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Thanks for getting back to me, Aussie. No, Mike's neuro is not a specialist in neuropathy but he's willing to do anything. He sent us to a specialist in Philadelphia who diagnosed Mike with SFN and ruled out CIDP, which we were very thankful. He had Mike do the fasting glucose test which showed he had pre-diabetes and he tested himself 4 times a day for over a month and his sugar levels were always within normal range.
Mike is 49 and when he was 16 he had a year of chemo which probably caused some nerve damage although he didn't have this pain until 2 years ago when this autoimmune process started. Mike was on a number of pain meds. which none of them worked, just like several members on this board. I've also done a ton of research and it was in October I found that gluten can cause SFN is a small percent of people and we decided to give it a try because we nothing to lose but the pain. It was amazing how the pain decreased and our primary doctor and neuro were thrilled and were happy to be learning something new. Over time, even though gluten was omitted, Mike's pain went up and down until Feb. when it was back up to a 10 and he was getting ready to get the scooter back out. We started going to our local celiac support meeting because we wanted to get as much information as we could and you learn so much from talking to others. An older women was telling us that a lot of times it's not just gluten but other foods such as dairy and soy that you can have allergies to along with the gluten. Mike started the SCD (Selective Carbohydrate Diet) where he is eating only meat, fish, fruits and some veggies. We omitted the night shades - tomatoes, green peppers, eggplant and white potatoes because they can cause pain. Well his pain level decreased and has stayed there except he is losing weight which he doesn't need to do. Now that his pain level is down we will start introducing one new food a week.
We also met two other men at the meeting who after several years were diagnosed with gluten ataxia where the gluten was attacking their brain. There were a lot of similarities between them and Mike.
He has seen both of his doctors this past week and they are convinced food is the culprit and are still amazed at his progress. In fact our neuro is starting to have people get off gluten for a couple of weeks if all the other tests fail to show something. We were wondering if there was a doctor who could help us with this type of thing because even the allergist we saw couldn't help us. Is it food allergies or is Mike's body lacking the enzymes to process certain foods? Our primary called an endocrinologist among other doctors and said he would support us going to the Cleveland Clinic because he couldn't find a doctor in Rochester to help us. To make a long story short, that is why we're now going to pursue a holistic approach. Again, what do we have to lose? They do blood work and urine and stool testing to see how your intestinal flora is and recommend supplements.
Aussie, what supplements do you take? Mike takes Metagenics 6:1 EPA:DHA, B12 sublingual, a multi and Vitamin D.
Thanks so much for sharing. We're so glad you are so well and that you still take the time to help all of us.

Take care,
Cindy





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