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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
    Yes and yes and yes! Saying that you have celiac does make others take it more seriously and that has real world consequences from family relationships, to friendships, to people keeping you safe and not glutening you on accident or on purpose. I always tell people to use the words allergic and allergy in restaurants and eating situations because it makes...
  2. sandsurfgirl
    Your hubby is a keeper!
  3. sandsurfgirl
    Between his seizures and all his other issues, we went to about 6 docs. Even the latest one who is very good about celiac said to just to gluten light on him but I knew better.
  4. sandsurfgirl
    Thanks Irishheart. I will get NOW brand.
  5. sandsurfgirl
    Being in the UK this puts you in a bind doesn't it? It's my understanding that you can't get government benefits for gluten free foods if you don't have that endoscopy right? Every time I see a UK celiac I feel so sad for them because you have to go through so much to get diagnosed and the system takes so long for you to get to see a specialist. Positive...
  6. sandsurfgirl
    Good. Then it's just irritation. What a bummer. I was so overwhelmed with getting out of a long hospital stay and dealing with new illness and whatnot, I read the label and it said wheat free, gluten free and dairy free and I didn't read further. I can't believe I did that to myself.
  7. sandsurfgirl
    I posted before that I was nauseous for like a month and we finally figured out it was my supplements. I went off iron and felt a little better but I've still been having problems. My gut is so sensitive I am on a bland diet again and I've been off iron for a week. After Chad posted that his Vitamin D had soy in it, I decided to do some checking. Turns...
  8. sandsurfgirl
    You're welcome My son is a different child after going gluten free despite negative blood tests. His baby and toddler years were so hard. So very very hard. He had quit growing and after he went gluten free he is normal height.
  9. sandsurfgirl
    And yet they still call endoscopy the gold standard for diagnosis. I'd call it fool's gold. Who is that famous celiac doc in San Diego? Dr. Green? I called their office when I first was diagnosed by blood tests and they refused to even see me if I hadn't been diagnosed by endoscopy. They won't even make you an appointment. They said I had to do a gluten...
  10. sandsurfgirl
    Thank you!
  11. sandsurfgirl
    Celtic Queen your point is important. Many celiacs don't even have gastro issues at all and most have so many other symptoms on top of gastro. When they do studies, I don't think they take that into account either and that's important. Symptoms should mean all symptoms not just gastro ones.
  12. sandsurfgirl
    Dontcha love that you can come her to talk about those things and nobody will think you're weird. But you need to go play some video games or something to distract yourself because you are overanalyzing a giant ball of gas. Ha haha!
  13. sandsurfgirl
    LOL Yes back to my rant!!! The fact that there has been an argument about this just goes right along with the nonsense that happens with testing. It's not cut and dry and the paths aren't clear. There aren't too many "typical" celiacs because it presents so many ways, further complicating matters. I told my new GI how I was talked out of testing...
  14. sandsurfgirl
    There are no false positives on the blood tests. If your blood test is positive you have celiac. Don't let an uninformed doctor tell you differently. There are many stories on this board of people who were told by ignorant doctors they could keep eating gluten even after a positive blood test and years later they were extremely ill when they finally went...
  15. sandsurfgirl
    You're joking right? Please tell me the science behind that statement. I'd love to hear it. There is zero rationale for that. In the case of a food allergy, eating the same food over and over again can cause an allergy but this is not allergy, not histamine response and you aren't talking about eating the same food over and over again. So I don't see...
  16. sandsurfgirl
    I had good periods too. I've had it my whole life but after I had my first child was when it got really bad. I started getting other things like constant sinus and bronchial infections due to the inflammation too. So there were times when my GI symptoms weren't there but I had other stuff going on.
  17. sandsurfgirl
    Is there any stone unturned for hidden gluten for you? Are you in a completely gluten free home? Are all of your beauty products gluten free? I'm just wondering if there's something you haven't thought of yet. I've seen wheat in hand sanitizer of all things. Can't remember the brand.
  18. sandsurfgirl
    Gemini I am so sorry your husband has gone through this. His story like everyone else demonstrates perfectly how serious the flaws in these tests are. The flaws in lack of education for doctors. The flaws in the entire system when it comes to this disease. The sad thing is that those of us who are passionate and knowledgeable about what needs to change...
  19. sandsurfgirl
    Here's a good example of how faulty the tests are. Two of the women who post here have become close personal friends of mine. One of them was misdiagnosed with lupus and put on very strong medications for years that made her really sick. She was in and out of hospitals, treated for adrenal insufficiency- more strong medication and was nearly dying. On...
  20. sandsurfgirl

    ARCHIVED Soy

    sandsurfgirl replied to Chad Sines's topic in Coping with Celiac Disease

    The lecithin doesn't bother me but soy flour or soymilk, major major pain. Soybean oil has been okay. I have no idea why.
  21. sandsurfgirl
    Sorbitol and Mannitol both have reputations for causing tummy problems. Hope you feel better soon.
  22. sandsurfgirl
    If she is a friend of yours, then get her on this site. Go over everything with her and make sure she is totally gluten free including her cosmetics and beauty products. Support her in going clean in her diet and cutting out the usual other offenders like dairy and soy for awhile. Let her know that you found out from people who have lived it that is is...
  23. sandsurfgirl
    I don't know if gluten would stick on glass after it goes through those high powered dishwashers, but... I know sometimes they will handwash a glass at a bar if they're busy and need a glass fast. Do they switch that tap out with beer sometimes? Is it possible the tap is getting contaminated or the lines?
  24. sandsurfgirl
    You poor thing! It's so hard having regular colds and stuff when you're already dealing with celiac. You need that doctor's note first of all. If you need rest then you need it. Only you know when and how far to push yourself. Don't give up on your grades. Ask your teachers for help. Tell them what's going on and ask if you can have more time on some...
  25. sandsurfgirl
    I wouldn't think it would do damage, but you never know about inflammation. The villi are damaged so they aren't able to produce lactase enzyme to digest dairy. When the villi heal many can eat dairy again, but not all. It's complicated unfortunately. If you are newly gluten free, I would say going off dairy would help you heal and hopefully you can eat...
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