a short while. I am always being diagnosed with anxiety. I also had been diagnosed with a mass on my chest which seems to be a thymic cyst! Also during an MRI I have been diagnosed with kidney cysts, liver cysts and ovarian cyst… lots of cysts going on. What can you do next in relation to excluding Celiac ?

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trents Grand Master
trents
Posted

Welcome to the forum, @milo2007!

I have a few questions for clarity's sake.

You say you have had "bloods" done. Do you refer to the specific antibody tests that are run to detect celiac disease or are you referring to general common blood work like a CBC/CMP?

When you had the endoscopy done, did they biopsy the small bowel lining to microscopically check for the damage to the villous lining of the small bowel characteristic of celiac disease? This damage is not always visible to the eye during scoping.

milo2007 Apprentice
milo2007
Posted
  • Author

Hi had I believe the antibody tests and they were within range. Had an endoscopy and biopsy taken but all clear. I did ask if there was a possibility of disease further in the intestines. Gastroenterologist said nothing is guaranteed apart from death and taxes!

trents Grand Master
trents
Posted
(edited)

By any chance had you already embarked on a gluten free diet or at least were seriously cutting back on gluten before the bloods were taken and the endoscopy/biopsy was done?

Edited by trents
milo2007 Apprentice
milo2007
Posted
  • Author

I had not eaten properly for a few months due to a sudden lack of appetite. This started around November and the endoscopy was done in the February. The bloods were done twice. Once in December and once in June. 

trents Grand Master
trents
Posted

The reason I asked is because eliminating or even seriously restricting gluten intake for weeks or months before testing will invalidate the tests due to rebound healing of the gut mucosa.

milo2007 Apprentice
milo2007
Posted
  • Author

Yes I did say this time that I had quit gluten for five days but he said that was fine. My fear is I have damaged my intestine permanently. 

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trents Grand Master
trents
Posted
(edited)

Yeah, 5 days off gluten wouldn't have much if any effect on the testing. It does not appear you have celiac disease if the biopsy was negative, meaning no damage to the small bowel mucosa. It would seem your health issues are due to something else. 

Edited by trents

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