Celiac Disease and Benign Fasciculation Syndrome

[bridge9]

The month before my twitching began, I was diagnosed with the beginning of Celiac Disease. I was on a Gluten-free diet for just a few weeks when the twitching began. Does anybody out there have Celiac disease? And are there any thoughts on malabsorption and BFS?I am on a strict g-free diet, so I shouldn't have absorption problems anymore, but I still wonder if the two are related in anyway... Especially since they started around the same time.-Ant

 

[JoggingCub]

Ant, Funny you should mention this, see the Questions section, as this month Laurent speculated on this as well.I was tested for the Celiac antibodies, but didn't have any, so I don't have the disease, but it was thought since initially my Vita D & B12 levels were so low. I think fasciculations are related to Celiac's but I could be wrong.

 

[bridge9]

Runningbear-My antibodies came back negative as well, but when I had an endoscopy, the biopsy came back positive for Celiac. The blood test has a VERY high false negative rate... my blood test has been negative twice, but two gastros, including one of the foremost Celiac experts in the country at the Mayo clinic has ordered me to stay gluten free, and say it's Celiac Disease. The biopsy is the gold standard, and simply doesn't lie. The blood test is nowhere near as reliable. Many many people with Celiac Disease have negative blood tests. I would highly reccomend that anyone that has ongoing stomach issues get an endoscopy.I do think they are related in some fashion... I'm just not sure quite how much. I think it all definitely ties in though.-Ant

 

[LindsayCohen7]

I began twitching 5 years ago. It was constant and awful, and came along with peripheral neuropathy and tingling and dizziness and numbness. One year ago I went gluten free and now my twitches are minimal. I'd say gone, but I don't want to jinx myself! I might feel one a few times a week. Amazing. I still have some of the PN symptoms, but for me, gluten just might have been the key. please remember tgat that it takes at least 9 months for your body to rid itself of gluten so it may be awhile before you get the full benefit of your new diet.

 

[AllGoodHere]

Linda - it's great to hear you have found some relief with the gluten-free diet.I have a friend with celiac's for many years now - she tried taking dietary supplements and says they do not work for her. Sticking to the gluten-free diet is the only thing that does it and this takes care of the malabsorption and the various symptoms. Ant - have you given it enough time? Also, my friend says that sometimes it is difficult to keep some vitamin levels up so she takes some B vitamins and D in the winter or just a good multivitamin. Have you asked your doc?Linda - what do you think about needing vitamins - maybe you can throw in on this since you have personal experience with the diet?

 

[LindsayCohen7]

I haven't been diagnosed with Celiac - I'm fairly certain I have gluten allergy/intolerance rather than celiac. This is a conclusion I reached by myself after trying everything to reduce my BFS symptoms. I did tell my primary care doc about how the gluten free really helped and he was not surprised - said more and more they're realizing that gluten can do awful and strange things to the body.I took a million supplements the first four years of BFS, with almost no success. now I take a daily multi, D in the fall and winter, a calcium mag mix, and alpha liopic acid. I am not sure if I had the malabsorption problem. After years of trying everything, my theory on my BFS is that it is caused by internal inflammation brought on by allergies, both food and environmental. Removing gluten lessened my allergy load, hence less inflammation and less BFS.I think BFS is caused by different things in different people - which is very annoying when looking for a solution. This is working for me at the moment, but I'm never convinced that it will stay that way, since that's the nature of BFS.

 

[bridge9]

It's hard for me to judge, based on the fact that I began my gluten-free diet right around the same time the twitching began. So, it's really hard to say whether the diet has helped. I have been gluten free for more than a year, so I do think it's been long enough at this point. I think it's all connected somehow. Then again, gluten intolerance/celiac disease affects one in 100 (maybe more), which in reality is a HUGE portion of the population.I do take a multi vitamin every day. For a while I was also on b6, but I didn't notice much of a difference.-Ant