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

Here's A New One


GlutenWrangler

Recommended Posts

GlutenWrangler Contributor

Hey Everyone,

I haven't posted in a little while, so I figured it's about time that I check in. There hasn't been any change whatsoever in my condition, which is partially why I haven't posted recently. So I'm still on the IV Nutrition, and I'm still not eating anything at all. But on a positive note, I was able to get on disability, which is such a huge help.

But anyway, my doctor decided to try out a new prescription about a month ago to see if it would help settle my stomach and give me an appetite. It's called Marinol, which I'm sure some of you have heard of. It is pure synthetic THC, which is the main component in Marijuana that causes the psychoactive effects. So basically it's a Marijuana pill. It's supposed great for nausea, gi upset, and appetite stimulation. So far, I'm really impressed with its effectiveness. It works wonders for nausea, and can calm my stomach down within minutes. It also helps to stimulate my appetite, although not enough to allow me to eat. It does get you really "high" though, and can cause some drowsiness too. But all around, it really helps.

Is there anyone else here who has tried Marinol? If so, how helpful was it for you? Thanks in advance!

-Brian


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I don't have any experience with this but I have heard of it. I am surprised it makes you feel 'high' though, I thought the whole reason they made a pill was so people wouldn't. I am glad it is helping you a bit. I hope you continue to improve and that you are soon able to injest food.

That is good news about the disability also, that must be a real relief.

cruelshoes Enthusiast

I took that medication as a teenager during cancer treatment. It was not under that brand name, it was just marketed as THC. It did stimulate my appetite and help with the nausea, but I did not care for the side effects. I had hallucinations with it. I remember distinctly sitting in my astronomy/geology class after taking a dose and watching my teacher's face melt. It made me very paranoid too. I don't know if everyone has the same experience. The few times I tried getting my THC the old fashioned way as a teenager (don't you dare tell my mother!) I had the same effects. Maybe it is just me. I ended up giving the unused pills back to the pharmacy.

Glad it is working for you.

home-based-mom Contributor

Glad to see that you are well enough to post. That is GREAT news about the disability!

As far as the THC goes, I believe the reason it was put into a pill form was not to reduce or eliminate the side effects such as getting high, but to eliminate the impurities and inconsistencies in the cultivated product, and not subject an already very sick person to lung damage from smoking. (It does not matter the source of the smoke - smoke in lungs causes damage.) The active ingredient in THC still does what it does.

As a "child of the '60's" I think I am qualified to tell you that the side effects mentioned by Brian and Colleen are the reason most (I realize not all) people who ingest THC "the old fashioned way" indulge in that activity. They are seeking those very same side effects. ;)

GlutenWrangler Contributor

Yeah it's not for everyone. I smoked as a teenager, so I have no problem with the side effects. I started up again to help settle my stomach last fall. But it started to affect my lungs, and my doctor felt that it was worth switching me to the pill form. Home_Based_Mom is right though, the point of the pill is to remove all of the impurities, and to relieve the patient's lungs.

But it helps a lot, not only for my stomach, but also for my pain as well. I would think that a lot of Celiacs could benefit from it, in terms of appetite stimulation, and calming down the stomach after being glutened. But at the same time, it's not the easiest drug to get prescribed.

-Brian

sickchick Community Regular

Hey!:)

Congratlations on your disability Sweetie! I am so happy you found something to help with your appetite

lovelove

Collette

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

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

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

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,079
    • Most Online (within 30 mins)
      7,748

    Terra33
    Newest Member
    Terra33
    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
      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
      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
      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
      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
      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.