Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Mystery Diseases Tv Show


Claire

Recommended Posts

Claire Collaborator

The show covered several different diseases. The first one was celiac. These diseases are presented as case studies. The Celiac case was a small child who presented atypical symptoms. He did not thrive, was small, did not talk and generally performed way below his age expectations. He had unusual seizure like episodes that kept getting worse and more frequent. The mother had celiac but the doctor had told her that there was almost no chance that any of her children would have it because it was so rare!!!!! To make a long story short, he was finally diagnosed and today is a happy, healthy early teen ager.

The interesting points in his case were that he had positive blood work, positive endoscopy but he did not present the GI symptoms that his mother had and would have recognized. Instead he presented primarily neurological symptoms. This goes to prove that you can't really define celiac by symptoms. Though the gluten sensitivity is usually where you see the neurological damage - this case clearly showed it in a diagnosed Celiac.

I was sorry to see that they did not discuss the neurological implications at all.

The bottom line of this entire program was the common thread of frustration, fear, discouragement, despair felt by all the patients who went from doctor to doctor and got absolutely nowhere. Some of these people lived out their young lives with chronic to acute illnesses - some barely missed death. Scary.

It sure gave a clear message that doctors are not too swift with diagnosis. All these people were persistent and won out in the end - put paid so dearly for the lack of early on help and support. Most of the women were ultimately told to see a psychiatrist. Wouldn't you know.

Anyone else see the show?


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



Celiac.com Sponsor (A8-M):



bluelotus Contributor

I don't get the discovery mystery disease channel. That show would have made me so angry anyway......I really hate doctors at this point and the feelings keep getting exaggerated. I heard today that a 15 year old girl died in Canada after kissing her boyfriend. She had a peanut allergy and had kissed her boyfriend after he had eaten a peanut butter snack of some kind. What the f?!!? Don't doctors tell parents and kids about those sort of seemingly minor risks?!? Ggggggggggrrrrrrrr...... Wish I knew kickboxing so I could take my frustration out in an appropriate manner. Reminds me of doctors only worrying about what us celiac disease's eat - like toothpaste, lipstick, mouthwash, etc. didn't matter!!! So, long story with many tangents later, I wish that family the best, but I am so glad I didn't see the show. I probably would have had an aneuysm. <_<

happygirl Collaborator

Yes, I saw it too! Here is a link to the discussion about the show that has been going on:

Open Original Shared Link

mightymorg Rookie
I don't get the discovery mystery disease channel. That show would have made me so angry anyway......I really hate doctors at this point and the feelings keep getting exaggerated. I heard today that a 15 year old girl died in Canada after kissing her boyfriend. She had a peanut allergy and had kissed her boyfriend after he had eaten a peanut butter snack of some kind. What the f?!!? Don't doctors tell parents and kids about those sort of seemingly minor risks?!? Ggggggggggrrrrrrrr...... Wish I knew kickboxing so I could take my frustration out in an appropriate manner. Reminds me of doctors only worrying about what us celiac disease's eat - like toothpaste, lipstick, mouthwash, etc. didn't matter!!! So, long story with many tangents later, I wish that family the best, but I am so glad I didn't see the show. I probably would have had an aneuysm. <_<

I heard about that poor girl too. Obviously, someone (parents, doctor...etc) wasn't responsible enough to educate them about careless risks. It makes me sad.

I didn't see the show on the Discovery channel; I completely forgot! I hope they show a rerun soon...I'd love to see it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,079
    • Most Online (within 30 mins)
      7,748

    Kassie S
    Newest Member
    Kassie S
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Could be the Ozampic is masking your expected symptoms.  Like an analgesic masks pain.  Qzampic slows digestion to lower the rate glucose enters the intestine to slow its effect on glucose level.  It seems it might also slow down the gluten entry into the intestine, reducing its trigger level for the antibodies.  Ultimately the damage from gluten is the same, just not as fast so the pain is less.  Sourdough bread has less gluten.  Ozampic siows its entry.
    • Wheatwacked
      You can sell it better if the whole family does gluten free.  If he does have Celiac Diease, it is genetic so either you, your spouse, or both have a 40% chance of also having Celiac.  There are over 200 non classic symptoms also caused by celiac disease not often considered by doctors. Joint pain, muscle pain, muscle cramps, osteoporosis, and allergies for starters.  
    • Wheatwacked
      Hello @MHavoc, thank you for your question and welcome to the clinic. First, has the contstipation abated with the GFD? If your are pursuing further diagnostics you must continue to eat gluten. Each lab has their own reference range for their test, but they indicate an H for high.  Typically anything above 11 is considered positive. Mild chronic inflammation (gastritis) can interfere with intrinsic factor for B12 leading to low B12 causing low MCHC (anemia). So what is causing your gastritis?  A high tTG IgA level generally indicates potential gastrointestinal problems most commonly associated with celiac disease.  Although the biopsy is the Gold Standard for diagnosis, not finding damage in the biopsy does not rule out Celiac Disease. It means they did not find damage where they looked.  The small intestine is over 20 feet long. Many here have been blood positive and biopsy negative, it just delays the diagnosis until you have enough damage to find and fit their diagnostic profile. The Ttg-iga is not only sensitive (90%) but highly specific (98%) and won’t show positive until the damage is severe.  It is estimated that 40% of first degree relatives of diagnosed Celiacs have undiagnosed Celiac Disease, so your sister is a big risk factor in whether you have it. Are You Confused About Your Celiac Disease Lab Results?  This article explains it better and is quite readable. Celiac Disease can cause deficient vitamin D.  Low vitamin D compromises the immune system.  Any other symptoms? liver enzymes?  Recent cold or flue? Celiac Disease and the malabsorption it causes through vitamin and mineral deficiencies can elicit symptoms not usually associated with Celiac Disease. Case in point maybe your gastritis and anemia.  
    • MHavoc
      As with most of the people that come here, I have questions and need perspective/info from this wonderful community.  Some background, started having severe constipation that would not abate even with softners (not really fun to talk about), so I was able to finally get in to see my primary and she scheduled some blood work.  One of things she wanted to test for is Celiac Disease due to my sister having celiac disease since a young child. Here are my test results: MCHC = 31.4 so considered slightly low TISSUE TRANSGLUTAMINASE AB, IGA = 78.8 H So with that result, I was scheduled for an endoscope for confirmation of celiac disease, but I am very confused with the results: Diagnosis 1. Duodenum, biopsy: -No pathologic alteration. 2. Stomach, biopsy: -Mild chronic inflammation with reactive epithelial change -H. pylori not identified on immunostained section. -No intestinal metaplasia or dysplasia I am now scheduled to meet with a GI Specialist from the Celiac team, but that won't be until after the New Year.  I would appreciate thoughts about the biopsy report to understand whether it confirms the celiac disease as was indicated by the blood test results. I have been gluten free for two weeks and it is a very difficult adjustment for me as an older 50+ person.
    • Vozzyv
      Anyone else have intermittent left ear ringing and outer right ear pain? Both seem to happen in the evenings. 
×
×
  • Create New...