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Confusing Results

ruthiewm

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ruthiewm Newbie
ruthiewm
Posted

I recently tested positive for celiac on the blood work and genetics test. I have had severe abdominal pain, red skin after ingesting gluten, anemia, fatigue and body aches. In addition, I had a reaction to an osteoporosis medication that I was given ( autioimmune sensorineural hearing loss) that can occur in patients with malabsorption. I went on a gluten-free diet for 6 weeks and felt great! On a return trip to the GI doctor he recommended the biopsies so I went back on gluten but I could not tolerate much due to the symptoms. The biopsies were negative. Now, the doctors cannot decide if I should be given the official diagnosis or not. Is this common? I have no intention of going back on gluten but would really like to know if I have celiac or gluten intolerance. I have read that it can take years to get a definite diagnosis. I do not not want more years of feeling awful. Is this a normal experience?

Thanks!

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Lisa Mentor
Lisa
Posted
I recently tested positive for celiac on the blood work and genetics test. I have had severe abdominal pain, red skin after ingesting gluten, anemia, fatigue and body aches. In addition, I had a reaction to an osteoporosis medication that I was given ( autioimmune sensorineural hearing loss) that can occur in patients with malabsorption. I went on a gluten-free diet for 6 weeks and felt great! On a return trip to the GI doctor he recommended the biopsies so I went back on gluten but I could not tolerate much due to the symptoms. The biopsies were negative. Now, the doctors cannot decide if I should be given the official diagnosis or not. Is this common? I have no intention of going back on gluten but would really like to know if I have celiac or gluten intolerance. I have read that it can take years to get a definite diagnosis. I do not not want more years of feeling awful. Is this a normal experience?

Thanks!

Welcome, you have found a great place here!

Your positive blood work, coupled with genetic testing confirms a diagnosis for Celiac Disease. Welcome to the Club.

Positive blood work and biopsies can rule Celiac in, BUT it cannot rule it out. Your have a long pasage way in your small intestines and often sampling can be hit or miss.

There are three ways to test for Celiac (currently)

1. Blood testing

2. Endoscopy/biopsy

3, Positive dietary results

....You do have an official diagnosis! Let you doctors know. ;)

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