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I still don't have a final diagnosis, and what I may actually have there may not be a test for, if it were ciguatera poisoning... but the good news is that I don't have any demyelinating disorder. So this week I'll have some more glucose tolerance tests done to see if blood sugar has anything to do with it. If not, then we'll treat it like celiac neuropathy. My neurologist is really good, I'm just hoping she really knows celiac neuropathy before we get into any more tests and treatments.
The bad news is that she would like me to wean the baby, so we can be more aggressive in the treatments. He's almost a year old, and his teeth are real sharp, so I'm not too unhappy about it, but he's of the disposition that he'd never wean himself if I left it up to him. I think I'll try to get some saliva from him this week, and see if I can get enough to do the secretor test. If he's a non-secretor, then I'm more reticent to wean him. Maybe that will motivate me to stick to the diet better so that I don't have to have more aggressive treatments, though getting bit now and then certainly motivates me in the other direction.
I'm not sure if the tests will show glucose metabolism abnormalities, but I do think I have some. My right foot first had numbness after my first baby was born, then everything got worse after the second...common link could be my weight, which makes pre-diabetes more of a concern. I gain quite a bit when I'm pregnant, and I don't usually lose it until after I stop breastfeeding. I have lost 10 or 15 pounds in the last few months, but I still have a ways to go. Today I wore a skirt that I haven't fit into for a while, I was happy about that since my selection of "big" church clothes is pretty limited.
My theory is that a bad gluten incident ant a restaurant opened the door for other things to get through my intestines into my body. What came in through the open gates? A little ciguatera, a little too much glucose too fast, some allergens, a lotta lectins... or a cocktail of all of the above. If that zonulin receptor antagonist comes to market, I may start popping that pill...since it appears that zonulin not only weakens the gates in the intestines, but also in the lungs and blood/brain barrier. I could probably use fortification in all of those locations! Combine that research with Dr. Shoemaker's research about the celiac HLA genes making people more sensitive to toxins, and you see that there may be something to tie it all together.
Why I still have a hard time sticking to the diet, I don't know. When I thought I might have MS, I was very motivated to be very compliant. Sure diabetes and celiac aren't as frightening, but the symptoms are still serious, and it really truly undoubtedly responds to the diet...so why do I cheat? My toddler is the only person who asks "why" more often than I do! "Why why why???" It's cute when he says it, but usually ends up going all the way back to the meaning of the universe before the conversation ends!