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My, Oh My, Peripheral Neuropathy

Posted by jebby, 18 September 2013 · 3,230 views

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.”

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.

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my son is 9. he was diagnosed in May/June this year on a fluke.. after having a stomach bug. He also has psoriatic arthritis and was taking meloxican which we thought was the reason for his pain. after a blood test and biopsy confirming celiacs.. He also has learning issues.. short term memory, working memory and ot issues.. that were the first to be discovered. After finding out about celiacs we went gluten-free .. however he started having tremors.. which are growing worse and his muscle pain all over is on hold due to he fell  in gym and broke his elbow. He does not complain and always says Good when asked how he is.. I have never heard of gluten affecting people this way. I thought going gluten-free would solve our issues .and now i have to worry about trace gluten and want to stop these tremors.Do you have any advice at all and is this something that can go away.. DO i have to stay away from all gluten-free boxed foods and how on earth can you when your 9 year old is in school and birthday parties and snacks ect...? anything would help

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Hi Susan,
I am so sorry to hear about all of the suffering that your little boy has experienced. It seems like in most cases the biggest source of cross contamination is when people keep a shared home and kitchen? Is your entire house gluten-free? If it isn't, it am help to take all gluten out of the home. I am just about the most Type A person in the world, and although I thought I was doing my best to be gluten-free in my home and keep all of my stuff separate, I failed miserably.
As for gluten-free foods and snacks, it takes time to figure of what will work for your family. I have 4 kids under 8 and they snack on fruits, veggies, yogurt, raisins and dried fruits, popcorn, cheese sticks, etc. I do a bunch of baking in large batches and freeze the leftovers so we can get them out easily, I.e. cookies and muffins. It gets easier with time.....I wish that I could give you more advice. I have a lot of friends whose kids have food allergies, and most of them pack their kids their own food to bring to birthday parties and school events, etc.
J
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Having suffered severe neuropathy and burning nerve pain during the 3 years prior to my diagnosis, I had the same battery of testing you did. EMGs on legs and arms (that is not fun), a brain MRI and a spinal MRI, testing for lupus, diabetes

and repeatedly for Lyme,I was told I probably had fibromyalgia and I should take Neurontin plus nortryptiline  or lyrica and learn to live with it.

I refused.

 

Once diagnosed,my GI doctor consulted several Neurologists

on my behalf

but I had read that some 16% of celiacs develop small fiber neuropathy (which is not detectable

with EMGs) and that possibly, in time, the sizzling pain

 would resolve.

However, it might not --they warned him--and I should start accepting that idea.

After 2 years, I still had it but it was less intense and I could feel my feet and back

again. One day, I realized it was tamped down quite a bit. :)

 

Now it is less noticeable and I no longer have the intense burning and tingling

every moment of every day but I notice it does "amp up"

if I am glutened.That's when I am reminded of just how horrid it had once been

and I am grateful it has subsided.With MS in the family, I was pretty sure I was headed that way, but I am grateful this is not the case.

 

Someday, I hope for it to be entirely resolved.

Thanks for sharing your experiences, Jess. While I am saddened to hear you suffered so much, it gives credence to how many of us are told it's X Y or Z, when in reality, it is neurological ramifications of C D

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Hi Irish Heart, It truly was the development of the neuropathy that made me decide to start to write about all of this. Thanks for sharing your story too. I am so glad that you opted to not take medication for fibromyalgia and that you finally were able to get to the root cause of all of your problems (Celiac).

I have to throughly review the obstetric records of all of my patients' mothers (I take care of preemies) and in doing so, I am seeing more and more young women with diagnoses of fibromyalgia, migraines, unspecified neuropathies, etc. I suspect that gluten may be the culprit in many cases. And these are young, young women, mostly in their twenties.

Thanks for taking the time to stop by and comment!

Jess

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I suspect you are correct!. 

It's possible  their preemies are preemies because of it too. I hate to think of the

downward spiral these women may face. sigh.

Maybe you can slip them a celiac pamphlet? None of their doctors are "getting it".

 

Thanks for sharing so much with us!

Take care,

Ginny

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