celiac3270

I wrote my e-mail to the Vatican.....just don't want to share it because I was.... rather scathing at times and I don't want to offend anyone.

Kathy, I accept that it's probably okay, but it irks me that even a little bit of gluten is necessary for the communion to be valid. It doesn't seem practical.

I still don't think I would try them again.

I know. Even if I could have oats, I feel like I am doing fine with a gluten-free, oat-free diet....why take the risk if I don't really need oats anyway?

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Good idea, Scott! I bet we'll see a flood of newbie postings over the next few days

Very cute..the only problem I noticed is that the shirts and patches for gluten-free say no wheat rye barley, but don't mention oats! Cute idea though! Vanessa

Relatively recent studies have showed that oats are safe for celiacs (unless they have an additional problem to oats, that is) provided that the oats are not contaminated. McCanns, after dealing with a contamination problem, are said to be the most reliable gluten-free oat.

The point is, though, the structure of the oat is not problematic as is that of wheat, rye, and barley.

I'm so sorry to hear that. I bet I'm 100 times worse when it comes to paranoia about the diet and I don't usually have to deal with much....criticizing or joking about it. My family realizes that this is....I guess you could say, natural after spending 8 years (or 57% of my current life) in pain.

You're not crazy. They just don't get it. Nobody gets it unless they've been through it--unless they're the ones with constant symptoms, unless they're the ones who know how painstakingly careful you have to be with this diet, unless they're the ones at risk for all these other terrible complications if they don't strictly adhere to the diet. Nobody understands it except for you and all the other diagnosed (or who think they have celiac disease), symptomatic celiacs.

And the thing about separate spatulas is 1000% valid. I would do the same thing and any celiac should make such a request. And about gluten and forks--that's another example of a practice that should be followed by all celiacs, even those who aren't as paranoid. I consider both those ideas to be nearly as elementary as don't put gluten-free bread in the contaminated toaster.

You're right, they don't understand. Stick with it.

Caramel coloring is questionable. From celiac.com:

3) The problem with caramel color is it may or may not contain gluten depending on how it is manufactured. In the USA caramel color must conform with the FDA standard of identity from 21CFR CH.1. This statute says: "the color additive caramel is the dark-brown liquid or solid material resulting from the carefully controlled heat treatment of the following food-grade carbohydrates: Dextrose (corn sugar), invert sugar, lactose (milk sugar), malt syrup (usually from barley malt), molasses (from cane), starch hydrolysates and fractions thereof (can include wheat), sucrose (cane or beet)." Also, acids, alkalis and salts are listed as additives which may be employed to assist the caramelization process.

This research is about getting more of the gliadin out of processed foods for testing -- since the current procedures apparently only extract 44%, that would mean tested foods (as a whole, not raw ingredients) would generally have (over) double the amount found by ELISA testing!

Also, the new test can find the proteins from rye and barley!

=============

Eur J Gastroenterol Hepatol. 2005 May;17(5):529-39.

Development of a general procedure for complete extraction of

gliadins for heat processed and unheated foods.

Garcia E, Llorente M, Hernando A, Kieffer R, Wieser H, Mendez E.

