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GlutenWrangler

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GlutenWrangler Contributor
GlutenWrangler
Posted

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

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ravenwoodglass Mentor
ravenwoodglass
Posted

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
cruelshoes
Posted

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
home-based-mom
Posted

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
GlutenWrangler
Posted
  • Author

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
sickchick
Posted

Hey!:)

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

lovelove

Collette

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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