I am the poster child for gluten intolerance caused neuropathy. I didn't know it 11 yrs ago (well, actually more than 11 yrs), yet neuropathy was one of my symptoms. I was suffering from malabsorption..I had gastro issues along with neuro issues. My sister had finally been diagnosed with celiac, and she talked me into going gluten free too. I had no insurance and no job at the time, so I couldn't afford to be tested. I have been gluten free for 10 yrs last month. There are many gluten intolerants whom have no symptom other than neuropathy...it's worth having the test, just to be sure, rule it out!


This is not always true. For some, the neuropathy goes away, which maybe they actually do not have neuropathy as of yet, just symptoms beginning. Some of us take years and years to heal, some never heal totally...yet sticking with the gluten is even worse when you have issues with it.

People with gluten issues have a 60% higher cheance of stomach cancers...this alone is one of the best reasons to be tested.

I can't agree with this totally either. Not all probiotics are created equal and many do more damage than good. I have never found one I could use. The best thing a person can do is to eat natural, whole foods, nothing processed, stay away from sugar, modified corn syrups, pure cane sugar and such. And for most with gluten intolerance, B12 is a must. At this time I am takiong 5000mcg daily of Jarrow B12, and my neuropathy is not progressing, it never went away, but stopping the progression is good too.

Dear Darlindeb,

Thanks for replying! I remember you, from the old days!

All good points you've made, about how each person is very unique!

By the way, I've learned that some people who are "sensitive" to milk proteins, can sometimes develop a Celiac-like condition, including with damage to their small-intestinal villi, that is pretty much identical to the damage seen in those having Celiac Disease!

And, people with gluten sensitivity who keep eating gluten, (and maybe also those who have a milk protein sensitivity and who keep eating or drinking milk proteins), can develop auto immune damage to any one or more of these areas in the body:
-- nerves, causing neuropathies
-- thyroid gland, causing either over or under-active thyroid conditions
-- pancreas (affecting production of digestive enzymes &/or production of insulin, leading to diabetes),
-- joints (causing rheumatoid arthritis), brain (causing seizures &/or foot dragging, etc.),
-- skin (causing an itchy rash such as dermatitis herpetiformis)
--etc.

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Dr. Kenneth Fine's "EnteroLab"'s (very reliable)non-invasive stool sample testing includes any one or more of tests (each person's choice) for sensitivity to these "proteins":

GLUTEN (in wheat, rye, barley, spelt, kamut, etc.)--and rice is gluten-free (if not "cross contaminated" with gluten, at packaging plants). Some gluten-sensitive people can eat rice, while others need to go grain-free completely. This varies from patient to patient. Brown rice (whole grain, natural rice) that is organic, is more nutritious than denatured white rice.

Good health food stores have gluten-free tortilla shells available (like Food for Life brand, etc.), brown rice pastas like Tinkyada, etc., that taste delicious, and there are gluten-free bakeries all over the place, that make delicious gluten-free breads, desserts, etc.

MILK PROTEINS (in milk, yogurt, cheese, pizza, cheesecake, ice cream, butter, etc.). For those who can't live without butter, there's "ghee" (clarified butter, where the milk proteins have been removed), available at health food stores. For many, organic olive oil, etc. substitutes well for butter.

SOY PROTEINS (found in soy-"milk", soybeans, etc.--read labels)

YEAST PROTEINS (yeast protein-sensitivity has been associated with Crohn's Disease in some people)

EGG PROTEINS.

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Some are 'sensitive' to CORN proteins, and I think Dr. Fine is working on making a corn protein sensitivity stool sample test.

Anyone interested in calling EnteroLab (besides looking at www.finerhealth.com) can call them in Dallas, TX, at 972-686-6869.

Dr. Fine says that an alternative (free) way of seeing whether a person is gluten sensitive or not, is to seriously avoid gluten for 3 months, and see if symptoms improve (or see if symptoms don't get worse, as you said, Darlindeb!).

"Oats" are controversial. Most oats are cross contaminated with gluten, at packaging plants. Gluten-free (at least "tested" to be) oats are available at health food stores, but some are "sensitive" to oat proteins, so many believe it's best to avoid oats, to be on the safe side.

Some gluten-free people are OK with millet, tef (an Ethiopian gluten-free grain), and even corn, but others have to avoid all of these grains.

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Thank you for sharing what helps you, including the Jarrow Vitamin B12! I use KAL brand, and it helps too!

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Avoiding acid blockers, is also helpful, when possible, since acid blockers prevent the production of Intrinsic Factor (I.F.) molecules, by the stomach, where these I.F. molecules would have normally "facilitated" small intestinal absorption of Vitamin B12 molecules, in the ileum (last third of the small intestine--thank you Rose for this info!).

By not taking acid blockers, and if the stomach is making enough hydrochloric acid (HCl), the stomach is "allowed" to produce the needed I.F. molecules, which then escort B12 molecules to the ileum, and help the B12 molecules to be absorbed into the microscopic villi.

Peripheral neuropathy forums include MANY people having PN (peripheral neuropathies) whose peripheral neuropathies are at least partly due to being on all these acid blockers, that are making fortunes for drug companies, while hurting patients' nerves!

Good luck to all!

Carol
Concerned lady
http://cantbreathesuspectvcd.com

I spoke by phone, with the writer of the article that quoted the 10 person "study", that concluded that going gluten-free could hurt one's count of their own probiotics (acidophilus, bifidus, etc.).

The writer of that article in HealthNews.com is Lara Endreszl (in the San Francisco Bay area). She sounded like a nice lady, but seemed to know very little about gluten sensitivity. She was not aware that there is such a thing as non-Celiac gluten sensitivity, and she also didn't know very much about peripheral neuropathy (when I asked).

She used to be a staff writer for an online health magazine called HealthNews.com but she hasn't worked there since the beginning of 2010. HealthNews.com has no phone number in their website to call, and when I tried to register so I could "contact" them, they never sent me a password! They are a mysterious group, that I now suspect may be related to either insurance companies &/or drug companies!

Lara now works for a mental health (behavioral health) division (called Optum Health) of an umbrella group (based in Twin Cities, MN) called UnitedHealth Group.

Also owned by the umbrella group UnitedHealth Group, is, a big HEALTH INSURANCE COMPANY called United Healthcare! (very expensive health insurance company...).

I asked Lara to please read Dr. Kenneth Fine's "EnteroLab" website, at www.finerhealth.com so she could learn more about non-Celiac gluten sensitivity. I won't hold my breath, but I hope she does.

So, my moral of this story, is to not believe everything that's in print (including what I say) right away, just because it's in some "health"-looking website. Check up on everything, to be sure there's not some motivation that we wouldn't have know about otherwise.

One example of this, is the "Ad Council", that is mentioned on so many radio ads. I checked into who exactly is on the board of the "Ad Council", and was sad to see a significantly big number of BIG PHARMA reps!

I'm still waiting for a reply from one of the "scientists" I emailed, who supposedly did that 10 person "study" showing how supposedly bad it is to eat gluten-free, if not a Celiac patient. I'll report back, if I get a reply.

Carol
concerned lady
http://cantbreathesuspectvcd.com