Sad and scared--tingling

[Pebbledash]

Tex,

Do you know anything about when peripheral neuropathy occurs post gluten-free diet? I never had symptoms pre-diagnosis of Celiacs and MC. Now, some 7 years after being gluten free, normalized antibodies, beautiful labs, it comes out of nowhere.

Did your neuropathy improve?

Thank you.

PS I note that University of Chicago has a dedicated Celiac center http://www.cureceliacdisease.org

I will try and get a phone appointment with them as there is scant information available.

[tex]

I don't think peripheral neuropathy has much to do with the GF diet. I think it mostly depends on the degree of malabsorption caused by gluten sensitivity and on how high our reserves of B-12, vitamin D, and magnesium were before the malabsorption begins. In other words, I think it depends primarily on when we begin to run critically low on those reserves and how low we get before we begin supplementing.

My peripheral neuropathy began (as best as I can recall) about 6 or 7 years after my symptoms began, which was about 2 or 3 years after I began the diet (but unfortunately I didn't realize we needed to supplement back then).

I started taking Metanx in August of 2009 (after I had already had a TIA in July of 2009) and my symptoms began to improve after a few months. I've taken Metanx or Methyl-Guard Plus ever since. My symptoms have never completely resolved, but they're much better now. Feeling is still pretty marginal in my feet, but I now have almost normal reflexes in my knees and ankles again. And my gait is much more normal. My fingers (primarily on my left hand) are sometimes/often/usually about half-numb, but I don't have any tingling. I was diagnosed with Parkinson's disease also in August of 2009 (because of all these symptoms), but I don't have Parkinson's.

Tex

[brandy]

Good news on the no MS. Have you read the WAhls book? The one I have is the Wahls Protocol. I think it is a good read even for those without MS. Dr. Wahls is the lady who was diagnosed with MS and was in rough shape but healed herself through diet. A forum member recommended the book to me.

[brandy]

Pebble have you taken the Thorne Methyl Guard Plus? I do not have the MTHFR gene (I was surprised). But the Thorne version of the B's helped me get rid of my tingling up and down my right arm. The Thorne version of the B's has versions of the B's that are uploaded by our body and utilized better. Not sure if that statement makes sense but I think you will get the jist.

[Pebbledash]

Pebble have you taken the Thorne Methyl Guard Plus? I do not have the MTHFR gene (I was surprised). But the Thorne version of the B's helped me get rid of my tingling up and down my right arm. The Thorne version of the B's has versions of the B's that are uploaded by our body and utilized better. Not sure if that statement makes sense but I think you will get the jist.

Thanks for the tip. At the moment I am taking run-of-the-mill B vitamins.

[Pebbledash]

Good news on the no MS. Have you read the WAhls book? The one I have is the Wahls Protocol. I think it is a good read even for those without MS. Dr. Wahls is the lady who was diagnosed with MS and was in rough shape but healed herself through diet. A forum member recommended the book to me.

I have not. But I will look into my diet.

Sadly, after doing so well on Budesonide, I am back to square one with my MS, with the added bonus of the paresthesia.

One thing I will do is stop drinking diet coke with aspartame. I'll give that a try.

I was kind of hoping that Budesonide might have been the cause, but, after being off it for several days, I think that is far-fetched. I also have Gilbert's syndrome--high bilirubin--and wonder if that might correlate at all with tingling.

When I started Budesonide, that was the best I felt in years. My CRP was, for the first time, normal. I felt completely normal. Now I am just back to survival mode. It is so sad to "taste" normality and have it taken away again so quickly.

I have made contact with the Center for Celiac Disease at U Chicago in the hope that they might reach out and guide me a little about the paresthesia/neuropathy and its possible correlation with Celiacs disease.

Thanks again for all the feedback. I appreciate it.

[Adelaide]

My Dad had peripheral neuropathy which occurred after he started taking statins. My brother also took statins and after some time started to develop peripheral neuropathy as well. So he stopped the statins and the tingling went away. When the doctor suggested that I take statins I flatly refused.

[tex]

I don't know if aspartame has anything to do with paresthesia, but it's a major trigger for MC for almost everyone. Avoiding it may stop your MC symptoms.

