Lee’s Symptoms and Diagnosis

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My gastroenterologist: Dr. Carol Semrad, University of Chicago Celiac Center

Symptoms prior to diagnosis: Weight gain, swelling, numbness, neurological tingling with bursts of electrical-shock style pain—particularly in my limbs; chronic diarrhea with leakage, reoccurring mouth sores, back pain, acute body aches, fatigue, muscle weakness (couldn’t carry even the most lightweight items), BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (not yet sure is white cell count has anything to do with gluten). My feet became so bad, I could hardly walk. For what seemed forever, the only shoes I could wear were Crocs.

Malabsorption: Vitamin D deficiency (almost no D in my body despite eating vitamin D rich foods and taking a quality multi-vitamin each day).

Final diagnosis (after having been misdiagnosed before going to University of Chicago): Gluten Intolerant with double HLA-DQ6.

I do not have celiac disease. However, the more I learn, the more I question if my particular form of gluten-intolerance causes neurological issues rather than upper intestinal issues, thereby acting just like celiac disease, but attacking neurologically rather than intestinally. We’re still studying this, and I am allowing University of Chicago to use for research.

Note: At one point prior to diagnosis and going to the University of Chicago, I also had skin lesions. They popped up out of nowhere—open slits. They looked horrible but were not at all painful or itchy. I went to three physicians (dermatologist, rheumatologist and internist). None of the doctors could tell me what caused the lesions. I was told it was not dermatitis herpetiformis, (which can be common among Celiac patients), and so, they did not order a biopsy. The break-outs cleared up about six months after going gluten free.

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

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