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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,540
    • Most Online (within 30 mins)
      7,748

    Barrie S
    Newest Member
    Barrie S
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
×
×
  • 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.