The Patient Celiac

I spent a good chunk of last Christmas Eve in an MRI scanner, getting my spine analyzed for the white matter lesions of multiple sclerosis (MS). Mike, the MRI technician, piped George Winston’s “December” celiac disease through my MRI headphones, but the music did little to drown out the loud hammering sounds of the MRI and the thoughts that were racing in my head. I prayed and bargained while I was in the scanner, with thoughts such as, “If I do have MS, please let it be relapsing-remitting and not primary progressive,” and, “If I am going to become disabled from MS, please let it happen after my 4 babies have been raised and are out of the house.”

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I developed a peripheral neuropathy (nerve damage) last fall, about 2 and a half years after going gluten free for my Celiac Disease diagnosis. In September 2012 I felt better than I had in quite a while and was training for my first half marathon after having Claire in March. Then, the first week of October, I had a pretty bad “glutening” episode (thanks to Trader Joe’s) which took me quite a while to bounce back from. Two weeks later, while visiting family in Boston, I developed persistent numbness and tingling in my hands, feet, tongue, and right upper lip, followed by extreme fatigue and difficulty concentrating/lapses in my short term memory. I went to see a neurologist after my symptoms had persisted for about a week and a half. My full neurologic exam at this point was unremarkable. My brain MRI was normal. I was evaluated for Lyme Disease, lupus, diabetes, sarcoidosis, and several other autoimmune and vascular diseases. My Vitamin B12 and copper levels were normal. My thyroid function was assessed (I have Hashimoto’s Disease and take daily levothyroxine) and everything thyroid-wise was normal as well. My neurologist told me that based on recent research, as well as in his experience, Celiac Disease is the third most common cause of the development of a peripheral neuropathy, behind diabetes and alcoholism. He told me that if my neuropathy was indeed Celiac-related, that it should resolve in 3-6 weeks. And it did. I was out running one day and I finally felt like my feet were back to normal after weeks of running with numb feet (which, looking back, probably wasn't the smartest thing to do!)

We took all gluten out of our home at this point to avoid exposing me to any inadvertent gluten cross-contamination. I stopped eating gluten-free processed foods entirely. But then Thanksgiving came, and I know that I got a hit of gluten somewhere, and about one week later my neuropathy returned to me. I was in the middle of watching my daughter perform in a Christmas ballet routine with Martina McBride and I had a sudden onset of numbness in my hands, feet, tongue, and upper right lip. Again, the symptoms lasted for days which turned into weeks. I returned to my neurologist and he ordered the rest of the testing for multiple sclerosis: a retinal exam to look for optic nerve thinning, visual evoked potentials, and the Christmas Eve spinal MRI, all of which were normal. The numbness and tingling slowly resolved and were gone by New Year's. I was grateful to not have MS.

Since December, I have had the neuropathy symptoms return only twice, once in January and once in July. They have both occurred after traveling, the only time that I am really ever taken out of my gluten free home (aka safe haven) and been exposed to cross-contamination. Fortunately, for reasons that are still unclear to me, my neuropathy symptoms lasted just days, instead of weeks, these last two times.

I started this blog last fall as a way of coping with my new neurologic symptoms from Celiac Disease. I had truly under-appreciated the effects that small amounts of gluten cross-contamination could have on my body until I developed the peripheral neuropathy. Although I did write about the neurologic effects of gluten last fall (see link), I was not prepared to share my personal experience until now.

In conclusion, many patients with Celiac Disease will go on to develop peripheral neuropathies, even while on a gluten free diet. If you have Celiac Disease or non celiac gluten sensitivity and develop symptoms of a possible peripheral neuropathy, please be evaluated by a neurologist to make sure that something treatable, such as a vitamin deficiency or Lyme Disease, is not going on.

For more information on Celiac Disease and peripheral neuropathy, please check out the following links:

1. Peripheral Neuropathy. National Foundation for Celiac Awareness. Accessed 9/10/2013.

2. Celiac Neuropathy. The University of Chicago Celiac Disease Newsletter. Spring 2010. Accessed 9/10/2013.

3. Chin, R. and Latov, N. Peripheral Neuropathy and Celiac Disease. Current Treatment Opinions in Neurology. 2005; 7: 43-48.