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My Story


Peanutpie

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Peanutpie Newbie

So I've been having stomach for years. At least 10 years. I'm horribly gassy all the time and go between diarrhea and constipation every day. I'm always bloated and have bad abdominal pains. I have very greasy stools and very smelly. I can't gain any weight and am always exhausted. I also get horizontal lines on my finger nails from time to time which I've been told is a vitamin deficiency.

In 2006 I went gluten-free while nursing my youngest child because she had reflux and my symptoms cleared up a lot. At the time I didn't stop to think Gluten was giving me problems and when I was done nursing started my regular diet.

In 2008 I was hospitalized from my regular doctor and had an abdominal CT done because of bad pain and chronic diarrhea. It showed nothing.

My doctor refused to do any blood tests and said that he wouldn't do a scope to check to celiac. He kept telling me it was IBS and I had to live with it.

In April of this year I started having gi bleeding and was referred to a general surgeon for a scope. They found polyps and took them off but because I was seeing a general surgeon he didn't check celiac. He didn't go beyond my stomach. I have severe reflux too. I've been anemic for over a year (my hemoglobin hanging out at an 11 for over a year)

The general surgeon said he thought I should see a GI doctor because I was beyond what he could help with.

SO yesterday I saw a GI doctor. He listened to everything I had to say and said off of the top of his head I either had A) Celiac or B) IBS. He made it known that because of being a woman and 27 that the IBS was much more likely but he ran a celiac blood panel yesterday (they took 3 vials of blood) Because I had an endoscopy already this year if my blood tests are positive? I can't get another scope this year unless it's an emergency, my insurance won't cover it.

He put me on an anti spasm medication and told me even if the celiac test came back normal that going Gluten Free helps a lot of people with IBS. He kept telling me it was IBS and said that 'if it's celiac I'll sit down with you because we'll have a lot to talk about'

I'll know in a week what my blood tests say but I've decided either way I'll go gluten-free, because it can't hurt and maybe I'll feel better too.

So that's where I am. Researching gluten-free stuff and waiting for the results of my blood tests


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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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