Went to new neurologist for second MS relapse in 8 years. Was hoping for definitive answers but left more confused than ever. Neuro said, "something is irritating the white matter in your brain". He said he didn't think it was MS, but is sending me to the MS clinic anyway and wants me to have a test for celiac. Anyone ever hear of celiac that appears in a relapsing remitting fashion and irritates the brain?
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Yes, there is neuro celiac. If you type "neuro celiac" into a internet search engine, you will get countless links. I have celiac disease and I happen to carry two DQ1 genes, one from each parent. The DQ1 gene is associated with celiac disease that directly affects the brain. If you look at the research from Dr. Hadjivassilio, you will find a great deal of information. He is a professor of Neurology from Sheffield, England.
It is definitely an avenue worth exploring and not ***. I happen to be Canadian and there is a lot of Celiac Disease is Canada. I underwent gene testing, endoscopy and stool sampling to get my diagnosis. I have been gluten free since 2005. I have other autoimmune issues that are affecting my neurological system but there was improvement once I stopped consuming gluten. My GI symptoms really improved.
The longer you go without MRI changes the less likely it is that you have MS. From what you said, your two MRI's, done 8 years apart, showed no change. That could indicate that you have a MS mimic and it is time to look for other answers.
See the MS specialist and go from there. The more eyes you have on you, the better. Many of these diseases are difficult to diagnose and are not straight forward. I am going 10 years without a specific diagnosis and I have lesions all over my brain and a positive LP. I was just recently told that I have Mixed Connective Tissue Disease. Good luck on your search for answers. -
Thanks for your response. I am definitely going to get the test to see if I do in fact have it. Since nothing else has been definitive I need to go down that avenue. Was just surprised as no one else ever mentioned it. One thing I am wondering though is can celiac relapse and remit. My exacerbations were 8 years apart. Would this still fit with celiac?Comment
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Well I decided to go off the gluten and I have not noticed any improvement. Symptoms remain as before. Only benefit is I am losing weight. I will give it some more time, but this is why I was skeptical about a treatment plan for an undiagnosed condition.Comment
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If you have a gluten type problem it could take years for your current symptoms to improve, if at all. What you would find though, is that off gluten, things don't get any worse. If you google things like 'gluten ataxia' or 'non celiac gluten sensitivity' you may find some useful information. Untreated, gluten ataxia etc can turn into some really nasty diseases that make MS look like child's play so it's really important that you get to the bottom of things if you have even the slightest suspicion that this is the problem.
There's a really good article by Prof Hadjivassiliou - gluten sensitivity, from gut to brain that you may want to read too.Comment
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