Hi Hemse,

Don't just learn to live with it! You're at the right place to get helpful ideas!

Mrs. D. has great info, including info from "Rose", about how a Vitamin B12 deficiency causes terrible peripheral neuropathies. See Mrs. D's "sticky" thread about this.

Have you had the 3 blood tests (in one needle stick) to see if you might have a Vitamin B12 deficiency? (all 3 are necessary)

1) Vit. B12 blood level test
2) MMA/Methyl Malonic Acid blood level test
3) Hcy/Homocysteine blood level test

(Mrs. D. and Rose, or anyone,-- if I made any typos about this, let me know).

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Cara knows very much, about how a GLUTEN SENSITIVITY (&/or milk protein sensitivity, etc.) can cause small intestinal mal-absorption, including Vit. B12 deficiency, leading to all kinds of neurological problems.

Do you eat gluten? (a protein-like substance in wheat, rye, barley, "cross contaminated" oats, etc.)

Do you eat or drink milk products (containing milk proteins)?

If you're "sensitive" to gluten &/or milk proteins, then eating or drinking these proteins, can cause various auto-immune attacks on many areas of the body---including the pancreas, causing DIABETES, &/or the THYROID GLAND, &/or JOINTS (causing rheumatoid arthritis), &/or BRAIN (causing seizures, foot dragging, wide based gait, etc.), &/or SKIN (itchy rash called Dermatitis herpetiformis I believe) &/or SMALL INTESTINE (causing either Celiac Disease, or a non-Celiac type of small intestinal damage, INLCLUDING "MAL-ABSORPTION" PROBLEMS), &/or REFLUX, &/OR PERIPHERAL NEUROPATHIES!)

See Dr. Kenneth Fine's "EnteroLab" website, about non-invasive stool sample testing, to discover food protein "sensitivities", at www.finerhealth.com (Cara first told us about this website, and about Dr. Fine, MD--gastroenterologist out of Dallas, TX)

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Do you take ACID BLOCKERS for ulcers &/or for GASTRIC REFLUX? If yes: These prevent the stomach from making "Intrinsic Factor" molecules, which are needed to escort dietary Vitamin B12 from the stomach to the last part of the small intestine (ileum), where the Intrinsic Factor molecules would let go of their cargo--Vit. B12 molecules--and the Intrinsic Factor molecules then "facilitate" absorption of the Vit. B12 molecules, into the microscopic finger-like projections called "villi", where the B12 goes into a tiny capillary within each "villus", leading to getting the B12 into the bloodstream, and eventually into storage areas in the liver.

You found this great website here, so don't give up!

Carol
concerned lady
http://cantbreathesuspectvcd.com

FWIW, my B12 is tested regularly and my results have come back high from supplementation. That said, people still advise me that I am probably suffering from "gluten sensitivity" and thats causing my pain. I really hear this so much that I now turn a deaf ear to it. Damaged nerves, compressed or otherwise, hurt.

Sign me a frustrated person in pain.

Going gluten free to try it out & see if it helps, seems to be no big deal.
you adjust your diet & shopping list accordingly for a month or three
and see if it helps. No-brainer!!

I went gluten free, and had all kinds of bloodtests and finally a bowel biopsy and they were all negative. Oh well....my gremlin seems to be from something other than wheat. No, not a wheat gremlin.....I have a particularly nasty unknown gremlin who jabs me all over. Worst is at the wrist I broke....the thigh as well, sometimes the foot, the head, eh, all over.

I recently had a cortisone shot in the wrist and the gremilin there is quiet, for now....wait til this wears off, he will be meaner than......I picture him all bundled in duct tape right now, just furiously fighting to get free to poke again.

On the cortisone, they did it to see if it calmed carpal tunnel which I tested negative for, and it did. This issue is worst at nite with numbness of thumb, index and middle finger....I thought for sure it would be CPS, but it isn't....however, why did the shot totally alleivate symptoms? I wonder how this connects to my autoimmune disease?

I get cortisone shots all the time to calm angry nerves in my neck and head and it does work for awhile. Enjoy the break while it lasts

I agree with your approach, but my frustration stems from too many people thinking this is a cure all. I seem to be venting about my local folks here. There is a long list of symptoms associated with GS and there can be a lot of problems stemming from going gluten free if its really not indicated. There are also basic tests Dr. can run to check for it as well.