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Jenniferxgfx

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    veganism, baking, photography, environmentalism, activism, disability advocacy

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About Me

*I'm not affiliated in any way with the xgfx.org website. "xgfx" is a shorthand cutesy designation for "gluten-free vegan" and I like it. Veganism is important to me for personal reasons and my freedom from gluten has also become very important, so I wanted this incorporated into my username. I don't know anyone affiliated with the xgfx website, although I've been known to look up recipes there on occasion.

I'm 40-something years old, and have discovered I had celiac in June 2011 after a lifetime of asthma, "acne," and anemia, and 5 (6? I forget) years of fibromyalgia (and a million diverse symptoms blamed on fibromyalgia). I've got invisible disabilities that cause chronic pain (arthritis-spine, spondylolisthesis), but it was the fibromyalgia symptoms that really impacted my lifestyle. Most doctors blame everything on fibromyalgia, and I was complacent and accepting of it for a long time. I've had negative tests, but am convinced gluten is toxic to me since avoiding it has made such a difference, and have accepted that current medical science can't formally diagnose me.

This board has been a huge asset for me in this journey. Thank you for your inspiring stories and helpful information.
 

I lost my career to celiac disease, but now that I'm on the mend, I'm trying to get back to work again.

  1. I didn’t say I took a multivitamin, I said I’m taking my B’s. I agree that multivit’s don’t do the trick when you’re dealing with specific deficiencies. I appreciate the time you took to write all this out, and I hope someone finds it helpful. I’m aware of this information, but in my specific case, my potassium levels are quite low and I am regu...
  2. Yep, I do take my B’s, thanks. I also don’t eat enough so I’m not getting enough dietary potassium or magnesium.
  3. Wow, thanks for sharing this! This post was super validating. I've been glutened by oats so many times, I can't trust them at all any more and I just assume that I'm one of the celiacs who can't tolerate any oats. (Maybe someday I'll grow my own and find out for sure.)
  4. Yeah, that's what I've been doing, it's just a bit tedious, and I'm not as exact as a manufacturer would (or should) be. It'd just be nice to have something I can pull off a shelf and dump into some water. I'm already cooking almost everything I eat from scratch, and I'm very tired.
  5. Holy moly, Sandoz sounds evil. Really appreciate the heads up. Also really glad you’re on the mend— what a doozy of a reaction. appreciate the B1 tip, too. My spouse has HBP and is always looking for ways to reduce meds when possible or treat occasional bouts of higher than usual BP. (Life is so stressful right now, it’s tough to avoid stress.) ...
  6. I have POTS, which significantly worsened after I had covid 4 months ago. Keeping my electrolytes up is one of the ways symptoms are managed. I’m on an extremely low dose of a beta blocker to manage tachycardia (the T in POTS). My need for potassium & other electrolytes isn’t in question… I’m just looking for SAFE gluten-free electrolytes. In gen...
  7. Hi there, I’m in desperate need of electrolytes, preferably a blend with a generous amount of potassium (many of them are loaded with sodium and don’t have much potassium to balance it out)… there’s a lot on the market but I’m overwhelmed. I really liked Liquid IV, and I used that for a few months fine, but then I changed flavors and got glutened really ba...
  8. Do you kind saying what you were taking that glutened you? I’m on a low dose beta blocker (metoprolol) to control tachycardia and I’m actually here looking for potential sources of cc because I’m feeling so awful rn. Is your potassium checked regularly? Low potassium can increase BP. There are supplements and electrolytes but potassium rich food ...
  9. Nope. I’ve been glutened by certified stuff, and if you have celiac reactions to oats (like I do), the gluten-free certification is kinda worthless if the company is also making gluten-free oat products. I will say that I trust certified stuff over non certified, and if you’re in doubt, contact the mfg and ask if their raw ingredients are gluten-fre...
  10. I’ve had it “figured out” for about a year... but I’ve had a couple flare ups (due to bobs red mill trials and other oat contamination) since then. But the reactions aren’t as severe (it seems dose-dependent: since I’m militant about it all, any exposures have been small) and i only try one new food at a time— I test it with one package/serving/meal/whatever...
  11. I’m glad you’ve found some relief! I’ll try to answer your questions: 1. IMO it’s personal... for me, if I’m still waking up with new lesions, or the old ones aren’t getting any smaller, then I need to avoid iodine. Once they’re completely gone, I can eat iodine with wild abandon again. I’ve tried iodine-rich foods when everything is smaller/near...
  12. I have really severe DH and I’ve finally (after 9 years gluten-free) recently been feeling like I have a handle on things. Here’s a few things I’ve found: I can’t trust oats. Every single kind of gluten-free oat had triggered a DH reaction. Even if I don’t have GI problems, gluten-free oats are simply not gluten-free Enough for me. I can’t tru...
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