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This was sent out over my local listserv:

Gluten-free group assists those with new or old diagnoses

By Elizabeth York

Photo by Gary Rhodes

Odessa American

MIDLAND Around lunchtime, more than a dozen people sit at a long table in the screened porch area at Johnny Carino’s restaurant in Midland.

A woman pulls out a pan of homemade sliced bread and passes it to the person beside her. A man pours a bag of tortilla chips into the restaurant’s cloth-lined bread basket. A woman at the head of the table pulls out a bag of pasta and passes it to the waitress.

The chatting group might look a bit quirky to outsiders, but the special measures they take to avoid gluten at mealtimes have become a way of life.

Members of the West Texas Gluten-Free Awareness Support Group met recently to give comfort, guidance and companionship to one another.

Buddy Tittle of Gardendale was at the table with his wife, Pam. Tittle learned he had colitis and celiac disease in February after being hospitalized for severe headaches. The diagnosis came after the retiree went from weighing 165 pounds to 147 pounds in two years.

The 66-year-old said his recent diagnosis is difficult to handle.

“It’s a challenge — especially going out to eat,” Tittle said.

Tittle, and others with celiac disease, can’t eat foods with gluten. That precludes traditional burger buns, cakes, breads and a myriad of other food items.

“Cold beer was probably the worst,” Tittle said. “I love my cold beer in the afternoon.”

On the up side, Tittle can still eat salad, steak, potatoes and beans, he said. At the Italian restaurant, he ate a brown rice pasta brought by group secretary Barbara Williams.

Williams has known she has celiac disease for the past 27 years. During that time, alternative products like potato flour, rice pasta and gluten-free breads have become more tasty and more readily available, Williams said. Health food stores are the best place to find the products, she said.

Chain supermarkets and restaurants generally haven’t come around to carrying gluten-free products, Odessan Tiffany Fambro said.

Fambro’s mother, Tammy Fambro, and grandmother, Mary Fambro, both have celiac disease.

In a recent dining experience, Mary Fambro became ill after her omelet was cooked on the same surface as items with wheat flour.

“They think it’s the Atkins diet,” Tiffany Fambro said. “They don’t realize (gluten) could send these people to the hospital.”

Odessan Virginia Donaldson suffered from celiac disease for 10 years.

A month ago, Dr. Udipi Prabhakar Rao performed a blood test on Donaldson. He found that, at 81, her celiac allergy was gone for the time being.“It’s wonderful to be able to eat bread again,” Donaldson said. “It’s a wonderful relief.”

Rao said that Donaldson’s case is rare for most people with celiac disease.

“If they’re not exposed to gluten for a long time, antibodies disappear from the blood stream,” Rao said. “The immune system can go into a state of remission.”

After ingesting gluten for a time, however, it is likely for the gluten antibodies to form again, Rao said.

:blink::o:huh:<_<:(

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Yikes is right, what a depressing and misleading piece of writing.

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I did read one research paper in which one woman who had been gluten-free for more than 10 years slowly re-introduced gluten with her doctors checking her Ab levels and (I think) villi. They found that she did NOT produce antibodies to gliadin. So it is possible.....

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Well, I'd have thought that if they were able to make a debilitating illness go into remission, they probably ought to want to keep it that way. Is he going to monitor her progress or wait til she's half dead and then give her another biopsy to see how she's doing?

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The abstract for that woman who reintroduced gluten was posted on this site. I was trying to find it but the links off of site index are broken. I believe it was in Feb. 2006 research section.

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It's certainly interesting, but I don't think that study means anything, mainly because they had one sample. Not even a control person. If they are able to complete such a study on a broader scale of celiacs, then that would be great. Also, what happened after 18 mos? 24 mos? 36 mos? Does the bacteria repopulate eventually?

Something to be on the lookout for, anyway. It's certainly not wise for ANY doctor to advise their patients to go back on a gluten-free diet (outside of a very controlled study, anyway) and even the researcher didn't suggest that the woman was cured.

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I did read one research paper in which one woman who had been gluten-free for more than 10 years slowly re-introduced gluten with her doctors checking her Ab levels and (I think) villi. They found that she did NOT produce antibodies to gliadin. So it is possible.....

It doesn't show up in your blood until quite late in the progression of the disease. So unless they were checking her intestines for antibodies they probably don't have an accurate reading.

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Can you post the paper this article is in?

I would like to write and BLAST them for mis information about celiac disease.

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Can you post the paper this article is in?

I would like to write and BLAST them for mis information about celiac disease.

Sure http://www.oaoa.com/

Be gentle, though, we're trying to educate. :)

Also, it was the dr., not the journalist, that suggested the woman go off the diet

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    • thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?
    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
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