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Yikes!
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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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    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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