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Jenniferxgfx

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Latest Celiac Disease News & Research:

Everything posted by Jenniferxgfx

  1. Jenniferxgfx
    Omg I had no idea about NSAIDs. They make me so sick too, and I tried a topical for fibro pain, and it made my skin flare so bad, I stopped using it even though it was the only rx that ever helped that pain. (avoiding gluten makes that pain infinitely better, it turne out.) Anyhow, do you find iodine aggravates your dh? Iodine can be in all kinds of drug...
  2. Jenniferxgfx
    You are so incredibly sweet for being so conscientious of your husband's celiac! It just made me all warm and fuzzy to read your concern. Glutenings happen! And accidents happen too. This is absolutely not your fault and you're so supportive and wonderful to be so concerned. I wish you and your husband much love and a quick comeback for you both!
  3. Jenniferxgfx
    I've had blisters that were dismissed as acne since i was 8 years old. i'm in my 30s. it feels awful to be dismissed by the people who are supposed to help you. i sympathized so much with your post. i haven't been to a dermatologist (the one time i did when i was younger, they weren't real kind), but i had celiac testing (blood & biopsy) that were negative...
  4. Jenniferxgfx
    My experience is not nearly as serious or scary but my biggest GI issue for the last few years has been food getting stuck in my throat. (and then not digesting once it sloooooooowly reached my stomach.) I was given reglan and told it was gastroparesis. Reglan helped, but it was weird someone in their 20s would need it, and now I'm in my 30s. Episodes could...
  5. Jenniferxgfx
    I was an EMT back in the day and I highly recommend spelling out the prominent triggers and calling them allergies. Most folks Wont know acronyms of any kind or what Celiac means during a reaction. Definitely say if an epipen is available. The semantics aren't as important as it is to spell out the commonplace things that can harm your child.
  6. Jenniferxgfx
    Oh man, gluten has made me rethink where I put my hands now. If there's gluten, there's also germs, and both are bad. Shudder. I'm sorry you were glutened!!!
  7. Jenniferxgfx
    I also took reglan for gastroparesis and it turned out to be a gluten problem. I also had a negative celiac test, and I'm sure it was a false negative now. I think medical science just hasn't come up with a test as sensitive as we are
  8. Jenniferxgfx
    My skin is getting so super sensitive since avoiding gluten (1month now). If I touch anything with gluten or iodine, I get blisters or something equally unsightly and uncomfortable. It's so upsetting (and makes me feel so hideous), I just want to lock myself in a cave and not come out till I look normal. I feel like after a lifetime of this, maybe I'll never...
  9. Jenniferxgfx
    My muscle pain was chalked up to fibromyalgia, but now I think it's been a gluten reaction all along. Don't let them do that to your son. You're right to question them. Wish I had some advice. Docs/RNs never listened to me either.
  10. Jenniferxgfx
    I feel like a rock star
  11. Jenniferxgfx
    Omg you get itchy armpits too???? Mine have bothered me since I was a kid and now I get some relief! Unless cc'd I'm a month into being gluten free after a negative biopsy and feel like a new person. screw the tests. :/ I glutened myself with oatmeal too, but it was Aveeno lotion. I though I'd be ok too. Live and learn I guess. Yay you!
  12. Jenniferxgfx
    Congrats!!
  13. Jenniferxgfx
    Oh man, that's rough hopefully it's a learning experience for her, but sad it was at your expense. I hope you feel better soon.
  14. Jenniferxgfx
    I realized my science wasn't quite right. Gluten is a composite protein from both glutenin and gliadin. Pardon my pickiness.
  15. Jenniferxgfx
    Allergies are histamine responses to proteins, and there are 4 proteins in wheat: albumin, globulin, gliadin and gluten(in). To my knowledge, allergy testing doesn't differentiate between wheat's proteins... Gluten allergy is a bit of a misnomer, but celiac/gluten intolerance is an autoimmune reaction to the presence of gluten specifically.
  16. Jenniferxgfx
    I had testing done and was negative, but definitely have a severe reaction to gluten and canNOT have it. If "proof" is required at your school, I'd fight it. I'd show them primary sources demonstrating how many people test negative but have celiac or gluten intol, and I'd make a huge fuss. (I was really involved in student govt in college. There was a "food...
  17. Jenniferxgfx
    I've read here some folks actually wash their grains before grinding. Soap should denature the gluten protein, actually, and I do wash my veggies with soap or Fit wash. Fruits with lots of crevices and pores may be harder to de-gluten, but I have no evidence for this, just thinking about it. Not a dumb question
  18. Jenniferxgfx
    I completely agree with your theory and have been trying to research that myself, without finding much at all. From what I understand, two of the four proteins in wheat are really hard for humans to digest, so i do actually think "normal" folks have some of these antibodies, too, and so i wonder if some scientists in a lab with no patient experience...
  19. Jenniferxgfx
    I kinda think processed soy is the devil:/ Theres also hemp Protein. Plus stuff like quinoa, served in place of rice. Is that out too?
  20. Jenniferxgfx
    Thanks so much! I've learned a valuable lesson in common sense and listening to my body
  21. Jenniferxgfx
    There is definitely refractory celiac, but have you tried beans, peas, and lentils too? (didn't see them listed). I'm vegan for ethical reasons, but meat actually made me ill way before I knew I had celiac and went vegetarian for multiple reasons, including angry gut problems after eating meat. People thought it was psychosomatic but it wasn't. Meat's just...
  22. Jenniferxgfx
    Oh man, my skin is so angry. I got a free bottle of Aveeno eczema lotion awhile back and my skin got a little upset, so I've been slathering myself in it, without a thought. My partner with psoriasis swears by the brand, so I figured my sensitive skin was safe. At first it helped, but now it's much worse. Whoops. :/ Are ALL oats contaminated unless they...
  23. Jenniferxgfx
    I had negative blood test and biopsy too and am certain gluten is bad for me. What folks here told me is it doesn't matter what you call it, just don't eat it if it makes you sick Welcome to the club! Maybe someday there will be more accurate tests!
  24. Jenniferxgfx
    Aha! I feel silly now. Thanks!
  25. Jenniferxgfx
    As a brand new celiac adult whose parents only did what they had hard evidence for despite a lifetime of sickness, I beg you to listen to your sons body and just try a gluten-free diet. A lifetime of sickness and disability that could have been prevented with a healthy diet change is well worth the parents' inconvenience, I think.
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