• Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


Rate this topic

10 posts in this topic

Recommended Posts

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.


Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

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.....

Share this post

Link to post
Share on other sites

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?

Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites
Ads by Google:

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.

Share this post

Link to post
Share on other sites

Ads by Google:

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.

Share this post

Link to post
Share on other sites
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

Share this post

Link to post
Share on other sites

Ads by Google:

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Victoria Zoey
  • Popular Now

  • Topics

  • Posts

    • Thank you all for your great suggestions! Will take all of it on board
    • Dairy is a major issue with celiac, due to the enzymes to break it down being produced by the villi tips being mostly destroyed or damaged first. Eliminating for a few months may be critical. I might suggest digestive enzymes, I am taking Jarrow Enzymes at 2x the dose, Jarrow Bromelain, and sometimes some extra papaya enzymes. I have issues breaking down the large amounts of foods I consume otherwise (I am trying to body build bulk). I also would look at some protein powders if I was you. Vegan protein powders are easy to digest most times an can be great. Pumpkin Seed protein is the easiest on the stomach, being a balanced PH, high in zinc, iron, magnesium, it is very good for recovery and putting on weight in addition to others. Might also consider blends, try not to get anything with too much gums in it. I like NutraKey V-Pro and MRM Veggie Elite. I also buy a whole list of others. On her food, veggies, and meats should be cooked to almost mush, try using a crockpot and stewing them. This will make them easier to digest and break down.
      Is she having any other issues? Like Bowl issues? I find I can loose hunger if I back up, and I have to take magnesium like crazy and eat a whole lot of fiber to keep it moving. Take it you already read the newbie 101 section about getting all new cookware, and deconing the house? Bit of a extra tip I swear by to everyone, Freezer Paper/Butcher Paper. Makes a nice clean prep surface and easy clean up.
    • Hi Kirsty, Gluten messes me up in a lot of different ways, some of which I recognise in your first list. You can find a massive list of symptoms associated with celiac here: https://glutenfreeworks.com/gluten-disorders/symptom-guide/ and it may be that some of your other symptoms can be found there. It's also worth searching this forum as it's been going for a long time, in internet years at least.  It certainly messed with my blood sugar and like you I'd take tests which didn't reach the extreme values, but that didn't stop the symptoms. The only way I realised this was when I removed it from my diet, for other reasons and found that a load of different other symptoms also resolved.  After this happened I then went back on to gluten for a test, a gluten challenge. My symptoms came back, but my blood test and endoscopy were negative for celiac. My consultant told me to avoid gluten for life.  In your case you need to decide whether to push for more celiac testing or not. If not, please consider fully excluding gluten. My own experience is that it's not something that you can have a little of and get a health benefit, you are still engaging your auto immune system. Obviously if you're experiencing extreme symptoms when you remove it you should do it in consultation with your doctor, but maybe if you could just get through those difficult first few days you may experience relief from some of your symptoms? Best of luck matt    
    • So... his gp did a genetic test - positive - and has referred him to a gi. His paed and diabetes educator have ordered the genetic test and another coeliac screen for 3 months and then they will decide if he needs to see a specialist because they're still convinced its most likely a false positive. Why test at diagnosis of diabetes if they don't believe the results anyway? Why is this disease so confusing for the medical world?  Anyway we're sticking with the gp and hopefully it won't be too long before he gets into a gi.  It seems that blood tests don't matter in any situation. If they can find any excuse to invalidate them they jump at it.  Makes me so infuriated I just laugh about how I already seem to know more. 
    • Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it. She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on glutenfreedrugs.com (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was.   
  • Upcoming Events