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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.