I stopped eating gluten but I am still sick – Gluten Ataxia

People with Celiac disease often stop eating gluten and expect to start feeling better. For most, this is true. For some however, most of their symptoms clear up but there are still some residual last effects such as dizziness, disorientation, balance issues, memory/concentration issues, exhaustion, and problems with motor skills to varying degrees. Even after long term adherence to a strict gluten free diet, all of their symptoms did not clear up even though their digestive system felt incredible.

The answer may be gluten ataxia although it may not be one that people want to hear. Gluten ataxia is characterized by difficulty walking, frequent falls, difficulty judging distance and position, visual disturbances, and tremors to name a few. Gluten ataxia targets the cerebellum instead of the intestines like Celiac disease or the skin like dermatitis herpetiformis. Doctors have now found that an increasing number of Celiac patients develop neurological complications as well. A very technical though thorough article is here.

I am 100% gluten-free and I am strictly compliant to the diet but I have noticed that I have problems with stairs (I cannot carry anything that may shift my center of balance), I tend to loose balance while standing still, I have a difficult time with memory (more so than before I got sick), my hands and feet twitch and spasm involuntarily, and I am constantly exhausted. I enjoying knowing I am not crazy but I feel devastated to find out there is nothing I can do to “make myself better.”

I am not 100% sure I have gluten ataxia because doctors are not really well educated about it, and I tend to feel a bit crazy bringing it up. Besides, there is nothing they can do to help me that I cannot do for myself.

Living Without had a great article that brought this to light for me in their Feb/March 2011 issue. The link is here.

If you read this, please share your stories or experiences.


1 Comment (+add yours?)

  1. Trackback: I stopped eating gluten but I am still sick – Gluten Ataxia Dermatitis

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