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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
      Welcome to the forum, @JohannesW85! Your physician gave you bad advice in telling you to avoid gluten until the hospital calls you. Reducing gluten intake will invalidate celiac disease blood antibody testing but it will also invalidate the gastroscopy/biopsy if there is significant time involved between removing gluten and when the procedure is scheduled. The endoscopy/biopsy serves the purpose of checking for the damage caused to the lining of the small bowel caused by the inflammation inherent in celiac disease to that section of the intestines. If you remove gluten ahead of the procedure for a period of weeks or months, there may be enough healing of the intestinal lining to prevent detection of damage. Gluten is hidden in many manufactured food products that you would never expect to find it in. It can also be found in medications, health supplements and oral hygiene products. It is easy to eat a lower gluten diet by cutting out major sources such as bread and pasta but much more difficult to achieve a truly gluten free state. There is significant learning curve involved. Current recommendations for the "gluten challenge" in preparing for celiac disease testing are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a period of at least 2 weeks. But I would certainly extend that time period to make sure the testing is valid. You might also be dealing with NCGS (Non Celiac Gluten Sensitivity) rather than Celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.
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