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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
    I always advise the self diagnosed to say they have celiac and tell people it was diagnosed by blood tests. It saves you so much trouble and hassle. If you really want that card carrying diagnosis, you can do Enterolab if it hasn't been a long time for you being gluten free. The fact that gluten made you that sick for your 4 month challenge (cruel...
  2. sandsurfgirl
    I wonder if that famous specialist is named after the color of grass. I won't even get started on him and his refusal to accept anything but endoscopy as valid diagnosis. And other things. Grr.. I am so sorry that happened to you. The beautiful thing is that now you can be totally gluten free and get healed. It is totally normal to be unable to eat complex...
  3. sandsurfgirl
    It depends on how stuck you are on having traditional Thanksgiving foods. If you must have them, then maybe you can make them at home tomorrow for yourself and then bring your own plate of food with you. As long as I get Thanksgiving food sometime during this week I'm okay so we had turkey, green beans with bacon and mashed potatoes with gravy last night...
  4. sandsurfgirl
    I'm thankful to be alive because a couple of months ago I felt like I might not make it. I'm thankful for medicines that put me right. I'm thankful that celiac is treatable with diet and much of the damage is reversible.
  5. sandsurfgirl
    Ha ha I never looked at the original date! Glad he's doing better and has answers.
  6. sandsurfgirl
    If you're in remission you haven't outgrown it. It's just lurking in the shadows and you don't know when it will come back. We patients report so many non GI issues that cleared up with gluten free diet, so it's likely that the "remission" is just for GI symptoms and the person can be presenting with other things the docs aren't linking to celiac. Allergy...
  7. sandsurfgirl
    I'll pick up some peppermint today. Ginger didn't do it. I juiced it with carrots and apples. Maybe I should try it as tea? Today it's better than yesterday. I saw my GI and he agrees that it's likely all that iron. My iron is in a perfect range now so he said stay off of it and give my gut some time to heal. He said it can take a few days to get back...
  8. sandsurfgirl
    You can't take baby steps. Your health is at risk every bite you take of gluten. This is an autoimmune disease and it's serious. I don't want to scare you but you have to go cold turkey. I'm going to make a list of products I like for you to try. Gluten free is overwhelming at first but after awhile it becomes old hat. If you think about it, most of the...
  9. sandsurfgirl
    There have been some threads about cheating lately and I feel the need to share this. I have a new GI doc who is really informed about celiac and all the little particulars of the diet. He urges his celiac patients to be really vigilant about everything and avoid CC as much as we can. He has been treating a patient who had a celiac crisis and almost died...
  10. sandsurfgirl
    Exactly. The tone did sound like it was implying that we think we're superior. Believe me I have better things to do than post to people's threads on this board but the reason I'm here is to help others and get support for myself. Cheating is dangerous. Period.
  11. sandsurfgirl
    It's absolutely not in your head. Certain soy sauces are pretty low on gluten even though they contain wheat. You have suffered for 20 years and going gluten free made you better in a few days! That is what I call a miracle and you are so blessed that you found it now and not when you were 40 like me. Celiac testing will not come up positive unless...
  12. sandsurfgirl
    What a bummer. I just woke up and it seemed to be better, but I went ahead and took Zofran in case because I just can't deal with it. Supplements are so frustrating! Marz- that's what I'm afraid of. I see the GI today and I bet he will want to do a scope. But I'm an emotional wreck about everything I've been through medically in the past couple of months...
  13. sandsurfgirl
    Very common. Ice cream is a big culprit for people too.
  14. sandsurfgirl
    It's not really about being able to never give in. It's that I get so sick for so long if I get accidentally glutened I live in fear of gluten. I have a fear of crumbs getting me. I literally could not eat gluten on purpose for any reason. I suffered for 40 years before diagnosis. I lost so much of my life and my dreams because of undiagnosed celiac. Two...
  15. sandsurfgirl
    If you cheat regularly I'm not sure you've given yourself a nice long time of being totally gluten free to know if it will help. I understand why you would cheat, but it's not helping you in the long run.
  16. sandsurfgirl
    Crap Vitamin D too huh? I did stop all of them. I can't take this anymore. It's getting me so down! I finally caved and took Zofran which helped. I hate taking more drugs right now but I am going to have to. I need to check what my Vitamin D is made of. It's gluten free but soy makes me sick too. I didn't even think of soy. I don't really need...
  17. sandsurfgirl
    Disney is so good about gluten free too!
  18. sandsurfgirl
    Cbochner, what foods are you cheating with? Maybe we can give you some ideas for making them yourself or finding them at a restaurant or store. I've found great subs for most of the foods I really want. I never thought I would get those light little wafer cookies again and there they were at Sprouts made by Glutino. Schar is great. They even have light flaky...
  19. sandsurfgirl
    I hope what I said doesn't offend anybody. I am not minimizing gluten intolerance at all. I'm maximizing the seriousness of it. I think it's very serious, but people don't always take it that way. Doctors don't take it serious enough either. They tell people you're "just" intolerant so go ahead and eat some gluten once in awhile. Whereas with celiac they...
  20. sandsurfgirl
    Yeah it's been a rough time that's for sure. Glad we cleared that up! Are you talking So Cal Disney or Florida? We have passes and we go a lot.... when I'm well that is.
  21. sandsurfgirl
    My endocringologist and my primary doc are disagreeing about whether I should take it. I didn't come out anemic. I was just at the low end of the spectrum of normal on iron. My endo wants me to take it for fatigue but the primary thinks I don't need it. I can't imagine taking it on an empty stomach! I doubt I could keep it down. This nausea has been...
  22. sandsurfgirl
    I think we did too. Sorry Lisa. I am in a foul mood today too because I've been nauseous for weeks. I posted a thread about it. Let's get back to the original subject. How do you cope in general? I could use some more ideas because this nausea is obviously making me a grouch. LOL
  23. sandsurfgirl
    Instead of the thin celiac where you can't keep weight on, I got the celiac where my metabolism got messed up and losing weight has been very hard. My thin friend was moaning about not being able to lose 5 pounds. I said something about how I was a size 16 at one point and was so frustrated. She said "I would kill myself if I was that big." I cried...
  24. sandsurfgirl
    I don't like the gluten sensitive or gluten intolerant label because it makes people think they can cheat. I'm sorry you are suffering and I'm even more sorry you don't have a celiac diagnosis to make you not cheat. The tests are fraught with problems. People get false negatives. They get weird results like postive blood test but negative endoscopy. I...
  25. sandsurfgirl
    This debate always gets wacky and I'm sorry we hijacked the original thread. I don't think it gets into your blood stream, but what you said is what I'm getting at. It's going to be hard to get off your skin, especially if you then wash with gluteny soap. People have to make their own choice but over the years I've been on here I've seen more than one...
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