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sandsurfgirl

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by sandsurfgirl

  1. sandsurfgirl
    Thanks! I love stories like that. People generally don't want to be responsible for making someone sick. I have so many stories like that. We went to a brunch buffet for a family celebration. I was so worried about it. The chef (a very hot chef I might add) came down and gave me a tour of the entire buffet, went over ingredients with me and told me what...
  2. sandsurfgirl
    You may even meet some real life friends from this board. Two of my greatest and most wonderful friends I met from this very board! We go out for gluten free girls nights and gripe about celiac on the phone and it's great. With all the info I get here I recruited a celiac. I got a friend to realize that she and her kids needed to go gluten free. They...
  3. sandsurfgirl
    I hear the anguish in your posts and it makes my heart hurt for you. You have celiac disease! Screw the tests. The tests are faulty. They are inaccurate. They are barbaric. Your doctor is barbaric and uneducated. Dietary response IS a valid form of diagnosis. My son was diagnosed from dietary response and his little 7 year old life is changed forever...
  4. sandsurfgirl
    In my opinion, if gluten makes you sick you have celiac disease. The testing is faulty and unreliable. There are far too many false negatives. I don't believe one bit in gluten intolerance or gluten sensitivity. The tests are wrong. Until there are more reliable tests so many will suffer needlessly worrying and wondering if they really have celiac or not...
  5. sandsurfgirl
    It can take months for problems to resolve. I am not a kid of course, but it was 6 months before I had one symptoms free day. Just ONE day. Your child is getting better. There hasn't been any vomiting. It is torturous to put him back on gluten if it makes him sick. If he gets sick when he starts eating it again I would seriously consider not doing the...
  6. sandsurfgirl
    You have found a gem of a GI doctor. That is rare and hard to find. So many of them are clueless and lead people down the wrong path. So many of them say the endoscopy is the gold standard, yet there are tons of people on this board who had a "normal" endoscopy but positive blood tests or the other way around. Or they come up negative on endoscopy but they...
  7. sandsurfgirl
    Oh wow I was posting from my phone and I couldn't see your avatar. I applaud your efforts, but wow I cannot imagine your protesting and approach trying to make things illegal is going to get you anywhere. My word if I owned a restaurant and saw you coming I would do everything in my power to NEVER ever try to help someone with an allergy. I'd just cover it...
  8. sandsurfgirl
    Hopefully your friend learns her lesson. Painful, horrible lesson but what she did was pretty crazy. Taking a bite is bad enough but eating a whole piece of cake. That's like swallowing a whole bottle of bleach or eating a box of rat poison as far as I'm concerned. It's always amazing to me when people cheat. I live in fear of crumbs. I made my 3 year...
  9. sandsurfgirl
    Were you gluten light when you got tested? My son who is 7 was negative on blood about 6 months ago but he ate a lot of what I ate gluten free. He chose to go gluten free cuz he was sick of being sick. Now trace CC gets him bad. So... he is a celiac. People don't get 3 days of diarrhea from one tiny milky way bite size like my son did at Halloween if they...
  10. sandsurfgirl
    I appreciate Domino's for trying, but honestly I think it's a bit ridiculous to order pizza from a big chain like Domino's and expect not to be CC'd. There is just no way with the speed they work and the flour everywhere. If you are sensitive like most of us are, why on earth would you even attempt to eat Domino's?
  11. sandsurfgirl
    The problem is your inflammatory language. You can "take them to task" and use words like ILLEGAL in all caps and "false advertising" but sadly this type of overreaction is just going to screw every single celiac in your country. Restaurants do not have to accommodate food allergies and celiac disease. If I owned a restaurant, honestly I may not bother to...
  12. sandsurfgirl
    Are you using soaps and shampoos etc that don't contain gluten? I did not get better until I deglutened my products. There are very few products that will actually claim gluten free, but the only gluten I've ever found says wheat oil, wheat extract, wheat whatever on the label. Never seen malt, barley or rye in a product. Tocopherols technically can be...
