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
      127,167
    • Most Online (within 30 mins)
      7,748

    RedheadedAshley
    Newest Member
    RedheadedAshley
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any formal test results that prove celiac disease, you could just as easily have NCGS (Non Celiac Gluten Sensitivity). In fact, what testing you have had done indicates you do not have celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten is the antidote for both. What muddies this whole question are two things: 1. Lack of official diagnostic data that indicates celiac disease. 2. Your persistence in consuming gluten, even though in smaller amounts. Your anxiety over the insomnia seems to outweigh your anxiety over the weight loss which prevents you from truly testing out the gluten free diet. What other medical testing have you had done recently? I think something else is going on besides a gluten disorder. Have you had a recent CBC (Complete Blood Count) and a recent CMP (Complete Metabolic Panel)? You say you don't believe you have any vitamin and mineral deficiencies but have you actually been tested for any. I certainly would be concerned with that if I was losing weight like you are despite consuming the high amount of calories you are.
    • trents
      Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So, there is a question in my mind as to whether or not your gluten consumption was intense enough to ensure valid testing the second time around. And was the tTG-IGA the only antibody test that was run? That is far from a comprehensive celiac panel. Concerning your negative biopsy, there is the possibility of patchy damage that was missed due to inadequate sampling as you alluded to. There is also the possibility that the onset of your celiac disease (if you have it) was so new that there had not yet been time to accumulate damage to the small bowel lining. Your total lack of symptoms at the time of diagnosis would seem to support this idea. Having said all that, and this is my informal observation from reading many, many posts like yours over the years, I wonder if you are on the cusp of celiac disease, crossing back and forth across that line for the time being. My suggestion would be to keep a close eye on this for the time being. Watch for the development of symptoms and request a more complete celiac panel a year from now. Here is an article that discusses the various antibody tests that can be run for celiac disease. Note: The EMA test is kind of outdated and expensive. It has been replaced by the tTG-IGA which measures the same thing and is less expensive to run.  
    • SaiP
      Hi, yes. Much more solid and firm, as opposite to diarrhea like when on gluten.
    • AndiOgris
      Hi all I have had a very confusing year with celiac disease (or perhaps not as it turns out) and wondered if anyone can help me make sense of it? My mother was diagnosed with celiac disease (in her 70s) a couple of years ago. I am in my early 40s and did not have any symptoms, but I took a blood test in November 2023 and it came back positive (TTG IGA 23.4 U/ml - normal range is below 7 U/ml). I was referred for a gastroscopy to confirm, which was scheduled for October 2024 (I use the UK health service, things move slowly!). The gastroscopy found no evidence of celiac disease.  My gastroenterologist has asked me to retake the blood test, and it just came back negative (TTG IGA 1.6 U/ml - normal range is below 7 U/ml). Given the long wait between my initial positive blood test and my gastroscopy, I reduced my gluten intake but never avoided it fully. In the 6 weeks before the gastroscopy and the second blood test, I made sure to eat at least two slices of bread a day as recommended, and often I had significantly more.  So what's going on? I understand that false positives are very rare for celiac blood tests, and usually associated with other serious diseases which I am fairly sure I don't have (my health is generally very good). After the negative biopsy, I thought that (i) either they did not take enough samples, or (ii) I have "potential celiac disease". But now that the second blood test has come back negative, I'm running out of plausible explanations...  Can anyone make sense of this? I have not spoken to my gastroenterologist yet - I wanted to get a better sense of where I am beforehand so that I can ask the right questions. Under the UK system, specialist doctors can be very hard to get hold of, so I need to make the most of my time with him! Thanks!        
    • trents
      Do you mean that your stools firmed up when you began to cut gluten from your diet?
×
×
  • Create New...