Neuro Symptoms (Twitching + peripheral neuropathy)

[Z4CH]

Hey everyone, 

New here. Always been a bread eater. About a year ago, I started developing terrible joint pain. Had to stop going to the gym (had been body building for 5+ years). I thought maybe giving my body a break would be the fix, but then I started getting terrible twitching that began in my quads and spread to all four limbs, stomach, face, inner ear (didn't know that was possible lol). Started freaking out thinking I had ALS and doctor google was helping. Anyway, then one day I woke up with terrible pain and weakness in my left arm. Went to spinal specialist and he said I had peripheral neuropathy (he noted weakness in arm). I was put on a heavy does of gabapentin (1800 mil per day) which helped with pain but did not resolve anything (and it made my work productivity go way down for 6 mo). anyway long story short, got two EMGs, saw too many doctors and was sent home the doctors saying I'm totally fine... ? They even sent me for a neck MRI... nothing... 

 

Finally, found some obscure case study of some guy who was celiac and had twitching/peripheral neuropathy. So I thought, "I'll try the diet thing." After a month gluten free, my arm pain completely resolved and my twitching reduced slightly. My full strength is almost completely back in my left arm and my joint pain has been reduced substantially. Back in the gym too

 

So 3 questions: 

 

1. Anyone else gets twitching/fasciculations related to celiac? 

 

2. Any recommend resources for adult onset celiac disease? 

 

3. This is probably a dumb question, but does this whole thing sound like celiac at all? I've been freaking out for year about all these symptoms and kinda just want to know what's going on and if anyone else has a similar story. 

 

Anyway, sorry for the long post! Thanks in advance for your input! 

[GFinDC]

Hi Zach,

1- Yes, peripheral neuropathy is a known symptom of celiac disease.  I had some muscle twitching before going gluten-free but it resolved after while.  Celiac can cause malabsorption of nutrients our bodies need to function.  The B vitamins including B-12 are sometimes low.  People can also have issues with vitamin D, iron, copper, manganese, selnium etc.

2- This forum one of the ebst resources for celiac disease.  There is also the University of Chicago celiac center which does research on celiac and has good info.

3- Your symptoms could very well be caused by celiac disease.  Celiac can affect the whole body or different areas.  There are many possible symptoms of celiac disease.

[Z4CH]

2 minutes ago, GFinDC said:

Hi Zach,

1- Yes, peripheral neuropathy is a known symptom of celiac disease.  I had some muscle twitching before going gluten-free but it resolved after while.  Celiac can cause malabsorption of nutrients our bodies need to function.  The B vitamins including B-12 are sometimes low.  People can also have issues with vitamin D, iron, copper, manganese, selnium etc.

2- This forum one of the ebst resources for celiac disease.  There is also the University of Chicago celiac center which does research on celiac and has good info.

3- Your symptoms could very well be caused by celiac disease.  Celiac can affect the whole body or different areas.  There are many possible symptoms of celiac disease.

Thanks so much! I'll check out the resources here and from the University of Chicago. 

 

[trents]

Zach,

There are also gluten-related neurological problems (such as ataxia) that are not caused by Celiac Disease. Not all people negatively affected by gluten have Celiac Disease. If you have not done so, you need to get tested to find out if you actually have celiac disease. The first step is a blood test which if positive, needs to be followed up by an endoscopy which is the gold standard for diagnosis of celiac disease. In Celiac Disease the mucosa of he small bowel is damaged by an autoimmune reaction to gluten and that separates it from simple gluten intolerance or other gluten caused problems. In the end, the anecdote is the same - eliminating gluten from the diet - but you need to know what you are dealing with. The person with non celiac disease gluten-related health issues may need to be less scrupulous in avoiding gluten. That is to say, they may be able to consume foods that don't have gluten as an intentional ingredient but have small amounts of gluten because of cross contamination. The person with celiac disease must be much more diligent to avoid even trace amounts of gluten which find there way into products during manufacture or preparation in facilities that also produce or cook products that contain wheat, barley or rye. 

[Z4CH]

10 minutes ago, trents said:

Zach,

There are also gluten-related neurological problems (such as ataxia) that are not caused by Celiac Disease. Not all people negatively affected by gluten have Celiac Disease. If you have not done so, you need to get tested to find out if you actually have celiac disease. The first step is a blood test which if positive, needs to be followed up by an endoscopy which is the gold standard for diagnosis of celiac disease. In Celiac Disease the mucosa of he small bowel is damaged by an autoimmune reaction to gluten and that separates it from simple gluten intolerance or other gluten caused problems. In the end, the anecdote is the same - eliminating gluten from the diet - but you need to know what you are dealing with. The person with non celiac disease gluten-related health issues may need to be less scrupulous in avoiding gluten. That is to say, they may be able to consume foods that don't have gluten as an intentional ingredient but have small amounts of gluten because of cross contamination. The person with celiac disease must be much more diligent to avoid even trace amounts of gluten which find there way into products during manufacture or preparation in facilities that also produce or cook products that contain wheat, barley or rye. 

