Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Yikes!


penguin

Recommended Posts

penguin Community Regular

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:<_<:(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rinne Apprentice

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

Jestgar Rising Star

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.....

eKatherine Apprentice

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?

phakephur Apprentice

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.

phakephur Apprentice
here is the article
penguin Community Regular

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Nancym Enthusiast
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.

ms-sillyak-screwed Enthusiast

Can you post the paper this article is in?

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

penguin Community Regular
Can you post the paper this article is in?

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

Sure Open Original Shared Link

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

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    2. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    3. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,844
    • Most Online (within 30 mins)
      7,748

    donnawebb265
    Newest Member
    donnawebb265
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.