Hi Mary,
Has your doctor tested your B12 level, and do you know what the result was?
Celiac neuropathy can be caused by both immunological and nutritional factors.
Quote:
"But the two things which are relevant to CD are nutrition and immunity. People with CD have nutritional deficits because of malabsorption; common causes of neuropathy are B12 deficiency, B1 deficiency, B6 deficiency, and Vitamin E deficiency. Neuropathies are also commonly caused by the immune system through autoimmune mechanisims."..."Latov commented that 20-25% of people with CD might have neuropathy."
Celiac Disease and Peripheral Neuropathy, Norman Latov, MD, PHD 2002
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Has your doctor run follow up antibody tests on you to see whether your antigliadin and celiac related antibodies are negative? Hidden gluten can sneak up on even the most vigilant.
You might also want to consider other foods as being causative, particularly cow's milk, but also yeast, legumes, etc. The MS-Direct site uses a dietary approach to treat MS, removing gluten, but these other foods, too. I'm not suggesting you have MS, just that they use a dietary approach for treating the neuropathy of "MS" with some good results in many people. (see the MS page of The Gluten File for the link or google it)
If you are sure you are 100% gluten free (with negative antigliadin antibodies), you might consider removing these other foods, too. There is not as much in the medical literature in regard to cow's milk and PN as there is about gluten and PN, but some people do appear to benefit from removing additional foods. You could also do IgG food allergy testing, and remove any foods you are positive to. IgG food allergy testing is somewhat controversial, but we've seen the neurological problems gluten can cause even in the absence of Celiac Disease. Why not other foods? (see food allergy page of TGF)
Also be sure you don't have any underlying nutritional deficiencies. I'd take a multivitamin, B-complex, and 1000mg of B12 for sure to cover those nutritional bases. There are other supplements that may be useful to PN and ataxia patients, too, like vitamin E, CoQ10. If you check the individual pages for PN and ataxia in The Gluten File, you will probably find mention of them.
Do you take any prescription drugs, and are they known to cause neuropathy? I think this first article mentions which drugs can cause neuropathy. You might find the other articles helpful, too.
Other food intolerance, nutritional deficiency, and medications are all things to be considered (and there are more things, too). If you are new to BT, there is also a Peripheral Neuropathy board and many of them use a nutritional regimen with varied success.
Cara