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

Recommended Posts

Scott Adams Grand Master

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

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

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

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

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

Karen,

 

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

 

Colleen

kareng Grand Master

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

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

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

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

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

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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.