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Hi everyone, thanks for all of your suggestions and support. I learned a lot,
but still was not improving until my dr put me on prednisone. I am waiting for
the celiac panel blood work to see if I am getting contamination somewhere,
the next step is an internist and neurologist. My dr here says it is maybe
more of a myopathy (muscle not working) than neuropathy. I did find that
more specifically, it is proximal muscles and walking up and down stairs,
kneeling, lifting my arms, or lifting anything heavy (sometimes even a fork is
too heavy). I have also had more pain with this episode than before.
Someone in my town is in a wheelchair for life becuase of vit B12 deficency -
please do not let this go if you suffer from it.
Someone gave me some sauve that he makes for nerve pain that worked
incredibly well - the ingredients are coconut oil, arnica (he buys the flowers in
bulk), devil's club (dont know if you can get this out of alaska), comfry,
peppermint, and a tiny bit of ecalyptus and beeswax.
Here is a summary of posts, I have cut down what folks said to keep it short,
email me if you have questions or want more explanation.
I didnt get any specific dr names.
Thanks again to all!
If I was doing B12, it would be the sub-lingual ones. Rexall makes a g.f. one
that's sold at Walmart.
There is lot of info recently on Vitamin D requirements being too low, with the
RDA probably being closer to 2000 iu/day...The MS site at www.direct-MS.org
has a suggested diet & list of supplements that includes 4000 iu of Vitamin D.
NOW makes a 1000 iu in gel cap form...probably better absorbed than hard
pills, which many are.
My hubby has gluten ataxia. Do you get the Loving Without magazine?? Our
story was in the winter issue..
For brain fog, ginko biloba and DMAE have helped me.
She also suggested stairs for exercise - and getting friends to watch the kids,
and reminded me that I do get exercise caring for the chidlren!
... helps me a great deal in staying healthy is to eat a ph balanced diet. I had
severe osteoporosis and so I found this website. I found the book helpful and
not just for my bones......//www.betterbones.com
Have you been tested for Hypoglycemia? www.celiacasonline.com
processed sugar increases the muscle weakness and neuropathy... either
that, or I am indeed getting minute amounts of gluten and don't realize it.
body rolling, on a small inflated rubber ball, and it has saved my life in terms
of muscle pain..
my muscles are very much weaker when I am overtired.
try taking the homeopathic remedy Hyperiicum 30c...2 pills 4x a day
enzymes (not with maltese-a malt derivative)
B3, Magnesium.... liquid form with boron and D in it,
Exercise , as you say is probably the best.
Treating Yeast...get online with out a prescription for his called "Threelac"
which is supposed to be even better than diflucan or Nystaten.
Epsom Salt baths really make a difference in detoxing
Ginger tea,
Emergen-C ****note about this - unless they have changes in the past
months, there are two flavors that contain gluten, and all of hte batches may
be contaminated - you need to check, the one with calcium - raspberry or
cranberry are NOT GF!!!*****
Beatine Hydrochloride. It helps regulate the acid level in your gut, and
probably a lot of other things also.
toxicity - esp mercury and lead
her celiac aware neurologist....responded that celiac neuropathy can arise
long after dx and after years of dietary compliance. This person had proven
compliance by endoscopy.
book called "Could it be B12: An epidemic of
misdiagnoses"......the form and quantity of B12 makes a
difference. Apparently there are many people who cannot process
cyanocobalamin, this form of B12 (many celiacs fall into
this category). We should get our shots in the form of
hydroxycobalamin. when it comes to sublingual tabs we should get our B12 in
the form of methylcobalamin to ensure that the body can use it.
fibromyalgia? see rheumatologist...fatigue, pain, sensitivity, occasional brain
fog
Cut out the sugar/carbs If you have a leaky gut / dysbiosis / intestinal yeast
or bacterial overgrowth, you will probably notice a big difference
Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC
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