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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
    Katrala you are very new to the diagnosis and the disease and you are so interested in being right you could care less about facts. It means nothing that she came up negative "times two." THE TESTS ARE FAULTY. Somebody wrote about the fact that they came up negative more than once on a scope until their famous celiac doctor put a camera in their intestine...
  2. sandsurfgirl
    Honestly Roda, I tell everyone he was diagnosed by blood test. Nobody is going to question that. If you go to a new doctor they will just mark it down and not ask. I got a new GI recently and he didn't say "Hey let me see those blood tests from 2 years ago." It's easier that way. The whole reason I started this thread is because I read the thread about...
  3. sandsurfgirl
    Mamaw, I always like to read your posts. I didn't know you had that thyroid treatment done. I was coping really well until I was hospitalized for the adrenal stuff. Then they told me I probably had Cushings, then they said maybe not. Now I'm retesting for Cushings, but it's looking good that I don't have it. This new health experience pushed me over...
  4. sandsurfgirl
    I'm on a combo of Nature-throid which is an Armour thyroid type prescription and Levoxyl. It made my ratios go into balance nicely but it wasn't easy to get the dose right. It took some noodling around and I went through a week where I was crawling out of my skin from being hyper until we adjusted down.
  5. sandsurfgirl
    Dear Lord where do I start with this? UGH. First of all, this woman is sick and desperate for answers, so desperate she is repeating a very invasive test and your word for her is silly? Silly? That poor woman. Your cavalier attitude is insensitive and cruel. Unbelievable from another celiac, but maybe you just didn't suffer enough to get some compassion...
  6. sandsurfgirl
    My pediatrician is very knowledgeable about celiac and she said most doctors don't know much about it as well. She also said that they estimate that if you drew a triangle and then put a line across the top fourth of the triangle that little top part would be all the people diagnosed with celiac and the rest of the triangle with the large bottom portion would...
  7. sandsurfgirl
    This statement here frankly pisses me off beyond belief. Do you know how many people on this board have had negative results on both tests, yet were near death or extremely ill and got better when they went gluten free? I personally know several people not on this board who had this happen to them. Uh, it's called gluten intolerance or gluten sensitivity...
  8. sandsurfgirl
    That would be your choice, but it would be a misguided one. There are no false positives on the blood tests. I've seen so much suffering in real life and on this board because people were told they didn't have celiac after a positive blood test and negative endoscopy. People lose years of their lives due to that type of thinking and they get more damage that...
  9. sandsurfgirl
    I've been diagnosed for nearly 2 years now. It just took me 6 months gluten free to have one symptom free day. It's been a long process. But you are right, even 2 years is not that much considering I was diagnosed at 40 and had celiac my whole life. I was hospitalized the beginning of October for an adrenal problem and was in there 10 days. I have...
  10. sandsurfgirl
    I feel like after the ordeal with celiac and taking 6 months to heal I overreact to any illness. If I get a cold I get so upset and depressed about it. I get upset and lose perspective on the severity of things. Like latey having nausea from iron supplements messing up my gut I was so down about it. Anybody else feel this way?
  11. sandsurfgirl
    I know that is a good thing! When I got out of the hospital my thyroid meds were way too high and I felt like I was crawling out of my skin and so anxious. They lowered my dose and it was this weird feeling of being frustrated that they had raised it too high but being happy that my thyroid kicked in and was working better. My dose is lower now than when...
  12. sandsurfgirl
    Sorry I got you confused with someone else. I know how you feel. I'm not dealing with an endocrine issue on top of celiac and just 10 weeks ago I was running all over Disneyland with my kids and working out. Now I'm recovering from a long bout of illness and still going through testing to rule out another condition. I have suffered from anxiety too. Hang...
  13. sandsurfgirl
    Roda that would be very hard, but you have power to mention it to people. It can't hurt if you tell a patient about your celiac disease and find a way to mention it to them. That's how I found out. The nurse had celiac at the ER and she said I sounded like her. She said ask the doc about it and when I did, a light bulb went on for him. He said "Yes! I think...
  14. sandsurfgirl
    The OTC one I have it 50 mg per day. Now my iron is 140 so it's good but they will keep testing it every few months. If it goes down again I may try the Slow Fe. Hopefully it stays up and I don't have to deal with this.
  15. sandsurfgirl
    I agree with the clean diet suggestion. I think you were on a thread about being gluten free but not necessarily eating healthy right? You've only been gluten free a short time and maybe your body needs more time to heal and the right fuel, etc. to heal. I would go on a clean diet. Eat easy to digest foods like soups that have some chicken or turkey and...
  16. sandsurfgirl
    My tummy is so sensitive right now I couldn't even eat that. I had to quit my morning coffee. My one cup of coffee per day that I look forward to and enjoy so much. I'm having black tea with almond milk in the morning. A sorry substitute. The GI doc does think it's the iron. He ran a few labs just to be certain I don't have pancreatitis and some other...
  17. sandsurfgirl
    I wonder about that too. Where do you start? There has to be an association of gastrenterologists, but many of these docs are old school and the old dogs aren't going to learn new tricks. The stories we have are downright criminal. These people should lose their licenses. I am not the suing type. I'm always the one who says don't sue but I'm wondering...
  18. sandsurfgirl
    I was talked out of testing by two different GI docs who sweetly reassured me there was no way I had celiac with big smiles. They ruined 7 years of my life as I got sicker and sicker thinking I might die and not knowing what was wrong with me. When I was finally diagnosed I was so sick it took me 6 months to heal. I have worked through so much anger over...
  19. sandsurfgirl
    Waaa! I've been there done that. I so don't want to go there again, but I may have to because I could've developed a new intolerance. Crap. Crap. Crap. I hope and hope it's just the damage from being on iron for nearly a month and it heals soon.
  20. sandsurfgirl
    Abdominal pain not part of celiac???? Please ask those doctors for me if they are smoking crack. Tell them Heather wants to know "Are you on crack?" WTF? YES absolutely celiac causes pain. Now that being said, you may want to have more testing done to be certain it isn't something else, but honestly if you have a choice, get a new doctor. Print out this...
  21. sandsurfgirl
    I posted before that I was nauseous for over 3 weeks. I finally figured out it was likely the iron that I was taking. My iron levels are great now so the doc said to stop taking it. The nausea went away after being off it for a couple of days. I ate clean so I could heal. Then for a couple of days I ate Thanksgiving type foods that have dairy in them...
  22. sandsurfgirl
    There is a grief process you have got through and I liken it to losing a loved one. Let yourself go through the stages of grief and process all the feelings associated with this. This board was my lifeline when I was diagnosed.
  23. sandsurfgirl
    If you are getting suicidal, you need to have a therapist that you can call when it happens. Maybe even be in therapy to deal with the effects of celiac so you are more prepared to deal with CC when it happens. A good therapist can give you coping strategies to get through the hard times.
  24. sandsurfgirl
    Oh honey here's a big hug!!! It gets so much better! The first couple of weeks it feels like you're in the eye of a storm. The first time I went grocery shopping I ran out of the store in a panic attack, hurried home and sobbed on my couch for like an hour. Over time you find products that are good, recipes that are good and restaurants that will accomodate...
  25. sandsurfgirl
    Get some gluten free hamburger buns so you can have a burger with a bun. It helps! There are good gluten free replacements out there. You'll learn that you can pretty much have whatever food you're craving but you might not get it right at that moment. We went to a potluck in summer and they had german chocolate cake. I wanted some so bad, so on the way home...
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