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Gluten ataxia?

I'm not sure if this is the right forum to be in for this, but I am at wits end with being sick. I've had a very low immune system since I was little. I have suffered from constant migraines and often a sick stomach. I recently started having seizures. My neurologist has deemed them non-epileptic but says I have abnormal brain waves but they rarely catch them. I am currently on seizure medicine that has lessened the severity of them but I Am still having them. I have just recently been searching to find answers for myself and came across celiac disease. I was tested (the blood test) and it was negative. Then I came across gluten ataxia. Does anyone know how this is tested and any other information on it? I just want to get better. Although my doctor had never heard of gluten ataxia she supposedly looked it up and said the celiac test would have shown something for it. She recommended that I go ahead and try a gluten free diet that I could be intolerant. Any suggestions or comments would be greatly appreciated.
2 Responses
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi!
Well, if you have celiac disease, you will usually have a positive gluten blood test. Other than this you can opt for gluten free diet and see if it helps. Usually, if you have gluten ataxia, there will be some brain (cerebellar) damage, so MRI usually detects brain lesions. Epilepsy like symptoms are seen in individuals who have vitamin B 12 deficiency, have peripheral neuropathy due to diabetes, hypothyroidism, Lyme’s lupus, have neurosyphilis or Friedreich's Ataxia.  It can also be due to ear infections. Please discuss these possibilities with your doctor. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
4943237 tn?1428991095
I don't normally visit this forum but for some reason decided to do so today.  I have gluten ataxia.  This may or may not show up on the Celiac blood test, it all depends on whether or not you also have bowel damage and whether you react to the particular peptide of gluten they test for (gliadin).  There are 10 peptides of gluten by the way and most doctors don't know anything about this.

I also don't have cerebellar degeneration, I believe because I picked up my GA early enough, but I do have a lesion in my cerebellum and multiple lesions in the periventricular matter.

A gluten free diet can literally change your life.  I was heading for a wheelchair fast, couldn't speak properly, had lost the feeling in my whole body and was utterly miserable.  I was also in horrific pain.  With the change in diet most of these things have improved/resolved.  

There are a number of researchers putting out some good material on gluten ataxia and non celiac gluten sensitivity that you may want to look up.  Prof M Hadjivassiliou, (particularly his article "Gluten sensitivity, from gut to brain"), Frank Fasano and Dr Perlmutter.

Hope this is of some help.

Poppy
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