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Natti1076

703d

Those of you who have been severely vitamin deficient — vitamin B12 or vitamin D — how much of this was due to having EDS, versus, being due to aging and diet?

Top reply
    • Flightlessbird

      703d

      I have been dangerously low with vitamin D. We found it was the gi manifestations of the EDS. I am constantly low on vitamins and it is worse when the GI issues from the EDS are flaring up.

    • Ashleyej008

      701d

      Someone just posted this on Facebook: https://ohtwist.com/about-eds/comorbidities?fbclid=IwAR1x6-L0JGHbd_klxxfrVglTmSd3_6t0UzMHivQUt0_Nn64mPBLRkasVXXg It actually states that Chronically low Vitamin D and B12 levels (caution urged for those with MTHFR mutations with the latter, may need a different form of Vit B) is observed in people with EDS.

    • Natti1076

      703d

      I 100% have slow gut motility and have cut back on my NSAID usage due to gastritis in the past. I’ve cut out gluten and dairy for about a month and a half now and it’s made a huge difference but still slow gut motility

    • Natti1076

      703d

      Okay thank you! I was starting to gas light myself into thinking it was just my diet and not EDS related because I supplemented with B12 and started to break out really bad. Now i only take a multivitamin and a high dose of vitamin D and I’m still breaking out, so I think it may be hormonal (I just started a new progestin-only birth control called slynd)

    • Flightlessbird

      703d

      I have been dangerously low with vitamin D. We found it was the gi manifestations of the EDS. I am constantly low on vitamins and it is worse when the GI issues from the EDS are flaring up.

      • Ashleyej008

        703d

        @Flightlessbird I figured it had to do with GI malabsorption. That would be the only reason I could really think of. My doctor started doing B12 injections. So I am hoping since that goes into muscle I will get better results but the Vitamin D is a real struggle. Especially living in the Midwest.

    • Ashleyej008

      703d

      I was also wondering the same thing. I need constant really high doses of both to be in normal ranges.

    • InconclusiveResults

      703d

      I have been deficient in both since I was a kid, so maybe diet, but definitely doesn't seem to be aging in my case. I started taking sublingual B12 instead of capsules and that seems to keep my levels more consistent--plus it tastes nice and doesn't give me neon pee, haha!

    • loweffortcasual

      703d

      I am consistently b-12 deficient despite supplementing. I didn't know this could be eds related!

☝ 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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