One Year--Question
 

I have experienced various neurological symptoms for a few years: left temple ache, left arm pain, right leg weakness, fatigue, etc. During that time, I was evaluated for various potential causes.

One diagnosis that I received was eosinophilic esophagitis. Another diagnosis that I had been aware of was: various environmental allergies (primarily dust and ragweed)--and mild food allergies.

However, no possible cause of the neurological symptoms was identified until 2007 when Enterolab identified two genes predisposing me to gluten sensitivity (DQI and DQ8). I tried a gluten-free diet for about one year, but it was not a strict diet. About six weeks ago, I started a strict diet.

My concern now is that I read that gluten induced neurological issues cannot be reversed if a person has had them for over one year. I am wondering if anyone has any thoughts on this. This data came from a neurological journal (March, 2010). If this is the case, does it even make sense to try a gluten free diet?

I don't think that is true though. I think there is a lot it depends on. I have heard many say their neuropathic symptoms disappeared after going gluten free. Sometimes when glutened, they will return with a vengeance, only to disappear after the glutening ends.

Have you had your B12 level checked? Even if you go gluten free, if your B12level is too low, the neuropathy may not go away. Gluten intolerance causes many issues..the gluten is the beginning, the other symptoms are often branches to the original problem. Many friends have no neuropathy symptoms...I on the other hand have sensory small fiber neuropathy and have been gluten free for nearly 10 yrs. I didn't know about B12 though until 6 yrs ago.

I must say though, you can not be a little gluten free, or almost gluten free, this is an all or nothing lifestyle. If you have been strict for 6 weeks, it may still take more time to feel lots better. Everyone heals on their own time frame.

I agree with Deb. It is simply not true that people can't improve if symptoms are longer than one year in duration. I know people with peripheral neuropathy, ataxia, and seizures of much longer duration who have improved on a gluten free diet.

What I have read is that it can take up to a year to see signs of improvement because nerves heal slowly, although in some cases there can certainly be improvement sooner. In some cases, some damage may be permanent and then the hope is to halt the progression of an otherwise progressive disease.

You might want to take a look at a variety of articles filed in The Gluten File under Marios Hadjivasiliou, Peripheral Neuropathy, Ataxia, Seizures. Results of a gluten free diet are mixed, but there are definitely many case reports of people who improve, sometimes after a lifetime of symptoms. This includes some people going from wheelchair to walking.

Have hope! Only time will tell if you will improve, and remember, you need to commit to a very strict gf diet. Even small infractions can keep the immune system activated. Also, since neurological symptoms related to gluten sensitivity can be caused by both immunological mechanism and nutritional deficiency, be sure to give consideration to the possibility of nutritional deficiency. Especially B12 deficiency, but there are others you will see listed under the Latov article on the neuropathy page.