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MallowMarty

830d

In terms of living with CVID does anyone else struggle with weight gain or protein absorptions? If so what are you few things that you have tried that seem to work for you? I seem to have issues digesting large amounts of proteins.

Top reply
    • DandelionFairy

      688d

      @Stevie33131 I had a scratch allergy test done on my arms. It tested for foods...seafood, etc. Histamine was one of the things it tested for. You usually need to see an allergist for this. I had to have my PCP refer me to a nutritionist who referred me to the allergist. But hopefully there is a shortcut you get to use.

    • Stevie33131

      690d

      I was not familiar with Histamine foods. How do you get diagnosed for that allergy?

      • DandelionFairy

        688d

        @Stevie33131 I had a scratch allergy test done on my arms. It tested for foods...seafood, etc. Histamine was one of the things it tested for. You usually need to see an allergist for this. I had to have my PCP refer me to a nutritionist who referred me to the allergist. But hopefully there is a shortcut you get to use.

    • DandelionFairy

      714d

      I just found out that I'm allergic to histamine in foods as well as filling a low FODMAP, low dairy, and no folic acid diet for allergies and deficiencies. I'm finally beginning to feel almost human.

      • Sexycop

        693d

        @DandelionFairy that’s amazing! I hope you continue to feel better and enjoy your life!

    • Tess123

      715d

      I do have issues with some proteins. I’m using a meal replacement shake called love and peas recommended by a dietician. I’m also trying to cut out sugar completely. Daily biking/ walking. I’ve lost a couple pounds but it’s only been a few weeks. And I’ve slipped on the sugar more times than I’d like to admit.

    • Stevie33131

      776d

      I blow up like a balloon if I consume large amounts of protein, which is super hard when you’re a competitive athlete. I feel for you. Have you found anything that works?

      • DandelionFairy

        714d

        @Stevie33131 is it protein causing the issue? I know that's a big issue. Mine is just the histamine in certain proteins and fruits, seeds, grains...so I am curious.

      • Sexycop

        772d

        @Stevie33131 just lean meats. Like chicken, pork, and once or twice a month red meat. I don’t eat a lot of meat generally. With menopause I gained weight, I don’t suppose that helps! 😉

        • Stevie33131

          772d

          @Sexycop anything helps! Do you find any differences closer to your infusions?

    • epea1211

      789d

      Yes!!! I am basically unable to gain weight. The only thing ive found is protein shakes but that might not work for you. My doctors also said a lot of healthy fats such as avocado, olive oil, full fat butter, etc.

    • MallowMarty

      816d

      The hopelessness is too much sometimes. The doctors listen to me but i dont think they actually believe what i say. Ive had to make massive adjustments to my diet and I can't seem to make it out of the 120lb range. And for a 32 year old male, that is extremely under weight. No matter what i try to gain weight i just end up back where i started.

    • Sexycop

      817d

      I cannot absorb vegetables and if I eat any with high fiber I am doubled over in pain and my body removes it immediately. I can eat fruit, lean meat, nuts, very little starches like bread and potatoes. I fight weight gain too. With the autoimmune added and their meds I feel defeated a lot.

    • Florina

      824d

      So I also have barters syndrome, so low protein and electrolytes and potassium are normal for me. But with this new diagnosis we’re wondering about a lot. Have you tried small portions throughout the day? I also drink protein drinks (mostly to help with my potassium but it helps all levels)

    • MallowMarty

      830d

      I do see several dieticians. Unfortunately my case is so unique they dont really know what else to do. Right now everything is experiemental

    • MallowMarty

      830d

      Makes sense. I habe found with CVID no one case is the same. So I'm just curious to see if anyone has similar symptoms or have tried alternate treatment options. I use IVIG once a week and take a boat load of vitamins. But nothing really helps with my digestive issues or helps.me gain weight.

    • MallowMarty

      830d

      Do you follow a specific diet? My wife has pcos and maintains alow glycemic index diet. Mostly vegetarian and Mediterranean style foods. Helps her avoid the weight gain. Does the CVID have any effect on your digestive system like mine does?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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