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
      130,550
    • Most Online (within 30 mins)
      7,748

    Bethann Sheridan
    Newest Member
    Bethann Sheridan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had blood work and my hemoglobin, hematocrit, protein and alkaline phosphatase were all low. They have never been low in the past but since august of last year I have been on the in and off gluten rollercoaster as I mentioned in previous posts. Should I be concerned with these new findings? I am worried I have made myself really sick and done damage or something this past year 
    • LynnM
      Thank you Scott. My son doesn't have a reaction topically, only when ingested. Interestingly though, the doc told us the face cream getting gluten into his bloodstream doesn't do the damage akin to when gluten is ingested. He had no reaction when using the face cream, it only presented in blood-work. I'm hopeful from all the comments today and will wait for the GI doc to reply. If he is cleared to use it, I will encourage SHIELD to get a gluten-free certification 
    • Scott Adams
      It’s great that you’re taking the time to research products carefully for your son with celiac disease—especially since accidental gluten exposure through skincare can be a real concern for sensitive individuals. Based on the ingredient lists you’ve shared, none of the products appear to contain obvious sources of gluten like wheat, barley, or rye derivatives. Ingredients like glycerin and tocopherols (not listed here but often a concern) can sometimes be derived from wheat, but many manufacturers use plant-based or synthetic sources. SHIELD’s transparency and willingness to share their full ingredient list is a good sign, and their note about not intentionally adding gluten is reassuring. Still, because ingredient sourcing can vary and sensitivities differ from person to person, it’s wise that you’ve reached out to your GI specialist to be sure these products are safe for your son’s specific needs. In the meantime, if you do try any of the products, consider patch-testing them first and watching closely for any signs of skin irritation or reactions. PS - Most people with celiac disease won't react to skin products that may contain gluten, but I still recommend finding gluten-free products.
    • LynnM
      Greetings Trents and Scott. This is the first time I'm posting here so I apologize in advance if I'm not replying properly. My 13 YO was diagnosed at age 5 and once gluten was removed from his diet, he grew 3" in a year, skin became much better and dark circles around his eyes disappeared. Today his numbers were very high and our new dietician discovered his face cream (Clinique dramatically different lotion) contained gluten. My fault for not checking.    His acne really has only just started and he's using OCT gluten-free products but the SHIELD is nothing short of miraculous for my 16 YO son and the 13 YO is eager to start. I will await his dietician's reply or google each ingredient.    I don't want to put him on that Rx as it's not that bad and isn't painful either. Just a boy starting 8th grade and doesn't want bad acne.    When I hear back I will circle back. 
    • Scott Adams
      That happened to me as well @trents! I always wondered it that regimen caused my celiac disease! 
×
×
  • Create New...