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kbtoyssni

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Everything posted by kbtoyssni

  1. kbtoyssni
    My note says "patient has celiac disease and must carry specific foods with her". Of course, I always get the "what does SPECIFIC FOODS mean"? Well, anything without WBRO, it doesn't matter what... Most of the time I don't have to show my note. You start talking about food allergies and the door checker's eyes start glassing over and they just let you...
  2. kbtoyssni
    I think most would be genuinely concerned about your health. It's an awkward and sensitive topic to bring up. I would reply something along the lines of "no, but I do have other serious medical conditions that affect my weight, and I am conscious of (or working towards) my health". For the people who are joking around - that makes me mad. You don...
  3. kbtoyssni
    Some people like to do a followup visit to test their antibody levels. This can show how compliant you're being with the diet, especially when you don't have symptoms to "remind" you when you mess up! But I wouldn't do that for a year or so. Unless you're still having symptoms or want to ask a lot of questions, I don't see the need for a follow up.
  4. kbtoyssni
    I am cringing a little bit at the thought of trying to keep yourself safe in a kitchen that has wheat flour in it. Especially since celiac is a progressive disease - you may not test positive now, but if you are celiac and continue to damage your intestines this could be very damaging to your health.
  5. kbtoyssni
    When you are part of a family, it's not about the individual. It's a give-and-take, creating a safe space for the group as a whole. Your need to be strictly gluten-free carries much more weight than another family member's want to eat gluten bread. Having a gluten-free house may be mildly inconvenient to those family member who don't need to be gluten...
  6. kbtoyssni
    Another way to get in faster is to have your referring doc call the specialist and ask for an appointment for you. They somehow manage to find time to slot you in if a doctor's asking for the appointment! Or you can call about cancellations every morning, but that gets old...
  7. kbtoyssni
    I agree with everyone else on the flour - if I had a shared household, flour would be one of the few things I would refuse to have in my house. I have some celephon pans, and I would not be concerned about continuing to use them if they'd had a good scrub. Do you have the kind that are very heavy-duty with no coating? Mine are almost like stainless steel...
  8. kbtoyssni
    Lactase, the stuff that digests lactose, is produced by the tips of your villi so if you have a lot of villi damage, lactose digestion will be difficult. Casein, the protein in dairy, and soy tend to be additional intolerances that celiacs get. Not sure of the exact workings, but I'm wondering if once some bodies starts reacting to the gluten protein...
  9. kbtoyssni
    I've been having the same problem with crashing and getting hungry on rides - I'm going to whip up a batch of pancakes for PB&B pancake sandwiches. This is the trouble with getting in shape - when I could only do 10-15 miles food wasn't an issue! Do any of you bring Gatorade with you instead of water? I was thinking of trying that. I'm in Minnesota...
  10. kbtoyssni
    I'm guessing most non-gluten-free 11-year-olds don't realize the severity of the disease. After all, how many times have we heard from grown-up friends and family "one little bite won't hurt". And she might see your daughter eating (gluten-free) cookies and think that a bit of cookie is ok. Or she may have forgotten that cookies have gluten - it's easy...
  11. kbtoyssni
    I use gluten free personal care products. You are correct that you have to ingest it to react (although some do react from it being on the skin, mostly those with DH), but I think it's just too risky. I'm constantly fidgeting with my hair, leaning my face on my hands, etc. I don't see how I could possibly not accidentally ingest some. And taking a shower...
  12. kbtoyssni
    Yes, you could be non-celiac gluten intolerant or a celiac who doesn't have enough damage to test positive yet. If you're noticing behavioral changes relating to gluten, it sounds like you have some issue with gluten.
  13. kbtoyssni
    How long has this been happening? I just started ramping up on biking (from doing nothing for six months due to illness to now doing 30miles at a time). My muscles and joints hurt and I was exhausted and hungry all the time. I ice my knees or other joints that tend to bother me as soon as I get home. I stretch to loosen my muscles. I take a bath with...
  14. kbtoyssni
    So is your doctor saying that gluten is basic and thus increases the Ph of the stomach? I don't really understand this. And why would other grains not have the same effect? This reminds me of my months 9-15 of being gluten-free. I started feeling sick again and occasionally throwing up. I eventually cut out peanuts which helped, and the rest of my...
  15. kbtoyssni
    I love this! I might do this myself since there's a possibility I might have to change doctors soon (due to moving, not to incompetence, my current doc is very celiac-aware so I hate to give her up).
  16. kbtoyssni
    So how is she diagnosed with celiac? Are you doing a self-diagnosis due to her spelt reaction? Spelt is a distant/ancient form of wheat that is usually ok for wheat-allergic people, but maybe she is allergic to both. Does she have problems with rye or barley?
  17. kbtoyssni
    A wheat allergy has nothing to do with celiac/gluten intolerance. They are different reactions. Your daughter is obviously allergic; she may also be celiac or gluten intolerant.
  18. kbtoyssni
    Yes, everyone has celiac the same way. If you've been diagnosed, you've got it. We all have different symptoms, but we all have to be 100% gluten-free. Sounds like your immediate symptoms aren't that bad, but you're still doing a lot of damage and this will eventually lead to other autoimmune diseases, cancer, neurological symptoms, etc. You don't want...
  19. kbtoyssni
    Really!!???!! Your doctor said that??? I think this one wins my "worst/stupidest things a doc has said" contest!
  20. kbtoyssni
    Also, how was she diagnosed? If it's a self-diagnosis, it could be that she's got some other issue causing gluten intolerance like Lyme disease. Is she around chemicals or people wearing perfume or places with new carpeting? Chemicals used to make me throw up all the time. They don't have to be strong chemicals, either. The place that made me most...
  21. kbtoyssni
    Oh, woah, I totally missed the part about her being gluten-free for 1-1/2 years already! Those are not normal symptoms for people on a gluten-free diet! I'd say she's either not completely gluten-free (have you checked pet food, personal care products, CC at home, "risky" foods like Cheetos/Doritos, going out to eat a lot, etc?) or she's got other food...
  22. kbtoyssni
    I should have been more specific. I only buy the prepacked stuff - Hormel (labeled gluten-free) or Oscar Meyer (owned by Kraft), etc. I only buy the deli sliced stuff at my gluten-free store where all their meat is gluten-free. Pasta salad or egg salad or tuna salad is good, too. I eat egg and tuna salad on corn tortillas or lettuce wraps or just...
  23. kbtoyssni
    I used to throw up. I haven't recently, though. Everyone's symptoms are so different that I'm not surprised that the small group of celiacs you talked to didn't have the same symptoms as your daughter.
  24. kbtoyssni
    Crackers or corn chips topped with cheese, deli meat, tomato, lettuce. Spring rolls. Cake. String cheese.
  25. kbtoyssni
    I don't get it. What the heck does he think would cause blunted villi if it's not celiac??? You could request your films and take them to a different GI for interpretation. But I'd just go gluten-free if I were you. Celiac can also cause depression - hopefully that will go away after a while of being gluten-free.
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