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

Most People With Celiac Disease Open To Pharmaceutical Treatments - Celiac.com

Scott Adams

By Scott Adams
in Publications & Publicity

Recommended Posts

Scott Adams Grand Master
Scott Adams
Posted

Celiac.com

Most People with Celiac Disease Open to Pharmaceutical Treatments

Celiac.com

Celiac.com 10/17/2013 - A gluten-free diet is till the only treatment for celiac disease, but a number of companies are working on pharmaceutical treatments. However, very little information exists bout the level of interest among patients in using a ...

Open Original Shared Link ScoopSanDiego.com

Open Original Shared Link ModernMedicine

Open Original Shared Link IT Business Net

Open Original Shared Link  -Open Original Shared Link  -Open Original Shared Link

Open Original Shared Link

View the full article

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

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted

I would choose a gluten-free diet over medication.  I think the mentality of taking a  pill to fix symptoms is wrong and running rampant in the world.  Of course, there are always cases where this is needed, but there are so many more where simple dietary changes can do the same thing. 

 

Do we really "NEED" to eat McDonalds?

 

Colleen

kareng Grand Master
kareng
Posted

I would take one of the ones that is in the trial phases.  It isn't meant to let us eat lots of gluten or "cure" us.  It is meant for use when you want to eat at a restaurant or travel and might get a small amount of gluten no matter how hard you try to avoid it.

Adalaide Mentor
Adalaide
Posted

I'm also open to the idea of pills that are meant to help prevent us from getting sick on the occasions we choose to do something like eat out when we don't know if we'll accidentally ingest a small amount of gluten or not. 

 

What I am not open to is this idea I have seen that we need a pill that will allow us to eat whatever we want, whenever we want. Or, as I've seen some people put it, so we can eat "normally." I'm still trying to figure out what isn't normal about me having steak, potatoes and green beans. Or grilled chicken and fried rice with veggies. Since when is a "normal" meal something you get from a box and just add meat and water to? I don't feel deprived in any way. I eat every imaginable thing I want, I bake much of it myself just like I used to so I don't really see how my life has changed except that I feel better.

 

Besides, for any of us that have ever actually listened to those warnings about side effects of drugs on a commercial it seems that they're all far, far worse than whatever condition they're used to treat. (Except Chantrix... every side effect of that is already a side effect of quitting smoking, as anyone who has quit knows. Of course you're experiencing changes in mood and hostility, you just want a freaking cigarette!) But almost every drug in existence lists GI symptoms as side effects, so what is the point of us wasting our money? Isn't that a huge part of what we're attempting to avoid?

kareng Grand Master
kareng
Posted

This new drug I'm talking about sounds pretty good.  They found that it works best if taken with a carbonated beverage.  It basically works superfast in your stomach to break up the gluten.  What it does to the other food in your stomach, not sure.  It couldn't work on a foot long sub - too much gluten to get digested in a short period of time.  It would have to be in the stomach with the food - not 2 hours later.

GF Lover Rising Star
GF Lover
Posted

Karen,

 

So its a one pill for a certain situation type thing?  Not a daily medication? 

 

Colleen

kareng Grand Master
kareng
Posted

Karen,

 

So its a one pill for a certain situation type thing?  Not a daily medication? 

 

Colleen

 

 

Just take it once in a while when you eat dubious foods.  Its like what all these current "gluten eating enzymes" products claim to do.  Except they tested a bunch of them and they didn't work or only worked on a very small part of the consumed gluten.

 

Something taken daily would worry me.  Other drugs that try to shut down parts of the immune system have a lot of side effects.  I really don't know how they all work.

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

Celiac.com Sponsor (A8-M):


WinterSong Community Regular
WinterSong
Posted

I agree that I wouldn't want to take anything daily. I don't like taking medication because of all the side effects and believe that if you can change your diet rather than taking pills for the rest of your life, then you're lucky.

 

Taking a pill for a week to (for example) go on vacation to another country, on the other hand, I may consider. Although I think I'd be terrified to try eating gluten, even knowing if a medication would keep me safe.

kareng Grand Master
kareng
Posted

I agree that I wouldn't want to take anything daily. I don't like taking medication because of all the side effects and believe that if you can change your diet rather than taking pills for the rest of your life, then you're lucky.

 

Taking a pill for a week to (for example) go on vacation to another country, on the other hand, I may consider. Although I think I'd be terrified to try eating gluten, even knowing if a medication would keep me safe.

The point isn't to eat gluten on purpose....it's for accidental gluten. For exampl, you order as well as you can - for example- French fries fried in shared oil. Pick out Any obvious pieces of onion rings and don't worry about the little bit you can't see. C

WinterSong Community Regular
WinterSong
Posted

The point isn't to eat gluten on purpose....it's for accidental gluten. For exampl, you order as well as you can - for example- French fries fried in shared oil. Pick out Any obvious pieces of onion rings and don't worry about the little bit you can't see. C

Oh gotcha. I had heard there was also research being done on a pill that allows you to eat gluten on purpose. All I've heard are sketchy at this point. 

Adalaide Mentor
Adalaide
Posted

Oh gotcha. I had heard there was also research being done on a pill that allows you to eat gluten on purpose. All I've heard are sketchy at this point. 

 

Yeah... this is the sort of pill I would never consider taking. I find it absurd that people would want to considering the side effects of most pills that are taken on a regular basis. You get "minor" like gas, bloating, fatigue, constipation to more life altering like anal leakage, suicidal thoughts or actions, X Y or Z organ damage. Um... aren't things like that the reason we're all on the gluten-free diet anyway?

kareng Grand Master
kareng
Posted

Oh gotcha. I had heard there was also research being done on a pill that allows you to eat gluten on purpose. All I've heard are sketchy at this point. 

 

 

I think there is.  But, when I participated in this survey, I said I was willing to have medications.  But the one I want is the occasional use one.  I'm not sure that the article makes it completely clear when it says people want a medication.

Archived

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

Go to topic listing

  • 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. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    3. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    4. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
    5. Scott Adams
      0

      Häagen-Dazs Chocolate Dark Chocolate Mini Bars Recall Due to Undeclared Wheat and Gluten

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,075
    • Most Online (within 30 mins)
      7,748
    MamaJessica
    Newest Member
    MamaJessica
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.