OBJECTIVES: In the past, one of the major problems in gluten analysis

has been the unavailability of an efficient, universal, extraction

procedure of gliadins - the alcohol-soluble proteins of gluten - from

both heat processed and unprocessed products. This study was designed

to develop a universal, extraction procedure capable of extracting

the totality of gliadins from both unprocessed and heat processed

foods for coeliac patients. METHODS: A simple quantitative extraction

solution containing 250 mM 2-mercaptoethanol and 2 M guanidine

hydrochloride ('cocktail'), was developed to extract gliadins from

heated foods. RESULTS: The diluted reducing and disaggregating agents

reaching the micro plate at low concentration do not affect the ELISA

system based on the R5 monoclonal antibody. The recovery of gliadins

extracted by the cocktail from spiked samples was nearly complete,

with an average mean value of 95.5%, which is clearly superior to

44.4% obtained with conventional 60% aqueous ethanol. The cocktail

always yielded either slightly similar or higher values than 60%

aqueous ethanol depending on the type of foods: 1.1-fold in unheated

foods, 1.4-fold in wheat starches and 3.0-fold in heated foods. False

positives or negatives were never observed using the cocktail

solution. CONCLUSION: We present a general complete gliadin

extraction procedure based on reducing and disaggregating agents for

both heated and unheated foods as a crucial tool for gliadin

analysis. The new extraction solution is used for corresponding

proteins from rye (secalins) and barley (hordeins). The cocktail was

employed as the extraction method in the international ring trial

evaluation of sandwich R5-ELISA as proposed by the Codex Alimentarius

and organized by the Working Group on Prolamin Analysis and Toxicity.

Arq Neuropsiquiatr. 2004 Dec;62(4):969-72. Epub 2004 Dec 15.

Neurological manifestations of celiac disease.

Siqueira Neto JI, Costa AC, Magalhaes FG, Silva GS.

Department of Internal Medicine, Federal University of Ceara, Fortaleza, CE, Brazil.

Celiac disease (celiac disease/ Nontropicalsprue, gluten-sensitive enteropathy) is a malabsortive condition in which an allergic reaction to the cereal grain-protein gluten (present in wheat, rye and barley) causes small intestine mucosal injury. The onset is in the first four decades of life, with a female to male ratio of 2:1. It may be associated with a wide spectrum of neurological manifestations including cerebellar ataxia, epileptic seizures, dementia, neuropathy, myopathy and multifocal leucoencephalopathy. We report three patients with neurological manifestations related with celiac disease: one with cerebellar ataxia, one with epilepsy and one with cognitive impairment. The diagnosis of celiac disease was confirmed by serologic tests (antiendomysial and antigliadin antibodies) and biopsy of the small intestine. In two patients the neurological symptoms preceded the gastrointestinal abnormalities and in all of them gluten restriction failed to improve the neurological disability. CONCLUSION: celiac disease should be ruled out in the differential diagnosis of neurological dysfunction of unknown cause, including ataxia, epilepsy and dementia. A gluten free diet, the mainstay of treatment, failed to improve the neurological disability.

Curr Treat Options Neurol. 2005 Jan;7(1):43-48.

Peripheral Neuropathy and Celiac Disease.

Chin RL, Latov N.

Weill Medical College of Cornell University, Department of Neurology and Neuroscience, Peripheral Neuropathy Center, 635 Madison Avenue 4th Floor, New York, NY 10022, USA.

Peripheral neuropathy (PN) is one of the most frequently reported neurologic manifestations associated with celiac disease (celiac disease), a multigenetic, T-cell-mediated autoimmune disorder that results from a loss of tolerance to gluten. Sensory axonal and small fiber sensory polyneuropathies are the most frequently reported PN subtypes. Multifocal motor or sensorimotor neuropathies and a more fulminant neuropathy, associated with ataxia and other neurologic manifestations, also have been reported. The effect of a gluten-free diet on celiac disease-associated PN has not been studied systematically or prospectively; nevertheless, a gluten-free diet currently is the cornerstone of therapy. Although idiopathic ataxia associated with anti-gliadin antibodies and other neurologic complications have been reported to respond to this diet; there is data that indicate that neurologic manifestations may develop or persist, independent of gluten exposure. There is evidence to suggest that inflammatory processes may be involved. Immunomodulatory agents (such as intravenous immunoglobulin or infliximab), described to be beneficial in the treatment of refractory celiac disease or celiac disease-associated ataxia, may have a role in the management of celiac disease-associated PN.

PMID: 15610706 [PubMed - as supplied by publisher]

Yes....Ian, I exerienced a similar problem with deodorant recently that I hadn't had before. I used some Gilette deodorant and it burned for about 2 hours after....the next day it did the same thing. I didn't see any obvious gluten in it, but I'll go back to my old brand

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reference made to the gluten-free bakery in whole foods.

Biopsies are a pretty regular occurence after positive bloodwork. The biopsy will usually show either complete damage to the villi (where all the samples come back as positive), patchy damage (some samples showing villous atrophy, some not), or no damage, which could be the result of taking samples from all the areas that were not damaged. With positive bloodwork, though, a negative biopsy should not be taken too seriously. It could be due to a number of factors.

