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  1. InstantCoffee

    Finally stable with diet!

    I want to preface this by saying that this change has lead me to believe I may not actually have 'crohns' but some kind of pancreatic deficiency brought on my gluten intolerance which caused crohns-like symptoms. Condensed background: Dx at 14, 2004ish, malnutrition, throwing up green bile...
  2. InstantCoffee

    Limited options for Vitamin C - any suggestions?

    I'm using powder in a half gallon of water and it seems to be doing okay now.
  3. InstantCoffee

    Limited options for Vitamin C - any suggestions?

    I have not, can that be taken sublingually?
  4. InstantCoffee


    I have and it works for me but it's hard to keep up. I'm working on going full carnivore actually.
  5. InstantCoffee

    Limited options for Vitamin C - any suggestions?

    I cannot tolerate leafy greens, citrus fuits, or ascorbic acid supplements without severe diarrhea. The only thing I know of I can tolerate with Vitamin C is strawberries (expensive and always go bad so fast) and sauekraut (ew). Any other possible options?
  6. InstantCoffee

    Are you allergic to Nickel?

    So this lead me down an interesting rabbit hole. I read about nickel allergy because I've had bad reactions to earrings, and nickel is a common cause. Well I've been safely eating oatmeal for a long time and suddenly I'm sick and oatmeal is high in nickel, so at first I thought it might be a...
  7. InstantCoffee

    A Crohn's related skin question

    I suggest getting Nizorale shampoo, massage onto the scalp with no water and let sit 20 minutes. Do this daily for 1 week. Then 3 times a week for the remainder of the month. See if it clears. Avoid conditioners and shampoos with oils and esthers. Very hard to do, but possible.
  8. InstantCoffee

    A Crohn's related skin question

    Can I ask what you're treating it with? I have chronic scalp, neck and shoulder fungal acne outbreaks (most likely a malasezia) and I believe chron's makes us more susceptible. I have to be careful in any kind of shampoo, conditioner, hair styling cream, lotion, etc. I use in order to not get...
  9. InstantCoffee

    Exocrine Pancreatic Insufficiency(EPI)

    Wondering if this might be what I have and the reason I have so many food-based issues. Time to call the doc.
  10. InstantCoffee

    “Silent” Crohns and treatment

    Mine is far from silent, but despite the fact that I have severe food sensitivities, I don't seem to show any endoscopic sign of disease as long as I avoid the more severe trigger foods. Because I don't show signs of inflammation, my doctor won't prescribe me anything. I was on Remicade from...
  11. InstantCoffee

    Fasting-mimicking diet (FMD) shows promise for Crohn's sufferers

    Plant based is the issue for me. I don't really know of any plant fats I can consume in large enough quantities for that to be safe. Maybe safflower oil? Oils pretty much all make me sick, as well as green plants, so no avocado. No nuts, no legumes. I get most of my fats from fatty fish.
  12. InstantCoffee

    low FODMAP

    My theory is that what you eat feeds bacteria that like that, and growth of it. So whatever I eat most of, if it's prebiotic at all, it ends up being an issue. I've had issues with grains, fats, meats, sugar, in rotation. So at this point I think mixing intermittent fasting with a steady...
  13. InstantCoffee

    Are you drinking coffee?

    Coffee has consistently had no effect on my crohn's. I had one bad flare where whole-roast coffee would cause cramping and I switched to instant coffee for a bit until I recovered.
  14. InstantCoffee

    low FODMAP

    I tried low FODMAP by the book and it didn't work for me. I went to a nutritionist who suggested I try it again, so I logged every ingredient I consumed for 2 months in a program. As in, I ate whole foods, or the same packaged foods, every day, because that's my life at this point, and put...
  15. InstantCoffee

    Fasting-mimicking diet (FMD) shows promise for Crohn's sufferers

    Intermittent fasting has been my go-to when symptoms get bad. 16-8 splits usually do the trick. I've tried 24 hour fasts before as well. I wouldn't be able to do this FMD diet as the contents are all foods that will cause flares.
  16. InstantCoffee

    Why Don't GI Doctors Take The Role Of Diet Seriously?

    I will talk to him about this, I need to book a follow up as I'm well overdue, I've just been putting it off because honestly nothing ever gets done at them, I don't come away with new treatment options or anything.
  17. InstantCoffee

    Stimulants to combat severe chronic fatigue?

    I use antihistamines with pseudophedrine in a pinch, works great.
  18. InstantCoffee

    Turner's Syndrome and impact of HRT on Crohn's

    I am trans and on HRT, I take a weekly shot of estradiol valerate. It hasn't had any noticeable impact on my crohn's presentation and it's pretty easy to maintain. There's also oral estradiol taken sublingually / bucally which I took for the first several months. It's a bit more challenging as...
  19. InstantCoffee

    Why Don't GI Doctors Take The Role Of Diet Seriously?

    No, I don't respond to humira or remicade, I tried medical marijuana and he's not willing to explore LDN. He wouldn't even write me for medical, I had to go elsewhere for it. I think he said something about not knowing what to give me because my condition is more or less under control when I'm...
  20. InstantCoffee

    Why Don't GI Doctors Take The Role Of Diet Seriously?

    If stress was a factor I would never see improvement, because I'm too busy stressing about eating the right thing.