ENF

We saw a TV commercial for Dietz & Watson, and it ended by saying that their cold cuts are trans-fat free and gluten-free.

This was the first time we've heard the phrase in a TV advertisement!

My understanding, and this has been discussed at length here some time ago, is that celiac is a disqualifying condition. You don't get into the military, and if you are already there, you get an immediate medical discharge.

Jail food, hmm, I guess if you wait long enough every possible topic will come up on this discussion forum...

I wonder if they'd make gluten-free SOS?

Used to. A lot before going seriously 100% gluten-free. Worst ones faded quickly, lesser ones w/in 2-3 months, I'd guess.

There was peripheral neuropathy where for example I might suddenly feel like I'd stepped on tack, tho I was lying down. Weird things that could happen to any part of the body - not just feet or extremities.

There was cerebellar ataxia, where I literally could not take a step w/out stumbling.

Migraines, long bouts of vertigo, etc.

Most people seem to have a brain fog and general lack of ability to concentrate. Depression and anxiety are common.

I had a few more serious, but misconceptions make me reluctant to talk about them.

Tho it was all in addition to the usual GI issues - not sure if your "as opposed to" means "in place of".

I had many of these symptoms, and more. I also had the feeling that I stepped on a tack, even while lying down. It would usually get me in a toe and sometimes, including while I was standing up, this sharp pain would be duplicated at the same time in my forearm, wrist, or hand. It never bothered me much, and was not one of my worst symptoms, but seems to be happening with substantially less frequency, and less pain, since going gluten-free.

Edit: Three minutes after posting this, while sitting, I got the feeling on the bottom of my foot, rather than a toe. I think it happens a lot more than I even realize, 'cause I got used to it and don't pay attention anymore.

Had a question. Nevermind, I already figured it out by looking at past postings.

Tapioca starch does not usually contain gluten.

After avoiding oats for years, I just bought a box of gluten-fee oats, by Chateu Cream Hill Estates. The box contains a sheet titled, "Questionnaire - Pure, uncontaminated Oats in the Celiac Diet", and they ask that the customer fill it out and send it in. It consists of a number of questions regarding the celiac patient's symptoms, diagnosis, adherence to the gluten-free diet, age, whether the customer encountered any problems after consuming their oats, etc. This is a good company, because they care about their customers. There are also survey questions about other pure oats products that the customers would like to see in the future. I haven't tried them yet, but will do so tomorrow.

In fact, there have been people who had negative bloodwork, and don't have the two recognized celiac disease genes who were biopsied and had completely flattened villi. So, yes, it is very possible. But still, their genes are not considered celiac by the medical establishment (even though some are catching on).

That's very interesting. I've been wondering for a while if this were possible. Do you have the source of this information so that I can read it? Thanks!

Thank you for the explanation about genes and villi damage.

When I was a kid, we had mostly Silvercup and Wonder breads. In upstate New York, where I went in the summer, they had Friedhoffer products. Making a peanut butter and jelly sandwich without ripping the bread apart was an aquired skill. I do rember eating "Real" freshly baked rye bread, bagels, and other things that I souldn't have. I was undiagnosed than, but knew that this stuff was bad for my stomach - but not how bad, until later.

I agree that gluten is not good for anybody. Pills or no pills, I doubt that I would eat gluten again, either - but would probably eat out more often because at least I could take the pills on those occasions and be assured of not getting sick from cross-contamination. In a perfectly gluten-free world, of course, this would not be necessary. For now, I'd probably take the pills for insurance.

I thought that this was good news, and that the more companies that are doing research, the better off we are.

As someone with both celiac genes, and many years of being sick, in the case of this research I prefer to view the glass as half-full.

At the very least, the cross-contamination risks would be lessened for people with celiac when a vaccine is put on the market.

EDIT:

I don't think that this drug is a "vaccine" in the same sense as ones for rabies, smallpox, polio, etc. I believe that it's just something that allows digestion of gluten, and prevention of an autoimmune response, in people who do not have the necessary body substances to do it. The villi damage appears to be what they're trying to stop.

Do people that do not have at least one recognized celiac gene get villi damage? I doubt it, otherwise their gene(s) would be considered celiac.

I don't know if this has been posted before. This company, Nexpep, is starting clinical trials early in 2008 for a vaccine.

Developing a vaccine for celiac disease.. returning to a normal diet and good health

ABOUT US

Created to develop and commercialise the use of therapeutics and diagnostics, Nexpep works in celiac disease.

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I've never tried Chinese since going gluten-free, for some reason it makes me nervous. Have you called the restaurant and talked to the manager? You'll probably get a really good sense of how well they'll be able to accomodate you and if you feel at all not sure, go ahead and bring your own food. I do it all the time. Some days it's just too much effort to deal with waiters and managers and I prefer to eat my own.

Since posting my question yesterday, I've been giving this some thought.

I don't even know where we're going yet - but after dinner we're going to Carnegie Hall. This is not close enough to any of Manhattan's gluten-free Chinese restaruants.

So, I'm still considering rice, possibly plain chicken, steamed vegetables and maybe some of the sauces people here have suggested. It's a few weeks away, so I still have some time to figure out a strategy.