Thanks for the reply! 

Would I need to go back then including gluten in my diet for the test to be accurate? Because I’ve tried reintroducing it a few times and feel absolutely miserable afterwards. Twitching, joint pain, shin pain, gut issues, bloat that lasts 3 days or more, etc. 

I’ve been avoiding it like it’s satan himself lol. Getting back on it sounds horrible. 

Now I can walk miles without issues. But when I reintroduce gluten it’s painful walking after a hundred yards. Same for lifting weights. 

Also, I don’t have any issues with balance, gait, or fine motor skills which I know are the most common symptoms of ataxia. 

[trents]

I was just using ataxia as an example of a non-celiac gluten-related neurological disorder.

Yes, you would need to go back on gluten to get a valid blood test screen and if you have been off of gluten for a significant period of time so as to allow for healing of the small bowel mucosa then an endoscopy would not be definitive either.

Have you totally eliminated gluten from your diet or just cut way down? Have you educated yourself about cross contamination and how gluten is disguised via terminology in prepared foods and how it can even be included in some meds as a filler? My concern here is that people who are self-diagnosed often aren't convinced enough that they have celiac disease in order to be scrupulous about avoiding it. The result of just cutting down but not totally eliminating gluten can be improvements with regard to gross symptoms but continued damage to intestinal villi resulting in longer term medical problems such as osteoporosis and other diseases caused by poor absorption of vitamins and minerals. When there is an actual clinical diagnosis of celiac disease people tend to take it more seriously.

[GFinDC]

5 hours ago, Z4CH said:

Thanks for the reply! 

Would I need to go back then including gluten in my diet for the test to be accurate? Because I’ve tried reintroducing it a few times and feel absolutely miserable afterwards. Twitching, joint pain, shin pain, gut issues, bloat that lasts 3 days or more, etc. 

I’ve been avoiding it like it’s satan himself lol. Getting back on it sounds horrible. 

Now I can walk miles without issues. But when I reintroduce gluten it’s painful walking after a hundred yards. Same for lifting weights. 

Also, I don’t have any issues with balance, gait, or fine motor skills which I know are the most common symptoms of ataxia. 

Yes, to be tested for celiac disease you have to be eating gluten.  Fun Fun! Not!!!

The UofChicago recommends 3 to 4 weeks for the endoscopy testing and 12 weeks of eating gluten for the blood testing.  That gluten eating period is called a gluten challenge.  And it certainly is a challenge to complete it for people who have gone off gluten already.  It seems like going off gluten and then back on it makes symptoms worse or at least more noticeable for some people.

Personally I don't recommend doing the gluten challenge and testing for people with neurological symptoms.  The reason is that nerves are slow to heal and the damage encurred during a gluten challenge could be long lasting.  It doesn't seem worth the risk to me.  There are different possible causes for gluten related neuropathy though.  One is possible cause vitamin deficiency.  Another is an AI (auto-immune) attack on the nerve cells.  Of the 2 an AI attack is more dangerous IMHO.

It's really important to stay 100% gluten-free if you have an AI nerve problem IMHO.  Celiac is an immune system attack on the body.  The immune system does not stop attacking the day after you stop eating gluten.  An immune system flare could last for weeks or months, depending on your individual immune system.  It only takes a very small amount of gluten to start an immune flare-up in celiac disease.

[Z4CH]

8 hours ago, trents said:

I was just using ataxia as an example of a non-celiac gluten-related neurological disorder.

Yes, you would need to go back on gluten to get a valid blood test screen and if you have been off of gluten for a significant period of time so as to allow for healing of the small bowel mucosa then an endoscopy would not be definitive either.

Have you totally eliminated gluten from your diet or just cut way down? Have you educated yourself about cross contamination and how gluten is disguised via terminology in prepared foods and how it can even be included in some meds as a filler? My concern here is that people who are self-diagnosed often aren't convinced enough that they have celiac disease in order to be scrupulous about avoiding it. The result of just cutting down but not totally eliminating gluten can be improvements with regard to gross symptoms but continued damage to intestinal villi resulting in longer term medical problems such as osteoporosis and other diseases caused by poor absorption of vitamins and minerals. When there is an actual clinical diagnosis of celiac disease people tend to take it more seriously.

For the first two weeks I was being very careful and had some good results. But I was still eating out and just ordering stuff with no gluten. The past month I’ve only eaten at home. Absolutely no gluten. Check religiously and googled everything I wasn’t sure of. Also cut out dairy and egg. I make all of my meals from scratch too. Saw a much faster improvement after stopping the eating out. 

[trents]

I have found, and I think a lot of other Celiacs would agree, that we cannot do a good job of eliminating gluten from our diets when eating out, even when being conscience food detectives.