Jump to content
  • 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

Would You Be Among The First To Give It A Try?


Molecular Dude

Recommended Posts

Molecular Dude Apprentice

For those of you that are saying "No", I certainly understand your views. There is always risk with drug trials, and with medications even after they have been approved by the FDA. But, remember this is a HYPOTHETICAL secondary trial (I mentioned AT-1001 only as an example to start this thread). I probably wouldn't participate in a Phase I study either. But, the way I see it when it comes to Phase II, you can't win if you don't play! If it turns out well, you have helped both yourself and the world community. If not, at least you took a shot at bettering both yourself and the world.


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



Celiac.com Sponsor (A8-M):



kevsmom Contributor

Several years ago, I was treated for a benign brain tumor. Afer undergoing two conventional surgeries, it was discovered that they could not remove all of it.

I was offered the chance to be the first patient at a local hospital to have non-invasive Cyberknife surgery. They brought me into the room where the surgery was to be done, and I could still smell the wet paint on the walls. The doctor who would be performing the procedure said to me "You will be the first person we will do this on - oh, we have done it before at other hospitals, but not here" :D.When they did it, a whole team from Stanford University was there to supervise and observe.

After the treatment, I got up off the table and went to work. A big difference from the conventional surgeries.

Without people who are willing to undergo trials, new ways of treatment would not be available.

Cindy

kbtoyssni Contributor

Nope. Not for something like celiac that has an easy, non-drug treatment. I don't find the diet to be *that* hard. It's just what I do. I don't know what's in this drug, but the possibility of side effects and other toxin-related issues is enough to make me not want to take it.

VioletBlue Contributor

Take a look at this thread and tell me what you think: Open Original Shared Link

Does that sound to like they're planning to sell this drug on down the line as an aid to help when people "accidentally" gluten themselves? "Do you dream about being able to eat pizza, pasta, cookies, cake and all of your favorite gluten-containing products again?" It doesn't to me. I sounds like they're invisioning a cure that involves a life long dependancy on a drug. Likewise, are the lactaid pills on the market sold for accidental lactose ingestion or are they sold to people with the understanding that now they can drink all the milk they want?

There is what the drug CAN be used for and then there is how a drug like this will evidtably wind up being marketed.

Violet

Jodi Mills Apprentice
Take a look at this thread and tell me what you think: Open Original Shared Link

Likewise, are the lactaid pills on the market sold for accidental lactose ingestion or are they sold to people with the understanding that now they can drink all the milk they want?

Violet

Hi Violet, My boyfriend is lactose intolerant, And for the pills to work you are to take them before you eat/drink anything with lactose in it. They work up to 45 minutes, so if you take them and then eat an hour later they wont help at all. They dont cure his lactose intolerence completly, he still has some effects of the lactose, but is not nearly as bad as if he misses the pills completely.

If it were for accidental ingestion, then you would be able to take them anytime after ingesting lactose, but it says on his box to take them before eating.

hope that helps. havent gotten to look at that thread, but will when I am at home,(my house comp. is way faster than this one at work.)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      1

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

    2. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

    3. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    4. - Seabeemee replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,169
    • Most Online (within 30 mins)
      7,748

    Annette Hill
    Newest Member
    Annette Hill
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein bar to fill and play it safe.
    • trents
      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.