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kbtoyssni

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Everything posted by kbtoyssni

  1. kbtoyssni
    I got very sick with celiac while in grad school. I ended up dropping out because I couldn't get out of bed and the brain fog was so bad I couldn't think. I'm an engineer, using my brain is what I do and the eight months of not being diagnosed took that away from me. I had to put my life on hold while I figured out what was wrong with me. If you keep...
  2. kbtoyssni
    I disagree. It's very possible to eat veggie and gluten-free and not starve. I've been gluten-free for almost three years and mostly veggie, and I'm certainly not wasting away. Eating out is tough, but eating at home isn't. I did start eating some meat after going gluten-free (I'd been veggie for five years). I was having a lot of stomach issues for...
  3. kbtoyssni
    Try replacing bread with corn tortillas or corn chips. You can make sandwich-wraps or "scoop" sandwich fillings like egg salad. Use rice or potatoes as a base. I like to take this for lunch and add some cheese and salsa. I also take a salad everyday. You can get good pasta. Tinkyada is a favorite brand around here; I also like Mrs Leepers (found...
  4. kbtoyssni
    Caramel coloring may be made with gluten, although is usually isn't. You have to check each brand. I've never found one that wasn't gluten-free, though. Coke/Pepsi products are gluten-free. Oscar Meyer hotdogs are gluten-free. Oscar Meyer is owned by Kraft, and Kraft will always label gluten. Ketchup - depends on the brand. Heinz is gluten-free. ...
  5. kbtoyssni
    What about asking your middle schooler to help you bake bread and make other things he takes for lunch? Does he also pack his own lunch in the morning or night before or do you do that? You could maybe ask him to start helping. When I was growing up my dad would make my sandwich, but the rest of the lunch was up to me. Does he have access to a microwave...
  6. kbtoyssni

    ARCHIVED Doctor In Twin Cities

    kbtoyssni replied to jmn's topic in Doctors

    I go to Dr Ronda Stellar in Shoreview. She's a GP, but she actually knows what celiac is and tests all her women who have infertility issues for celiac. She's a great GP because I'm never going to get the evil "are you sure you have celiac" look from her.
  7. kbtoyssni
    They might be referring to people who don't have an official medical diagnosis. That would include people like me who have a very obvious positive dietary response and will never eat gluten again because I like being able to get out of bed every morning and live my life, but I did technically "choose" this lifestyle rather than have a doctor tell me to go...
  8. kbtoyssni
    I would absolutely get tested! It certainly can't hurt. With your GI symptoms plus fatigue and a family history, I'd say odds are high that you have it. Do remember that testing often results in false negatives so you may want to try the diet even if testing is negative. My main symptoms were chronic fatigue and joint/muscle pain.
  9. kbtoyssni
    The ingredients should just say "chicken" or "beef" or whatever meat you're eating. Grass fed or organic doesn't matter in terms of gluten-free. It's once you start seeing things other than the meat like flavours or chicken broth that you have to start calling. It's pretty easy to find plain meat, so I wouldn't even bother with the stuff that has other...
  10. kbtoyssni
    I have food with me all the time. I've got snacks at work, snacks in my car, snacks in my purse. I know the safe food I can get at a gas station. And I've got great friends who know what I can eat and usually have something around their places I can eat. Eating can be a challenge, but I figure I'm never that far from food. And it's not like I'll starve...
  11. kbtoyssni
    It usually comes up on the first date because the first date often involves food. I'd mention it when you first do a food-date.
  12. kbtoyssni
    I would do a few more things to try to make this new job work. First, I think you have to be more direct with the coworkers. You have to tell them you're very allergic to gluten, that you CANNOT eat at the Waffle House. I would go so far as to not go out with them if they insist on eating at places you can't eat at and you can o by yourself to a safe place...
  13. kbtoyssni
    Just wanted to add that it depends on what country. Smarties in the USA (the pastel, chalky candies) are gluten-free. Smarties in the UK (chocolate with a colored shell, like M&Ms in the US) are NOT gluten-free.
  14. kbtoyssni
    This is the worst part for me, too. I'm usually very sharp and on top of things, but when I get glutened, I sometimes forget names of people I've known for ages and can't follow a conversation. It's embarrassing.
  15. kbtoyssni
    Maybe a good way to channel that anger is to write a letter to each of the doctors explaining how much better your son is doing on the gluten-free diet and include some information about the inaccuracy of testing in young children, the risks of letting a kid go undiagnosed, and the variety of symptoms. Your letter may at least help some other kid get diagnosed...
  16. kbtoyssni
    I've found this is a huge motivator for guys to eat gluten-free, too! I know the restaurants around me, I know what I can eat off their menus, and I try to suggest a restaurant. As long as I have some say in where we go, I don't have much trouble. I'm so far past getting embarrassed about not being able to eat gluten and asking lots of questions about...
  17. kbtoyssni
    I would also say anger is part of the natural grieving/healing process. It seems very normal to be angry that your son is sick, to be angry that the doctors didn't figure it out, to be angry that they couldn't give you the diagnosis you needed. But you have dietary response, that's a valid diagnosis. Unfortunately, you were the one who had to give the...
  18. kbtoyssni
    I don't get what your friends' problem is with not bringing their own snacks, either. Do they think their children will starve if they don't have goldfish or pretzels??? It's a short party, even if their kid hates your food they'll be fine. And I think your food sounds great. What kid doesn't love watermelon and popsicles? I don't think you're self...
  19. kbtoyssni
    I would probably bring all my own food, too. Your boss obviously isn't going to make any accommodations for you and it's not worth sacrificing your health just to eat the restaurant food. I would feel no embarrassment pulling out my own food at a restaurant - make your boss do any of the necessary explanation to anyone who asks.
  20. kbtoyssni
    This is exactly what happened to me. I got my fibro diagnosis and immediately went to the library to check out every book they had on FMS. I tried 10-20 of the suggestions I found in those books. One of the suggestions happened to be eliminating gluten... and here I am today. The thing that is most frustrating is many people diagnosed with FMS are too...
  21. kbtoyssni
    I'm another one who thinks FMS is a description of symptoms and a good starting point for finding the root cause. I was also diagnosed with FMS, but when I went gluten-free, 99% of my symptoms went away. When I start to feel like I'm getting a fibro flare, I know it's time to do some digging into what I'm eating and make sure I'm not accidentally eating...
  22. kbtoyssni
    I bring whatever I want to grill wrapped in foil so I don't have to worry about CC on the grill or in the charcoal. I also bring a dish to pass that's gluten-free, and my friends are really good about not sharing spoons or dropping crumbs in my food. Otherwise I'd either not bring a dish to pass and just bring my whole meal or I'd take some of my dish out...
  23. kbtoyssni
    This one's a tough call. I tend not to eat food that's manufactured on the same equipment as wheat products. If it's just the same facility, though, I go by my own personal experience and that of other on this board. Some brands seem to have more problems than others.
  24. kbtoyssni
    I am self diagnosed (negative blood test) with a wonderful doctor who accepts dietary response. I have celiac on my records, but if I ever have trouble with insurance I'll say "prove it". Heck, I'd be willing to do a repeat blood test right now! I think it's important to tell your doc. A celiac is more prone to other autoimmune diseases so I want her...
  25. kbtoyssni
    I don't have a bracelet, but I do keep a note in my wallet in the same pouch as my drivers license saying "Celiac Disease (intolerant to wheat, barely, rye, oats), Peanut Intolerant". So if I'm unconscious and someone goes digging for my identity they should find it, and I've got it defined if they don't know what it is. And I'm guessing that most people...
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