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julandjo

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Latest Celiac Disease News & Research:

Everything posted by julandjo

  1. julandjo
    My daughter and I both have major problems with tapioca.
  2. julandjo
    Ditto everyone else. It's just not worth the risk; there are plenty of other safe alternatives out there.
  3. julandjo
    I've also had this for years. My palpitations are PVCs (premature ventricular contractions), and going on an arginine supplement, as well as eliminating all caffeine, helped a lot. I've also had tons of left-sided chest/what feels like heart pain. I've been cleared by a cardiologist, so that put some of my fear to rest, but it's not getting better for...
  4. julandjo
    1. Sex: Female 2. Age: 31 3. How long ago were you diagnosed with celiac disease? 4.5 months ago, which was a few months after having my essentially dead gallbladder removed. Now I know why it died! 4. Does anyone in your family have celiac disease? We suspect both of my kids have it (their reaction to gluten is the reason I was ever even tested; I...
  5. julandjo
    Thank you so much everyone for your replies! I sent a follow-up email to the coordinator after my phone conversation. I told her what I can and cannot eat, and what measures would need to be taken (i.e. wash the pan and utensils before making my food) to keep me safe. I said that if they cannot safely accomodate me, I truly appreciate knowing that in advance...
  6. julandjo
    So I have to go to Chicago for 3 days next month. I called ahead to the hotel my work is putting us all up at, and our conversation did not go well. The coordinator said they were "very well acquainted" with Celiac disease, ha! She said that surely I would be able to find some safe things on the buffet. I said I did not feel comfortable with that as the...
  7. julandjo
    I had the biopsy first, which showed tremendous villous (is that the right term?) damage. My doctor "suspected" celiac, but wanted the blood test to confirm it. I reminded him that I'd already been gluten free for 3 months at that point, so he made me do a 2-week gluten binge. From what I'd read on here I was worried 2 weeks wasn't long enough, but I felt...
  8. julandjo
    I too thought I was fine with soy lecithin. I'm down to so few safe foods and yet was still having constant chest pain (a cardiologist ruled out any cardiac problems). I switched my omega supplement, which contained soy lecithin in the capsule shell, and voila! the chest pain is *completely* gone. I tried a small piece of dark chocolate a few days ago...
  9. julandjo
    I've found that a good omega 3-6-9 supplement helps somewhat. I brought the constipation issue up w/my GI doctor, and he recommended probiotics as well. I noticed a big improvement once I added those in.
  10. julandjo
    Ohhhhh yeah, those need to go. They can absolutely cause you problems. Sorry.
  11. julandjo
    Skylark I'm sending you a great big 'ol hug. THANK YOU.
  12. julandjo
    Question: I read here that a lot of people are able to have some or all dairy back after a period of healing on the diet. Does this go only for those with lactose intolerance? Or is it possible, even with a verrry sensitive casein intolerance? I know mine is casein because I had a horrible reaction to a capsule prescribed to me by my doctor. The only...
  13. julandjo
    Recovery has definitely been bumpy for me. A few good days sprinkled among uncomfortable ones. My thing is that new food intolerances keep cropping up. Just a few days ago I determined that although I'm soy-free, my omega supplement has soy lecithin in it. I always thought I was okay with lecithin, but after a trial I realize I'm very much not okay with...
  14. julandjo
    Carrageenan - yes, it's a big problem for me too. Instant gut pain that lasts a few days. It's added to far too many foods. It's ridiculous the things we (as a society) eat day in and day out and never give a second thought to!
  15. julandjo
    Ditto this.
  16. julandjo
    You definitely need some veggies in there. Carrots are awesome dipped in sunbutter (I can't have PB). Sliced bell peppers are sweet and crunchy and packed with vitamins. Cucumber is refreshing. Peas have a lot of protein and fiber. If you like potatoes, try jicama. You cut it up raw - it's crunchy, slightly sweet and loaded with fiber. I like to sprinkle...
  17. julandjo
    I'm another one who can't tolerate coconut. It's almost as bad as getting glutened.
  18. julandjo
    Yes that's totally possible! I went and had my hair done several weeks ago. On the drive home from the salon I noticed one leg was itching, then the arm on that same side of my body, then my face and neck. I looked down and there were red spots all over me! The stylist had used hairspray on me and I liked it so much I bought a can of it. I checked the...
  19. julandjo
    Boy am I glad to have read this! I've been having SO much chest pain, and have visited the ER, my regular doctor, and most recently a cardiologist. I'm 31, and I was absolutely convinced I have a narrowed artery or other cardiac issues. The pain is often a dull pain radiating across my left chest and shoulder, down my left arm. At times it's very sharp...
  20. julandjo
    Even before my diagnosis, my husband and I have always brought our own lunches to work and rarely eat restaurant or convenience foods. It's saved our family so much money and is healthier anyway. Get some nice glass food storage containers and a big lunchbox! You can totally do this! Aside from plain potato chips, Amylu chicken sausages (love!...
  21. julandjo
    Are you letting the restaurant know after you've been glutened? I was glutened at a Ruby Tuesday, despite their gluten free menu and me going over my needs with the server AND the manager. I got online the next day when I realized I'd been gotten, and filled out a customer comment form. Within 12 hours the regional manager called me and spoke with me at...
  22. julandjo
    Ugh, I'm dreading travel. We're going to an out-of-state wedding in September. My MIL graciously is covering our hotel stay. The other day she asked me what I plan to do about food for that weekend. I said that I hope the hotel room has a fridge and microwave, but if not we'll bring a cooler and I'll get by eating cold stuff all weekend. She is highly...
  23. julandjo
  24. julandjo
    I just wanted to post an update. On everyone's advice, I gave up dairy. Man oh man did that one make me sad, but guess what? I feel AWESOME now. Seriously, the difference is night and day. If things continue to go so well I'll start trialing new foods again. I'd love to have corn back. Anyway, THANK YOU so much; I'm a new person now!
  25. julandjo
    I too am newly cutting dairy out of my diet. Is goat's milk/cheese okay to eat? I have an awesome turkey/quinoa/goat cheese meatball recipe that I LOVE. If I could continue to eat this it'll make my whole month!
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