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clutchlee

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clutchlee Rookie
clutchlee
Posted

Have not had a diagnosis.  But I need help sorting through my symptoms.  Thanks to cyclinglady and GFinDC for your previous responses.

For those on the forum who have a a Celiac Diagnosis, I have questions about your symptoms prior to diagnosis.  Did your symptoms fluctuate on a daily basis or were they pretty constant?  Did just the act of eating and digestion make them worse, even without ingesting gluten?

My symptoms currently include fatigue, insomnia, burning mouth syndrome, blurry vision, some loose stools and some gas.  The blurry vision and burning mouth are brought on by eating/digestion and continue throughout the day worsened by more eating.  Symptoms continue even as I try to eliminate gluten.

Thanks so much for your feedback!

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cyclinglady Grand Master
cyclinglady
Posted

I have celiac disease.  From what I have learned through research is that symptoms can wax or wane.  There is no consistency at all.  This applies to me personally.  At the time of my diagnosis, I was just anemic.  I had always been anemic which was attributed to my being a woman and Thalaseemia (genetic anemia), but during an initial consult to the GI for a routine colonoscopy (over 50), he looked at my chart and told me that he thought I had celiac disease.  I was shocked.  I had no intestinal issues.  There was no direct correlation of symptoms when I consumed gluten.  Many people have no symptoms at all!  

Since then I have been glutened twice.  Symptoms have drastically changed.  Now I get intestinal issues.  The first time severe and the second not so severe.  In both cases, I have no idea what caused the glutening, but my current GI did measure my antibodies and they were again elevated.  Those symptoms took three months to resolve.  

The best thing is to ask your MD to give order a celiac blood test, but you have to be eating gluten daily for the tests to work.  Go gluten free?  I would NOT recommend it until you have been tested.  

I wish you well.  

 

clutchlee Rookie
clutchlee
Posted
  • Author

Thank you cycling lady.  Going to MD next week.  Are the Celiac Blood tests and those described in the Univ. of Chicago website (you suggested) for Gluten Intolerance, the same??

Thanks so very much!

cyclinglady Grand Master
cyclinglady
Posted

Yes.  If possible, ask for the complete panel and not just the screening TTG.  Why?  You could be an odd duck like me who tests negative to the TTG.  

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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

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      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.
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    • JoJo0611
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      Thank you. 
    • deanna1ynne
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