As far as abnormal sensations, pains, pin pricks etc, do you all experience these while actually sleeping, or do they disappear during sleep and appear upon awakening?

I saw this movie years ago and it really scared the hell out of me! They are doing a remake?! Look under the bed before you put your feet down!

I remembered seeing a news blurb about this issue. I can't find the same one, but here is a link to a study which discusses the down side of GF diets when they aren't needed: http://www.healthnews.com/nutrition-...diet-3288.html

--I'd love to see the original study, see if it was double blinded, see who was tested and what other conditions they had, etc.

All I can say anecdotally is that there is no single food source that I've ever found evidence is ABSOLUTELY needed by people. We all need carbs, fats, protein, vitamins, fluids, etc.--but there are so many sources that any of these can come from.

Sorry, I went to the Cambridge Journals site and can't access it without a paid membership. The other study I saw was a US study and also came up with similar results regarding the lack of probiotics. I don't care to debate this with you as its not my intent. I'm venting over people saying its the answer to all of my pain issues, which in reality it isn't. I don't have any symptoms of celiac disease and I don't see any point in cutting gluten out of my diet. If I do locate the US study, I'll post it for you.

Dear EEO3,

You wrote: "I don't have any symptoms of celiac disease and I don't see any point in cutting gluten out of my diet."

You may find it interesting to know that most people who have gluten sensitivities DON'T have Celiac Disease! Most gluten sensitivity is NON-CELIAC! In fact, only about 1% of people, in general, have Celiac Disease, where, anywhere between 33% and 66% of people may have some kind of non-Celiac types of gluten sensitivity. That's huge!

A helpful website that talks about this in detail, is Dr. Kenneth Fine's "EnteroLab" website, at this link:
www.finerhealth.com

Dr. Fine, M.D., is a Dallas, Texas gastroenterologist, who Cara and Mrs. Doubtfyre originally told us about, on a peripheral neuropathy (PN) forum, back at the Mass. General PN forum, years ago.

Dr. Fine himself, suffered for many years (in his youth) with various food protein "sensitivities", and finally found that he was "sensitive" to gluten, milk proteins, etc.

Dr. Fine's ("EnteroLab") STOOL SAMPLE (NON-INVASIVE) TESTING, is much more reliable than blood testing, and even endoscopic biopsies, for these reasons:j

1) The large intestine (colon/gut) is where antibodies to gluten are made, in people who are "sensitive" to gluten. These are "IgA" type antibodies (different from "allergy" IgE antibodies).

Stool itself, is also made in the large intestine, so stool picks up abnormally large numbers of antibodies to gluten, in those people who are gluten sensitive.

But, most of these IgA antibodies stay in the large intestine, and don't escape into the bloodstream, so blood tests for these antibodies to gluten, are notoriously false negative!

2) People having non-Celiac types of gluten sensitivity, may have indigestion and mal-absorption in their SMALL intestines (similar to those with Celiac Disease), but the "villi" (microscopic finger-like projections in the small intestine) don't obviously show the damage, the way the villi show damage in those with Celiac Disease, when a biopsy is viewed under a microscope.

Dr. Fine explains that in non-Celiacs, these gluten-sensitive people may have SUB-MICROSCOPIC DAMAGE to their small intestines, which is NOT VISIBLE under a microscope, yet still causes problems with the functionning of their small intestines, due to an auto-immune attack to their small intestines.

3) In non-Celiacs, as well as in Celiac types of gluten sensitivity, "mal-absorption" of Vitamin B-12, etc., causes NERVE DAMAGE, such as peripheral neuropathies!

When gluten sensitive people stop eating gluten, their small intestines are able to heal, and thereby are able to again absorb the vital nerve-nourishing nutrients once more, allowing them to heal their damaged nerves!

Taking "sub-lingual" Vitamin B12, also helps, by bypassing the damaged digestive system. Sub-lingual (under the tongue) B12 is as effective as taking "shots" of B12.

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I agree with Glenntaj, 100%, on everything Glenntaj said.

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My own hubby has a non-Celiac gluten sensitivity, discovered years ago, by taking Dr. Fine's "EnteroLab" stool sample testing.

I get no kickback from Dr. Fine. Too bad..I could've retired by now!

I myself had/have a peripheral neuropathy that is greatly helped by taking sublingual Vitamin B12, in the "methyl" cobal amin form (works better than the "cyano" cobal amin form. I suspect my PN was due to low stomach acid. (by the way, scads of people taking ACID BLOCKERS now are suffering from peripheral neuropathies, because acid blockers prevent absorption of Vit. B12)

I learned about the "methyl" form of B12, from Rose, Cara, and Mrs. Doubtfyre, back on that Mass. Gen'l Peripheral Neuropathy forum, before I joined this good forum.

If you or anyone is interested in finding out whether you are low in your Vitamin B12 liver stores, here are 3 tests that Rose said should be taken (blood tests, all done in the same one needle stick):

1) Vitamin B12 blood level test (will show low value, if you are Vit. B12 deficient), and

2) MMA/Methyl Malonic Acid blood level test (shows an "elevated" result, when one is B12 deficient), and,

3) Hcy/Homocysteine blood level test (shows "elevated" result, when one is B12 deficient).

Good luck to you and everyone!

Carol
Concerned lady
http://cantbreathesuspectvcd.com

Here's a link to an abstract of that "study" of, would you believe, TEN "healthy" people, whose counts of probiotics in their "guts" decreased, while they were eating gluten-free. (I wonder how healthily or un-healthily they ate, while going gluten-free!)

http://journals.cambridge.org/action...ne&aid=6371220

Here's an easy solution to that problem:

While going gluten-free, take milk-free PROBIOTICS (acidophilus, bifidus, etc.), preferably without FOS's (fructo-oligo-saccharides), which (the FOS's)feed not only the beneficial bacteria/probiotics, but also feed bad bacteria, leading to digestive disturbances, reflux, etc.

I also have included some "tips" that I've learned over the years, from Cara and others, about how to painlessly go gluten-free, without any adverse health effects at all! See webpage 10 of my website, for links to gluten-free websites, and this includes this wonderful forum here... 'Neurotalk' !

Carol
Concerned Lady
http://cantbreathesuspectvcd.com

I wrote this to one of the scientists who did the 'study', and I'll report back, if and when I get a reply:

Dear Dr. Sanz,

Regarding your study, please tell me what exactly did the 10 healthy people eat and drink, when still eating gluten, and what exactly did they eat and drink, while eating gluten-free, for that one month? In other words, how exactly did their gluten-free diets differ from their glutenous diets?

I'm referring to the abstract of your study, at this link:
http://journals.cambridge.org/action...ne&aid=6371220

Thank you in advance!

Sincerely,

Carol

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I'm wondering if when they ate gluten-free, that they may also have been going milk-free too, and then, they may not have been nourishing their own probiotics (probiotic bacteria like to eat milk sugar/lactose).

Also, grains may have probiotic bacteria living on them, naturally, so if they avoided all grains, it could explain why their probiotic counts decreased.

However, in any case, taking probiotics can solve that problem.

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