Meggo

184d

I feel like I’m anorexic when I’m not. But every time I eat I feel gross or full quickly, or I trigger my MCAS and it .. exits quickly. Or I’ll feel gross and itchy and miserable. Because of all this, I’m finding it incredibly difficult to eat enough to maintain my weight. I don’t have a specialist where I’m at, and I’m not small enough for my doctors to be concerned.. but I am. I am 28 and haven’t weighed this small since I was 19-20. I’ve gone from 160 to 124 at 5’7” with 0 exercise. It doesn’t help that before I knew I had EDS, I had liposuction on my midsection and the skin never tightened. The extra skin is adding a layer that helps me not look as small as I am.

I guess I want to know if anyone else is experiencing this? Or has? And how in the world can I beat it. I don’t feel gross when I’m eating fruits or vegetables if they aren’t in a bunch of stuff so I have started my own garden this year for even fresher food but I need the rest of my nutrients somehow too.

Skin Itch

Chronic Nausea and Vomiting

Mast cell activation syndrome

Anorexia

Symptoms Involving Nervous & Musculoskeletal Systems

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  • InconclusiveResults

    184d

    Kate Farms nutrition shakes have been life-changing for me! They taste incredible (no chalkiness or aftertaste), and they don't make me sick. I originally bought them for post-op recovery, but I have kept buying them and I have at least one a day now! I have noticed a big difference since I started incorporating them into my diet.

    • Meggo

      184d

      thank you!!! I’ll definitely try them! I have the chalky problem too with the ones I’ve tried. I learned I would not survive the apocalypse because I just can’t force feed myself things I don’t like just because they’re good for me. :( just makes me feel as sick as if I’d eat something I shouldn’t.

      • InconclusiveResults

        184d

        Oh gosh, I wouldn't survive either, haha! I have no tolerance for tastes/textures I don't like. 😂 It's especially rough when you are already feeling yucky, too. 💝

  • PolkaDot77

    184d

    I started taking Cromolyn before meals and it makes my MCAS not flare when I eat trigger foods. It's been a game changer for me. I'm 5'6" and 130 lbs and my Dr told me not to lose any more weight so I feel the struggle.

    • Meggo

      184d

      that sounds like a perfect thing to try - trying to lookup if it’s a prescription or not but it seems like it. My GP left the practice at the beginning of the year and she was the only doctor on my team who was willing to help with my MCAS and POTS. The allergist I saw kept saying it was in my head, and then sat on my blood results saying I have “a mast cell disorder” (already confirmed by my GP) and many severe allergies for literally 4 months before emailing me and promptly retiring… (beef, wheat, eggs, and banana.. plus the normal MCAS restrictions) I’ve taken a hiatus from doctors as I recovered from ankle surgery just because I was getting burned out by the wasted time and money for them to push me off. Looks like it’s time to get back on the search! Thank you!

  • Bijoux_bean22

    184d

    I am in the same boat. I’m 5’6 and in half a semester lost 10 lbs. I am now about 126lbs and so sick that applesauce and juice sometimes hurt. My mom thinks it’s my MCAS, but my guess is gastroparesis. It’s common with EDS. I see a new GI dr a few weeks. Hopefully this one can help.

  • Meggo

    184d

    My GP actually diagnosed me by doing many bloods tests while I was feeling horrible until we caught elevated tryptase. It sucks because if the test is negative, you might still have MCAS but not a flare up… but if it’s positive it’s definitely a mast cell disorder. I’m struggling to find care as well :( I hope that helps if you can find a GP that listens to us zebras!! Also - I have symptoms of gastroparesis as well - my GP ordered reglan because it stimulates the muscle movement to promote digestion that is hindered with gastroparesis to see if that would help that as well as my nausea. Guess and check isn’t the best option for patients but my doctor knew I had to get help somehow. Sadly she left the practice after my diagnosis’s. :(

    • Meggo

      184d

      @Bijoux_bean22 this was for you I just messed up the reply button lol

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