Don't start the gluten-free diet until after all testing is complete--you don't want a false negative.

Fortunately, when I had to stay about 5 days at the hospital, it was Columbia Presybterian, also home to the largest celiac program in the US, so they knew what they were doing.

I got gluten-free bread, Jello, a kozy shack gelatin thing that had "GLUTEN FREE" on the label...uhh...a cup of hot water with a HerbOx....mix thing to put in it, also gluten-free.

Definitely complain, though.

Coca-Cola will e-mail you their gluten-free list, which does include regular Coca-Cola, diet, diet and caffeine-free coke, caffeine-free coke, sprite, etc. EVERYTHING SOFTDRINK MADE BY PEPSI CO. IS gluten-free. It could be a problem with the carbonation

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I asked because the tests under the celiac panel hold different....weight w/ a pos. or neg. reaction...with one test a positive might be nearly definite and with another, it might still make celiac disease questionable.

Endoscopies can easily get false negatives but have very reliable positives. I'd go gluten-free on that.

Yes......quite often, someone from a health food store will try to convince you that spelt is okay for celiacs. It is a form of wheat and definitely is not.

Did you purposely cheat or was it the absent-minded thing? I've done that type of thing before (when I started the diet). I found myself just naturally gravitating towards food.....which was, 90% of the time, something I couldn't....I would usually catch myself just in time. Many people in the beginning, if making non-gluten-free pasta for the rest of the family, might try one noodle to see if it's cooked--that type of thing.

Don't worry--I did that sort of thing once or twice and came close to doing it countless times. Eating is something non-celiacs do mindlessly. All you need to do is adjust your habits--this will come naturally--so that you always think before picking up any piece of food.

There definitely can be for a few reasons: If you don't eat gluten for at least 3 months before testing, if you're IgA deficient, if the lab messes up, etc. It's definitely possible. Prometheus is a good lab to send the blood to. And some people just test negative but respond very well to a gluten-free diet....or get a negative blood, but positive Enterolab result.

What blood tests were run?

I know that it all has a chance, but then you could also say that there's a chance for cross-contamination is you touch anything that has been touched by a person who has eaten gluten....a keyboard, telephone, etc. I think things that get close to your mouth or very easily on your hands, such as sunscreen are more important to check than this.

Here's a good explanation from Richard (lovegrov) in another post:

There are several reasons for this although I am not a science type guy so my explanation won't be complete.

The patch medications that you can absorb through your skin are specifically engineered and manufactured to be absorbed. Think about it, you don't just run aspirin on your skin to get rid of a headache or antibiotic on your skin to take care of an infection. That's because you can't absorb just anything through your skin. And not even all medications can be engineered to do that, otherwise we'd be taking all our medications that way. Simple and painless.

Your skin has an inner barrier to keep most things from being absorbed. If just anything could be absorbed you couldn't ever go swimming because you'd blow up like a balloon from all that water pouring in. Or you'd suck up every bacteria or poison in the air. Even skin moisturizers aren't getting sucked into the core of your body; they're just mositurizing the outside layer.

Gluten molecules are too large to pass through this barrier, hence you don't absorb gluten through your skin. You can most certainly have a topical ALLERGIC reaction, though.

I don't worry about whether deodorant has gluten because it's hard for me to imagine it getting to my mouth. I don't lick my armpits, sticks my hands in there, or pick up food with them.

richard

I've never tried them, but Kinnikinick makes donuts that seem to be the most popular.

Spelt is not gluten-free . It is a form of wheat.

It's not a silly question....there are no such things as silly questions here since many of us started out not knowing what celiac disease or gluten was in the first place.

Stuff in your supermarket almost always will not mention that it's suitable for celiacs...you need to call to ask on most things. In the case of corn flour, however, being that it only has that one ingredient (corn), it is gluten-free.

Umm....does he have a skin reaction or get sick? Deodorant shouldn't be a problem (besides w/ a skin reaction) since it shouldn't get digested, thus doing damage to the villi.