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Mystery Diagosis

KarenCM

By KarenCM
in Publications & Publicity

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KarenCM Rookie
KarenCM
Posted

I just wanted to let everyone know that a Celiac episode aired today I didn't get the chance to watch it but luckily it is repeating next week Sunday October 23 12noon channel DHC. Did anyone else watch it today?

Karen

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VydorScope Proficient
VydorScope
Posted

What show is this? Is it a drama or somthing? Never heard of "Mystery Diagosis"... what network carries it?

sb4480 Newbie
sb4480
Posted

I watched it last night. The show is called "Mystery Diagnosis" and it's on the Discovery Health Channel. I think it was the first segment of the show. It told the story of a little boy who was really sick, he kept having seziures and they had no idea why. His mother had celiac disease but her doctors told her it was "rare" and not genetic so not to worry about her family. Well, low and behold, it turned out that his problem was in fact celiac disease but he had atypical symptoms. He had no GI problems at all.

I was so happy to see the subject being discussed. There was also discussion about the fact that celiac disease is not as rare as doctors used to think and should be considered regardless of symptoms if family members have it.

Stephanie

julie5914 Contributor
julie5914
Posted

Yeah, the show usually covers people who go from doctor to doctor, knowing something is wrong but being unsatisfied with what doctors were telling them, essentially not knowing what was wrong. (Sound familiar?) They usually cover a few different people's stories (who have finallly found out what is wrong) in an hour episode. Last time we watched this, my husband said I should be on it - I am glad they are doing one on Celiac.

robbiesmom Rookie
robbiesmom
Posted

I was thrilled to turn on this new show and discover they were talking about celiac! I taped the second showing so I could have documentation of this when we have to switch doctors or a second child has atypical symptoms. Anyone know when the House celiac episode is to be aired? I hope I didn't miss it!

CeliacMe Rookie
CeliacMe
Posted

Me too! I was diagnosed with "IBS" 4 years ago and Celiac in July! You know, IBS isn't a diagnosis right? It's something the doctor says when he cant figure out you have diarrhea. LOL I hate doctors!

Yeah, the show usually covers people who go from doctor to doctor, knowing something is wrong but being unsatisfied with what doctors were telling them, essentially not knowing what was wrong. (Sound familiar?) They usually cover a few different people's stories (who have finallly found out what is wrong) in an hour episode. Last time we watched this, my husband said I should be on it - I am glad they are doing one on Celiac.

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      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
      celiac, chocolate and alcohol

      By barb simkin · Posted

      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
      celiac, chocolate and alcohol

      By trents · Posted

      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
      celiac, chocolate and alcohol

      By barb simkin · Posted

      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
      celiac, chocolate and alcohol

      By trents · Posted

      @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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