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masterjen

Celiac Associated With Weakness And ?ataxic-Like Symptoms

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I've noticed muscle weakness in my arms and legs (not uncommon, from what I've read here) but also mild difficulty with coordination (tending to trip, dropping things a bit more than usual, and mis-grabbing things more often) and feeling like I have to "think" a bit more before doing something that involves physical movement (for instance, if I want to pick up a piece of paper, instead of just going to pick it up, it's like I now have to focus on what I'm doing). Is this some mild version of ataxia, or is something else going on? I have a referral to see a neurologist, primarily because of headaches and migraines I've been having since diagnosis of celiac and going gluten-free (now in my 5th week), but waiting lists here in Canada are really long. Has anyone else experienced this? Any input you can offer would be much appreciated.

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Article on gluten ataxia:

Mechanisms of gluten ataxia

I think the normal recommendation in these cases are to double check to be sure you're staying completely gluten free. Might sound like a cop out but there's just so many different sources of possible contamination out there that can sneak their way in even when you're being super diligent about reading labels.

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Thanks for the article link!

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Here's a link to the abstract by Dr. Hadjivassiliou that talks about a study he conducted:

Dietary Treatment of gluten ataxia

Google his name (if you can spell it!) and you'll come up with lots of info about this subject. He's one of the leading researchers in celiac and gluten sensitivity related diseases.

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I've noticed muscle weakness in my arms and legs (not uncommon, from what I've read here) but also mild difficulty with coordination (tending to trip, dropping things a bit more than usual, and mis-grabbing things more often) and feeling like I have to "think" a bit more before doing something that involves physical movement (for instance, if I want to pick up a piece of paper, instead of just going to pick it up, it's like I now have to focus on what I'm doing). Is this some mild version of ataxia, or is something else going on? I have a referral to see a neurologist, primarily because of headaches and migraines I've been having since diagnosis of celiac and going gluten-free (now in my 5th week), but waiting lists here in Canada are really long. Has anyone else experienced this? Any input you can offer would be much appreciated.

I have the same symptoms but since going gluten-free in 7/09 they have diminished. Cerebellar ataxia is brain damage, pure and simple. In the case of gluten ataxia it is the result of autoimmune attack on the brain resulting from gluten ingestion. Have I merely stopped any ongoing damage by going gluten-free or will my brain eventually heal? After reading Dr. Hadjivassiliou's article I believe there may be hope, but he did state that length of exposure to gluten will effect recovery. I ate gluten for 55 years and 5 months. What are my chances of a full recovery? Time will tell. But every day I avoid gluten my health improves.

Many times when a gluten sensitive person stops eating gluten he or she experiences what can be described as withdrawal symptoms. These include headache, even migraine. And although 5 weeks may seem like a long time many people have uncomfortable symptoms for months after going gluten-free. And even though you may not have celiac (GI) symptoms you probably have some degree of malabsorbtion syndrome which has caused nutrient deficiencies that come with their own set of symptoms. This happened to me even though I don't have celiac disease. So in addition to learning to eat in a whole new way you'll have to assess the damage gluten has done to your body and try to repair what you can. I don't know anything about your doctor(s) but I can tell you that most physicians don't know how to diagnose and treat gluten sensitivity. What's worse is that they don't even know enough to look for it, even in celiacs with severe symptoms. So, unless you are fortunate enough to come upon a physician who is trained in the diagnosis and treatment of gluten sensitivity you are going to have to work out your recovery on your own. This may be challenging but it is doable. There are ways to repair the gut and end malabsorbtion syndrome. You can ask for blood tests to assess your nutrient levels and correct deficiencies. The important thing is to do your research, devise a plan, and just keep going, even when you hit a rough patch.

By the way, getting through withdrawal is easier if you drink lots of pure water, rest and avoid stress as much as possible, eat nutrient dense foods such as organic fruits and vegetables (juicing is great if you can do it), sweat (exercise or take saunas) and do other things to detoxify the body.

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