  13. sandsurfgirl
    No this is painful bloating, like my gut is a balloon that has been inflated too far and is about to pop. It literally looks like a round ball, like a pregnant belly. I do not want to go back to the ER but I may have to if this doesn't calm down.
  14. sandsurfgirl
    How long does it take for it to go away? I swear people are going to start asking if I'm pregnant I'm so bloated. I'm going back to the liquid diet again. They told me to do liquids and go very slowly introducing foods. I was so hungry I think I went too fast. Back to square one. I didn't eat anything crazy, but even simple chicken soup with zucchini...
  15. sandsurfgirl
    This is so frustrating. Everything i eat is bothering me and I'm on a bland clean diet. I feel like I'm back to the old withdrawal days when I first went gluten free and my gut was a disaster. I thought I was past all this and here I am with a messed up gut again. So frustrated. The bloat is the worst. I look pregnant and it makes me not want to leave...
  16. sandsurfgirl
    I 100% agree about lotions, soaps and shampoos. I did not start really improving until I de-glutened my bathroom. Soap and lotions stays on your hands and shampoo drips down your face in the shower. One of the nastiest glutenings I got was when I put a leave in conditioner by Redken in my hair in a dumb blonde moment, forgetting it was full of like 3...
  17. sandsurfgirl
    If going gluten free made you feel better then you have celiac disease in my opinion. You have all the symptoms, including being malnourished but overweight. Being unable to lose weight IS a celiac symptom. The celiac doc I went to explained that your body goes into famine mode and hangs onto every calorie it can get. I've been gluten free for a year...
  18. sandsurfgirl
    I am so sorry you had to deal with that. Are you self diagnosed? If you are I recommend that you never tell anyone that. Tell them the blood tests were positive. They will never know the difference. Actually if you change doctors I would tell them the same thing. No new doctor ever asked me to see original bloodwork to diagnose hypothyroidism. I told...
  19. sandsurfgirl
    Thanks for clarifying. I get what you're saying. Maybe I will read that book.
  20. sandsurfgirl
    I've never seen gluten in a hot dog. Isn't Kamut a form of wheat? I thought Kamut was not safe.
  21. sandsurfgirl
    If I was younger I would have like 6 kids and if several of them turned up celiac we would have awesome pot lucks when they grew up. Celiac sucks at times but my life is good! My son's life is good. Did he bawl today about pizza and cupcakes at a birthday party? Yep. He's only 7. But you know what. I ran to the store and grabbed a little gluten free pizza...
  22. sandsurfgirl
    My celiac son is an incredible little boy and this world needs my son!!! I'm sorry Karl but your attitude is childish and narcissistic. You can't have it all in this life and your words remind me of Hitler who wanted the perfect race, only people with no flaws in this world. One of the most awe inspiring motivational speakers on this planet has no arms...
  23. sandsurfgirl
    She's too little now to notice if she's not eating what other kids eat, but as she gets older you will want to keep treats on hand for doing stuff with other kids. I always have Betty Crocker gluten free yellow and chocolate cake mixes on hand so I can whip up some cupcakes for a birthday party or other event. I always keep a can of frosting in my cupboard...
  24. sandsurfgirl
    I used to ride and my horse colicked really bad for no reason one time too. With the wet conditions I wonder if yours got moldy hay. It just takes a teeny bit and maybe he got a bite from where the mold just started to grow. At any rate, it sounds like animals and people can get colitis as a mystery disease. Thanks for the links. I have...
  25. sandsurfgirl
    Oddly the pain was very low near my bladder. I felt the constant urge to pee and I had cramps like really bad period cramps (which makes no sense to the boys, sorry). Then I got the pain in my sides. I got really bloated and my whole belly hurt at one point, but the majority of pain was low in the middle above the pubic bone. Doc said that's referred pain...
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