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Ciel121

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  1. Ciel121

    ARCHIVED Crusade

    Ciel121 replied to Adalaide's topic in Coping with Celiac Disease

    That is so awesome!! I think a lot more people need to do this. It makes me furious when I see pink ribbons...seriously. I mean my grandfather died of cancer, but who isn't aware of cancer? But who is aware of Celiac? Not many. And Celiac disease can lead to cancer. I sit around wondering how many people who have cancer running around wearing those pink ribbons...
  2. Ciel121
    Thanks! And that is so funny about taking advice from forums. I have that thought all the time. I have a doctor appointment at the Celiac Center at Columbia, so I'm sure I'll get clinical answers there, but it's great to hear other stories from people. Best health to you! I hope you have many pleasant spring days walking in the sunshine. :-)
  3. Ciel121
    That's so great. I really think Celiacs needs advocates and I'm so, so passionate about promoting awareness. I see those pink ribbons everywhere and others for other causes and I wonder, where's our ribbon? So May is coming up! May is Celiac month so I hope everyone will wear the green ribbon because this is definitely one illness not enough people are aware...
  4. Ciel121
    I have had the same problem and I have been gluten-free to 4 years. I mean I did lose some weight, but not much and I had to work hard for it. It goes so slowly. I have a Nutribullet too and eat only organic. Yet at some point I realized that as wonderful and healthy as those smoothies are avocado, nuts and lots of fruit smoothies are very high in calories...
  5. Ciel121
    This is amazing to read. My father and I both have some ataxia-like symptoms and when I eliminated all processed foods I noticed it went away and I had more energy, less fatigue. But how do you avoid all processed foods all the time? Isn't that difficult? I find I can't keep it up for too long.
  6. Ciel121
    It has occurred to me recently that yes, we all try to avoid getting glutened, but what happens when you do? Can we do anything to make the symptoms more manageable? I get severe migraines mixed with severe nausea and sometimes fever. What does everyone take to feel better? I read activated charcoal helps absorb toxins. I know my dog was treated with...
  7. Ciel121
    It is so so so great to see someone bring up this topic! I can't put into words how grateful I am that someone brought this up, truly... Anyone I asked looked at me like I was crazy until I found an article online. This might be helpful: http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html I also started having symptoms of what I described...
  8. Ciel121
    I wish that were true...I have had too many experiences when servers and managers promise me my meal will be safe and I'm completely glutened over and over and over. It's always the same--they smile and promise and then I'm in pain and out for a week. I'm always polite, but I always speak up and that just never works. Restaurants and catering are completely...
  9. Ciel121
    I totally agree Gemini! I'm not the kind of Celiac to try to blend in. I find it offensive as well, but the culprits to me are the caterers and restaurants. They should be able to cater to Celiacs in our age. Really, we can send a man to the moon and have iphones and ipads, but not cater to Celiacs? In fact, I plan to tell everyone at both weddings that I...
  10. Ciel121
    I can't say enough about how comforting it is to read through all the posts on here. Sometimes when I'm down or glutenized, I just read through them till I feel better... My question though is what to do you if you have to attend a wedding? At my own wedding the catering was amazing and provided me a truly delicious gluten-free meal (with sauce!). The...
  11. Ciel121
    Wow, I thought I was the only one who got the low grade fever. I've been gluten-free for 4 years, but for me it depends on how much gluten I ingest. I once went to a "gluten-free" restaurant--clearly that was a lie. I got the most excruciating pain. The migraine was so bad I wanted to go to the emergency room, pain was unbearable, of course bloating and nausea...
  12. Ciel121
    The emotional side can be difficult. I know many Celiacs and those gluten-sensitive tend to have depression and anxiety connected to gluten as well. I have been gluten-free for 4 years and was doing so well, but recently I have struggled as well. Someome mentioned meltdowns at grocery stores...ha ha. I definitely think it's important to take one day at a...
  13. Ciel121
    Thanks so much. Yet I do know that I only get nausea and migrains from gluten although I know the raspberry ketones did upset my stomach, which didn't help. I had allergies before getting a diagnosis, but they are gone now. But I guess I really want to find more Celiac friends. Other people just don't understand. I'm still shocked after 4 years of being gluten...
  14. Ciel121
    I also think being vigilant has never worked for me. I've had servers and restaurant managers lie right to my face and reassure me that the food is gluten-free and make promises, but when I got home each time I just got very sick. I tend to do my research ahead of time before even setting foot in a restaurant. I call them ahead of time and won't go unless...
  15. Ciel121
    I have given up on restaurants completely, with the exception of two restaurants. I've noticed as everyone else on here has, that restaurants will really say anything to sell their food, but when I get home I'm the one in pain for days. I would love to find those people who told me the food is gluten-free and puts tons of aloe stems in their food--ha, who...
  16. Ciel121
    Hi All, I was diagnosed 4 years ago and was doing well until about a few months ago. It seems to be getting progressively worse. I feel nausea all the time and get migrains. I'm thinking I'm getting contaminated with something, so I started from scratch and went through my supplements, sauces and spices and I did find that some spices were probably contaminated...
  17. Ciel121
    I called Vitamin Shoppe and I was very surprised to get a real person who gave me her direct number to answer my questions. She said that Vitamin Shoppe brand vitamins are gluten-free and that I should call her back with the exact supplements I take to double check. But she did say they are labeled and gluten-free. I will call back to double check their manufacturing...
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