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Found 1 result

  1. Hi Everyone, I am new to these boards. I have been reading though and the information posted by others has been very helpful. Thank you to all of you but especially to Ravenwoodglass. Five years ago, one of my sons was diagnosed with type 1 diabetes. While he was in the hospital, he was screened for celiac, and the blood tests came back positive. He ended up with a celiac diagnosis too, and it became apparent he could produce more of his own insulin when adhering strictly to the gluten-free diet. He experienced a prolonged t1d "honeymoon" which did not end until he had been in college for a year. While away at school he has had many more gluten accidents which I am sure was a contributing factor to his now need for more injected insulin. One funny detail is the medical doctors insisted that my son would need less insulin when glutened (as food won't be absorbed properly for a little while afterwards). But for my son, it was always the opposite. During his t1d "honeymoon period" he still made much insulin -- his honeymoon lasted an unprecedented three years (as compared to typical, six months for a newly diagnosed t1d patient). My son's basal insulin need would at least double after a glutening. It would take days for his body's own residual insulin production to return to normal. (I haven't bothered to explain what a t1d honeymoon period is, as it probably is of no interest to people who do not have t1d in their family -- and those who do have it in the family likely know what the honeymoon is -- hope that's ok). In 2011 I did a gluten challenge and had great difficulty with it. I had gone gluten free a year earlier to see what the challenges were, so as to help my son with his diet. Three weeks into the gluten-free diet I had noticed great improvements in how I felt. On the challenge, I could not consume more than a tiny amount of gluten (half a saltine) - I would then have severe dizziness and watery D. Foolishly, I continued with the challenge, going on an off gluten that month (going off when I had to drive the next day). The dizziness was far too severe to allow me to drive, and the D kept me near a bathroom. My antibodies had tested negative (not surprising as I had been gluten-free for the year before being tested). My endoscopy was negative for celiac, and I was pronounced non-celiac, and just presumed gluten sensitive by my reaction to gluten (the dizziness and D). Long story short - the four years since then have been bad news. I had the endoscopy in Aug 2011and started to recover from it, but then started getting worse again in Oct 2011. It took me about 15 months to figure out I had become more sensitive to CC. I stopped eating diner fried eggs (for example) and the persistent D went away. But neurological problems continued getting worse. Next thing I was getting worked up for possible MS, and had abnormal brain and cervical spine MRIs. But oddly, I was presenting with a relapsing remitting pattern in terms of symptoms, while the images looked more like PPMS -- few lesions, but in very bad locations. Lesions to cervical spine, brainstem, cerebellum. Also, my vitamin levels were dropping, especially B12 and zinc. Actually, the drop in B12 happened earlier (around the time the damage to spinal cord was detected). More recently I was diagnosed as deficient in zinc. The detection of the zinc deficiency is helpful as I had also developed new immune system problems - low lymphocyte counts, low celiac disease cell counts -- I was tested for HIV eighteen months ago (when immune cell counts became abnormal and I was getting repeated shingles, odd for someone my age). I was HIV negative (no surprise there). So it seems zinc deficiency interferes with production of immune system blood cells. I am hoping the white blood cells will normalize with zinc supplementation. Of course it took forever to discover the zinc deficiency, since I have "no risk factors" for it -- since I was officially deemed celiac disease negative with my negative endoscopy (which I should add was done properly, according to all accepted rules, by a top expert in celiac disease). I had a neurologist who did not bother with spinal tap, and actually tried to conceal from me some of the abnormal findings (I think he thought it was untreatable PPMS and I was better off not knowing, and he might have figured my neuro abnormalities were still mild enough he could get away with delaying the "bad news"). But I was having horrible flares and finally consulted a different neuro, who did the spinal tap. NEGATIVE for o-bands, negative for increased igg index 0-- and slightly LOW rather than high spinal fluid protein level. I also recently discovered there were already periventricular white matter hyperintensities on a brain MRI done in 2003. These were not mentioned in the radiology report from 2003 (ridiculous). I have none of the typical "Dawson's fingers" that one sees with MS. Mine are smaller and milder. (That too would be consistent with PPMS, less damage visible on brain MRI -- unless, it isn't MS at all, which might be suggested by the spinal tap done a month ago which was negative for all signs of MS). So given the chronology and the fact I took ill especially immediately following the gluten challenge, and because I realized I am very sensitive to CC (cross contamination) -- about three weeks ago I tightened up the gluten-free diet, eliminating all grains (as I have heard grains, even gluten-free ones, can have miniscule contamination with gluten). I am doing so much better. No dizzy spells since eliminating all grains and other processed foods! I have lots of damage, numbness in legs, feet, and especially toes, and some in hands and on my face (inside my mouth too, and I have had swallowing problems). I have some hearing loss too which I think is a result of damage near the acoustic nerve, in my cerebellum. I lost my acoustic reflexes (more evidence of "dings" in brainstem). But I will stick to my new, very strict diet, and will see how it goes. Since going on the very clean diet (for presumed super sensitivity to gluten),I have had some new mild pain in formerly totally numb toes. I seem to be regaining some more sensation on my face. And I have had no vertigo, and no light headeness! I have never had a positive blood test for TTG or anything like that, but two of my three sons tested positive (DGP IGG, TTG). I did an enterolab test for gliadin, and the value actually tripled between the time I was on the gluten challenge (in 2011) and summer of 2013, when I was already showing significant signs and symptoms of MS. In 2013 I had been on a gluten-free diet since my gluten challenge ended in summer 2011, but the Enterolab report commented that there likely were hidden sources of gluten in my diet as I was still producing the gliadin antibodies and the level was so much higher. I can't be certain the cleaner diet is responsible for me feeling better these last 3 weeks -- since my symptoms have had a waxing and waning quality. However, I am going to give it a serious trial, and for at least the next year I will not do anything that could be risky, in terms of diet (I will continue to avoid processed food and grains). I appreciate all the helpful advice posted on this site. Any advice directed my way would be most welcome. I will keep you posted on my progress. Thanks again to everyone who has posted helpful info in the past. Cheers, Hannah
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