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Celiac Disease Often Mis-Diagnosed - Ozarks First


Scott Adams

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Scott Adams Grand Master

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Ozarks First

Celiac Disease causes people to have an intolerance for gluten....which means they can't eat anything made with wheat, rye or barley. ...

Open Original Shared Link Baltimore Sun

Open Original Shared Link Fall River Herald News

Open Original Shared Link Dunn County News

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bbuster Explorer

I just happened to catch the broadcast on our local morning news. I thought they did a nice job.

sunnybabi1986 Contributor

I liked the story, but I was irritated by one part, at the end, where she said, "I can't have bread or cookies anymore, but at least I feel better."

This just makes me so mad because it's so untrue. There are some wonderful gluten free breads and cookies out there, and now the general public believes that people with celiac are doomed forever with a diet with no bread or cookies. It's just not true. I have yet to find anything that I couldn't eat before, the food just has to be made with different ingredients.

Sorry, just my little vent. I feel like most people know so little about celiac, and putting this kind of information out there is not helping people understand celiac very well. There was some good information in the story, but this kind of popped out to me and made me upset. :(

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    1. - trents replied to barb simkin's topic in Related Issues & Disorders
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      celiac, chocolate and alcohol

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      celiac, chocolate and alcohol

    3. - trents replied to barb simkin's topic in Related Issues & Disorders
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    4. - barb simkin replied to barb simkin's topic in Related Issues & Disorders
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    • trents
      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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