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New to Forum, New to gluten-free Diet, Scary Experience

puffyclouds

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puffyclouds Newbie
puffyclouds
Posted

Hello all!

I have been on a gluten free diet at the suggestion of my doctor for about 4.5 weeks now. Gluten intolerance is in my family on one side and celiac disease is on the other. I had the bloodwork done a month ago and went in to discuss my results yesterday. My celiac panel is negative but my doctor wants me to remain on the diet due to improvements in my health and mental sharpness since I have started. He also ran extensive basic bloodwork and it was normal and I had a CT Scan of my abdomen last month for an unrelated issue and all organs looked good.

I just had a scary experience tonight though. I passed dark brown bubbles of oil with a bowel movement after feeling bloated, nauseous and uncomfortable after eating a light snack this afternoon. I then had urgency an hour or two later, used the restroom and had a lighter colored, slightly loose stool with big blobs of dark brown oil floating in the bowl.

I called my doctor's emergency line and they told me not to worry, I just didn't absorb some fat. This happened in May, but it wasn't as dramatic, the oil was light colored and the droplets weren't as big. In Feb 2015, I stopped producing bile briefly and had a white bowel movement that sent me to the ER. All bloodwork and CT scan was normal.

So, I'm being told not to worry after having these really bizarre escapades lately. Could my intestines be healing? When I googled I saw that this could be due to celiac disease and my doctor said that my nagative blood panel doesn't convince him of anything...

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kareng Grand Master
kareng
Posted

It could be anything.  It isn't what you just ate.  It can take a day or two for food to go from one end to another.  

Changes in diet can cause issues.  Even a change from day to day.  

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. It sounds like you may have gotten glutened. You may want to look at what you have eaten over the last 3 or 4 days since it can take a couple days antibodies to build up and cause symptoms for some of us.

Have you read the Newbie thread at the top of the Coping secition? If you haven't you should do so as there is much we need to do to keep ourselves safe.

Since you are not eating gluten more celiac related testing can't be done but do you know what blood tests were run including whether a total IGA was done? Some doctors think we have to be positive on all tests when we may only be positive on one. Did your doctor refer you to a GI doctor before telling you to get on the diet? If not he should have.

cyclinglady Grand Master
cyclinglady
Posted

I agree with Ravenwoodglass.  Get copies of your "celiac panel" results.  You only need one positive in order to be referred to a GI.  My doctor ran the complete panel.  I tested positive to only one, yet my biopsies revealed moderate to severe damage.  A fluke?  No, even in follow up testing, I test positive to only the DGP IGA test.  

I know you have been gluten free for a month, but you might consider a challenge (going back on gluten) and seeing a celiac savvy doctor if you did NOT get the complete tests.  

 

puffyclouds Newbie
puffyclouds
Posted
  • Author

Thanks guys. He gave me a print out. What he had tested was "Immunoglobulin A, Qn, Serum", t-"Transglutaminase (tTG) IgA" and "Endomysial Antibody IgA". I don't understand the numbers but the last one says negative and he said the rest were negative.

I'm so worried after yesterday. I'm afraid to go to the bathroom even though the Dr. on call said it was most likely something I ate....I'm just not sure.

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
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      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
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    • JoJo0611
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      By JoJo0611 · Posted

      Thank you. 
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      Inconclusive results

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