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CampbellS

Celiac,neuropathy,ataxia,small Motor Neuron And Muscle Fiber

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I am having a lot of neurological problems now. I have been a celiac undiagnosed for the first 29 years, and have been on a strict gluten free diet for the past 30 years. I have no problems with the diet, only have had recent problems with prescribed medicines that were not gluten free in the past few years. I have been having problems with occasional ataxia, full blown neuropathy and atrial fibrillation. Two years ago came down with Wernicke's, severe Vitamin B deficiencies. Have been treated for this, but still have problems. I have been on a waiting list for the past 20 months to see a specialist in Neurology for small motor neuron and muscle specialty. I would like to find a specialist for help. Fatigue and muscle weakness, have always been a problem. I am a physical therapist married to a physician; knowledge or connection doesn't help to get in to see someone. Moderator please delete stuff if I am too detailed. Would like to have help finding a specialist to get into; as to prevent further decline. Have had full neurological workups and had MS ruled out. Any help from another educated celiac would help. Vitamin supplements, injections or even IV,s have not helped. Neuropathy pain is varied and uncomfortable. Thanks for any input

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Hmmm....yours seems like a difficult case. I've had muscle pain and neuromuscular complications all of my life, and I wasn't diagnosed until I was 47. I have two suggestions that have personally helped me. The first suggestion comes from the book "The Hidden Story of Cancer" in which the author describes how using a ratio of Omega 6s to 3s can fully oxygenate the cells of the body. By following the author's recommendations, I was able to fully recover from muscle weakness and pain--and I recovered immediately. The book goes into calculations on how to find the right ratio of numerous oils, but I can tell you that if you take 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of organic safflower oil mixed into either a smoothie or a glass of juice, you'll have the right ratio of Omega 6s to 3s. I have taken these oils daily for the past five years, and they are the ONLY five years of my life when I didn't experience weakness, pain, and long recovery times from exercise. I know it sounds too good to be true--but it IS true. I recently recommended this solution to a newly diagnosed celiac who was experiencing muscle weakness and pain, and he immediately improved so that he could begin running long distances again.

My second recommendation is to take Manganese, because we need it for muscular health. If you do some research on Manganese and how it is necessary for the health of our muscles, you'll see how important a nutrient it is--especially to celiacs.

I hope one or both of these suggestions help you.

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You might want to add a sublingual B12 into your vitamins if you are not already. If you take a multi with folate that can make your B12 levels look higher on testing than it really is. B12 is water soluable so it is hard to take too much and it is important that it be a sublingual not a swallowed tablet. Is your home gluten free? You may be getting enough gluten in CC to keep the antibodies attacking your nervous system. If your DH is not gluten free is he brushing his teeth well before you kiss? Are you being really careful eating out? It isn't enough to just order stuff that 'looks like it is safe' as they need to take special precautions in the kitchen. How about your personal care items? Are those gluten free? Those of us who have neuro symptoms can be very sensitive to very small amounts of gluten and many doctors are not aware of how little gluten, even a small amount of wheat starch in meds, can affect us. Do not take any meds unless you have called the maker to be sure they are safe first.

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 I might be able to help on this one. My background is in Medical Science and Natruopathy. Of late I have been doing an online masters class in the researched help into Gastoenterolgy and Natural medicine. Last nights lecture was on gluten related diosrders. Very well resaearched and presented by a Phd Naturopath who specializes in this area.

His take on this was that the gut of certain coeliacs takes a very long time to recover-and can harbour some nasty parasites and bacteria even after all gluten is eliminated. This will then affect absoprtion  inflamation, oxidative stress and mitochondrial functoin. (and mitochondrial fuction is huge in neuro stuff and energy to hame a few thigns)

 

So I woudl suggest that you have a GFx test by Metamatrix (ordered by a physician), an Organic acids test (TRIAD with  blood spot food allergies.) If money is not an issue then Amy Yaskos Methylation profile-ignore the fact she does a great deal on autism, the fact is she will guide your professional to correct the gentic snips-or variiants  that can then impact for example ammonia levles in the gut and throw the whole system (incuding neurological) in to dissaray.

 

Only today I met with another Naturopath who  has a great deal of experience  in the area, we were brainstorming and also she was teaching me to mange the complex cases-by dealing with the gene snips and gut and organic tests.

 

I know it sounds a lot-but try and find someone who deals in this stuff.

the Gfx test is critical-is is basically a DNA test on what bugs are in  your gut. then you can start to fix it.

 

Probalby a bit too much information, but feel free to message me and ask any questions. Its mind boggling complicated, and one has to have a very good grasp on biochemistry, micorbiology and gentics to "get' the picture and prescribe the right treatment.

warm regards

Jane Perth WA

 

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