Tex

[Patricia]

Hi Pebble,

I just wanted to say that I had/have to deal with paresthesia, too. I started having MC symptoms in spring 2014 and was diagnosed in fall of 2014. By winter/spring of 2015 I started complaining to my PCP about tingling (mostly legs), and weird sensations (feeling of cold in some spots while taking a hot shower, and feeling normal temperature everywhere else), and sometimes numbness. She told me that it did not make sense at all and maybe it was MS or some kind of connective tissue disease and we would just have to wait and see. My anxiety was through the roof at that time. In fall of 2015 I started having muscle twitching anywhere in the body, quite frequently. I was terrified of ALS or any other neurological disease. In the meantime I had switched PCPs and my new PCP sent me for a nerve conduction study and an EMG. It came back completely normal. She then assumed it was due to a B12 deficiency.

At home I use magnesium oil every morning, I also take oral magnesium, vitamin D, and active forms of the vitamin Bs. Over time, I am happy to say, the tingling, numbness, weird temperature sensations, twitching all disappeared, and the anxiety has improved a ton!

Interestingly enough, I have noticed, that if I go away for a week or two, and don't do the magnesium oil in the morning, and am less diligent taking my vitamins, the twitching comes back (it takes about 7-10 days). I am not completely sure, but I think it's the magnesium more than the vitamin Bs. I haven't really figured it out yet. The reason I sometimes take time off from the magnesium oil is because I find it very uncomfortable, burning, itching, sometimes making the skin turn red. I apply it to my legs and have breakfast and then go shower. If I am staying at someone else's house I don't want to come to breakfast with oily naked legs, nor do I want the oil to get on clothes. Plus I can't bring it in carry-on luggage when flying. So I am always happy to take a break from the magnesium oil hassle, but then I pay for it with the twitching. I think next time I will try to up my oral magnesium if I don't do the oil and see if I can avoid the twitching.

Now I look at any of these weird symptoms as a reminder from my body for me to be really diligent with taking my supplements, but not as a sign that I have the worst possible neurological disease. It always calmed me to read that other people on here had a weird symptom I had (and were still alive to tell me about it). So I hope this will help you worry less as well!

I would also like to mention that for me stress affects me more than soy or gluten do (and they do affect me greatly!). I am sorry you lost both your parents. This is very hard to deal with and can affect your digestion more than anything. I am not sure where you are located but most university medical centers offer MBSR (meditation-based stress reduction). I took a class a good two years ago and meditate every so often. It has helped me greatly and is a wonderful resource to turn to if my anxiety flares up.

Patricia

[Tor]

I found this brand new article from a well renown journal very interesting when it comes to food sensitivities and nervous system issues: https://www.researchgate.net/profile/Ja ... cimens.pdf

—Tor

[Pebbledash]

Patricia

I do need to learn to de-stress. I am a type A person, very anxiety prone. That said, the paresthesia started when I was actually moving forward, more in control spiritually, physically, and emotionally.

I lost both parents, my family home, and I am in a high stress teaching job. If I could afford to retire, I would.

I'm hoping University of Chicago Celia Disease Center will offer some way forward. Here is a link to their newsletter that explains a correlation between Celiac disease and neuropathy:

https://www.cureceliacdisease.org/wp-co ... r_News.pdf

Best wishes

Paul

[Pebbledash]

I found this brand new article from a well renown journal very interesting when it comes to food sensitivities and nervous system issues: https://www.researchgate.net/profile/Ja ... cimens.pdf

—Tor

P. 7:

Based on the results of the gluten section of our study, gluten reactivity
can be linked to extra-intestinal disorders beyond CD. Indeed, in our
study, the most common tissue antibody found in subjects, with elevated
IgG only to gliadin, was neurological. CD is known as the “glutenassociated
disorder.” To a much lesser degree, gluten family proteins
from wheat and other grains have been shown to play a significant role
in other disorders including neurological [22, 28-32], cardiovascular
[33-35], thyroid [36-38] and joint disorders [39-41].

Problem is that I have been strictly GF with consistently normal antibodies for 7 years.

[Tor]

There might be more sensitivities than gluten cross-reacting with nervous tissue. That’s what I’m suspecting in my own case. My own peripheral neuropathy has waned after I identified several other sensitivities than gluten.

—Tor

[tex]

Thanks Tor. That's an excellent article. And I'm sure you're right — that cross-reactivity finding applies to all food sensitivities, not just gluten. As I've said before, "celiac disease is a walk in the park, compared with MC".

Tex

[brandy]

Paul,

The diet in the Wahls Protocol book will not work for MCers as she advocates for 9 cups of veggies a day but the book is an interesting read and I think anyone can take away some good points for the book as to how to reduce inflammation.