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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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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      Accuracy of testing concerns

      By trents · Posted

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