I doubt that the rice will be glutened - these places make huge vats of it daily and it is unlikely to have gluten contamination.

I'm sure that I won't be the first person to have food issues, wherever it's decided we're going. In NYC, restaurants are used to all kinds of different clienteles.

Thanks to everyone for the suggestions.

I'm planning to attend dinner at a Chinese restaurant with a group of people next month, before an event we're attending. Forget about asking to have it in a gluten-free place, that's not going to happen. I never eat out except in restaurants that have dedicated gluten free choices, and am considering either not going, or bringing my own food due to the possibility of cross-contamination. I do have the Triumph dining cards, but never had occasion to use them.. Has anybody had any success, or gotten sick, with just rice and steamed vegetables in a typical Chinese restaurant?

Cold-Eeze always works for me. .

Here's the abstract of a recently published article from the May 2007 International Journal of Paediatric Dentistry, Dental enamel defects in children with coeliac disease. The study was conducted in Holland.

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"Conclusion. This study showed significantly more specific enamel defects in Dutch children with coeliac disease as compared with children in the control group. Dentists could play an important role in recognizing patients with coeliac disease."

Has anyone noticed or heard anything about dental problems and celiac?

I've had numerous dental problems my whole life: crowns, bridges, extractions, root canals, bad gums, etc.

In one strange instance, thirty years ago, a lump grew in a spot where I had a tooth pulled, due to a Vitamin A deficiency, and I had to have that cut out by an oral surgeon.

All peritonitis

My wife and I each had all of the Enterolab tests for the gluten, soy, egg, casein, fecal fat and yeast. We sent the samples in separately, about a month apart, so that they couldn't have been mixed up. All of the positives and negatives were the same for both of us, with numbers that were very close as well. One of the genes was also the same for us. I had classic Celiac symptoms, very bad, and she had none.

P.S. we're not related, lol.

Hi Heidi,

I was just diagnosed myself about three months ago. It has been overwhelming, despite that fact that I have studied nutrition and cooking (on my own) for about ten years now. I guess I've always been trying to figure out what the heck was wrong with me and I knew food was related somehow.

I am in NYC and would love to talk. I've been looking for support groups and agree with your team concept. We're humans--cooperation is how we get things done. Maybe we could help each other find resources. I am vegan and my doctor doesn't think it's a great idea, but I am comitted to it. I'm just trying to learn how to make it work.

Good luck and please feel free to contact me if you'd like to meet up.

Warm regards,

Julie

New York City Celiac Disease Meetup Group

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Redbridge cost me 10 dollars for a six pack at a small immigrant-owned convenience store in Brooklyn. I'd never been in the store before, and the guy may have just made up the price.

Can anybody recommend a gluten free red wine? I don't know anything at all about wine, but I'd like to try something that's not expensive, easy to find in liquor stores, and is gluten free.

Thank you.

Gluten free weekend at the Greenmarket Cafe in Honhokus, New Jersey, this Friday and Saturday.

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Haven't been there yet, but the owner is a fantastic chef. He can cook anything, and specializes in organic, healthy food with an emphasis on vegitarian - although there are meat dishes available.

Greenmarket Cafe

190 Franklin Turnpike, Hohokus, New Jersey (07423) (at Maple Ave, near NYC)

201-652-7733

My mother died young because she didn't seek medical attention for a problem until it was too late.

We're all human, and both sexes make health-related mistakes of all kinds.

I have read that women are at least twice as likely to have celiac as men. That's a big difference in percentage.

There was a request on this message board a couple of years ago for a male celiac forum, in the fashion of other sub-forums here, but this suggestion was not accepted.

Browsing around on the forum, it looks like the majority (not all) of the posters are women. I read somewhere that 75% of the new cases of celiac reported are women.

Thoughts?

jonney (male)

I'd estimate that the percentage of postings by females on this board is probably 95% or more.

ENF

ENF: Your probably right about not being able to anything for us when we get contaminated. Percoset help eleviate the cramping but I don't know any doctor that would prescribe a narotic for prn use. Tee! Hee! I had some left over from my gall bladder surgery and was able to use one when I felt the cramps coming on. I know once they start I can't hardly swallow my own saliva let alone a pill.

Did you read somewhere that you should be retested or is this something you would like to do for peace of mind?

Drugs don't really help with glutening - at least the type of symptoms that I had.

As far as getting retested, I've had blood tests since going gluten-free, and the results have been negative - but I know that I've been glutened by BEANO, and the test didn't show any elevated antibodies, possibly it was too little to come out. That test was performed by my GP, not a gastroenterologist.

I would like to get another endoscope and biopsy to see if there is a noticeable improvement in the villi, since it was moderately bad when I first got one for Celiac. In Dr. Peter Green

Hi, I was wondering, after being off gluten for over 3 years, should I see a specialist when my symptoms reoccure? Such as with an accidental glutening? Does anyone on this board see a specialist for maintenance?

When I hit three years gluten-free, I'll probably get evaluated again by endoscopy, biopsy, bone density test, etc. As far as glutening, I don't think there is anything the doctors can do for you when this happens. I'm recovering from a bad bout of it myself right now.