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04-06-2010, 06:56 AM | #1 | |||
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Or, you need to have your B12 checked. Even if you aren't celiac, the gluten is BIG time damage for us, and double DQ1's are more prone to neuropathy. I have been taking B12 for 5 yrs and it did significantly slow my neuropathy progression. It doesn't work overnight, it takes time...was over 2 yrs before I noticed a big improvement. When you have your B12 tested, ask for the number, don't let them tell you it's in normal ranges without getting the number. Our normal ranges, and the doctor's normal ranges often times are very different.
I too am double DQ1---HLA-DQB1,0602 and HLA-DQB1,0603. We also often times are super sensitive...which with your list of no soy, no casein, and no yeast, means you are super sensitive. Be very careful with "gluten free" labeled foods, they are not actually gluten free, they can be anywhere from 5-20ppm of gluten and labeled gluten free. I can't eat any of them, at this time, I am totally grain free. When glutened, my neuropathy symptoms flare.
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Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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"Thanks for this!" says: | DejaVu (09-17-2010) |
04-08-2010, 10:35 AM | #2 | ||
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Thanks, all.
MrsD - I'll repost my question on the PN forum as well. I just browsed through it looking for gluten-related threads and did find a few. Glenntaj - I sure hope you're right and it's nerves waking up, not nerves dying off. It really does feel like things are getting worse suddenly, but I'm going to keep a positive thought. Deb - I should have mentioned I had my B12 checked a few weeks ago and the levels are excellent, so that's not it. Unfortunately. That would be sooooo much easier than eating gluten-free. Since I'm not celiac, I don't have the malabsorbtion problems they do and most of my levels are quite normal except Vitamin D, for which I'm taking a 1x week 50,000 IU to boost it up. Coming off a long, dark, sunless winter, it's not surprising the D is low. |
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"Thanks for this!" says: | DejaVu (09-17-2010) |
04-08-2010, 10:40 AM | #3 | |||
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Wisest Elder Ever
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You might want to read this link, that pabb posted recently.
Why the 50,000 IU D2 you doctor gives you doesn't work: http://www.thevitamindcure.com/blog/?tag=vitamin-d2
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | DejaVu (09-17-2010) |
04-08-2010, 11:22 AM | #4 | ||
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Quote:
My guess is they don't make a 50,000 d3 supplement, or my doc would have ordered it. She's pretty savvy when it comes to these things. |
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"Thanks for this!" says: | DejaVu (09-17-2010) |
04-08-2010, 11:28 AM | #5 | |||
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Wisest Elder Ever
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yes, they do. It is over the counter.
The D2 is the only Rx version. OTC D3 you can get 1,000 IU, 2,000IU, 5,000IU, 10,000 IU and 50,000IU. (BioTech is the one usually recommended). This one is 2,000 IU per drop: https://www.bioticsresearch.com/node/1570
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | DejaVu (09-17-2010) |
04-08-2010, 07:47 PM | #6 | |||
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Quote:
__________________
Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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"Thanks for this!" says: | DejaVu (09-17-2010) |
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