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sunny2012

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

Everything posted by sunny2012

  1. sunny2012
    I agree that you are not 100% gluten free. Tiny bits can make us sick. I was getting sick from walking in to purchase coffee in a famous doughnut chain. Then I realized breathing in the micronized flour floating in the air of an environment where so much flour is mixed might be causing it. Now a fellow worker goes in to collect the coffee.
  2. sunny2012
    I was part of the team that developed the blood testing. I find it so discouraging that so many doctors are using it to support more expensive and invasive testing instead of actually accepting the results. WORSE, the more "gluten Challenges" are accepted, the less doctors will consider this disease a serious threat to ones health and life. I very nearly...
  3. sunny2012
    My personal experience is that we Celiac's have to avoid most mixers. Alcohol made from potatoes (Vodka - check the brand) or corn is OK.
  4. sunny2012
    I was incorrectly diagnosed with Fibromyalgia for 10 years. Worst thing that ever happened to me because it signals to doctors that one is really just whining, a drug seeker, or mental. When I was so close to death that liver, kidneys, worked only nominally and I needed ambulance transport to hospital, they actually LOOKED at me. That's when they found I...
  5. sunny2012
    The blood test was supposed to eliminate the need for biopsy except in very rare cases. I was on the research to find an faster, more accurate, and less invasive method to diagnose Celiac. The biopsy can easily miss this disease for many reasons including biopsying places with no damage and taking biopsies incorrectly. I am not sure where the disconnect...
  6. sunny2012
    I'd be demanding to be put first on the list for that endoscopy. what happened to "first do no harm"?
  7. sunny2012
    First, I am glad that you are going to feel better about this diagnosis. I was on the team that researched the blood test to develop a better less invasive and faster method of diagnosing this disease. The biopsy was supposed to become necessary only in rare cases. Clearly, this is not what happened. It seems to me that we need more research to diagnose...
  8. sunny2012
    That's odd because my personal pharmacist has a binder filled with medications that have gluten. She has called manufactures and, being a professional, been able to determine that many generics are made with cheaper binders, fillers, flavorings and coloring's that are not even determined to be gluten free or not.
  9. sunny2012
    I recently had this same conversation with my family ONCE AGAIN after 20+ years of being gluten free. They started to "forget" that even tiny amounts are dangerous. We just have to consider it part of the struggle of this disease. How would hubby feel if you died from Celiac related issues? I nearly did before I was diagnosed.
  10. sunny2012
    It is always hard when medical testing is not an option. Try going gluten free and see how you feel. Once you are stable, you can add rye to see if that affects you. Then try barley and see how you feel. You deserve to feel well and have a healthy life. And both blood tests and biopsy can be inaccurate. Save up your money to eat well. Clearly bread has...
  11. sunny2012
    It is best to gently encourage her. I take gluten-free foods to people that I would actually eat again. ONce she feels better, she may start to want to continue.
  12. sunny2012
    People talk while eating. I have found pieces of bread in my drink - back when I used an open drink container. I would be suspect of anything near my desk because people will take one and pop into their mouth and talk while chewing. And like others said get it all over your desk, keyboard and papers, pencils - just about everything you touch.
  13. sunny2012
    I tend to believe only half of what the blood tests "report". My iron feel drastically recently. I was in hospital for a week. It takes about 6 months for the marrow to recover. When the doctor's office called about my recent blood tests they said, "it's just a little low. You can stop taking the iron." When I got the report it had dropped 4 points from the...
  14. sunny2012
    How long have you been gluten-free? It took me several years to be able to digest some natural carbs in veggies. I wish I remember which. But really it depends on the damaged areas and how quickly they heal. It is very individual. I just put those aside for another few months and tried again later. We can end up with other stomach issues. I still...
  15. sunny2012
    I guess I was lucky to nearly die from Celiac before being diagnosed 20 plus years ago. (long before they had identified the genes or even thought about a blood test ever showing anything about this disease. When people persist, I have a description of the real facts of being that sick. They usually understand. Sadly, many refuse to be "friends" with...
  16. sunny2012
    I'd suggest that other ideas be followed thru by those suggesting these good ideas. I for one am really weary of being shunned, ignored and unfriended in person by people who are exposed to such ignorant information as the implication that gluten is not so dangerous as say "driving around and around in really fast cars". I was so close to death (20 plus...
  17. sunny2012
    You should give your body a few months to actually heal before trying those "gluten free" labeled items off the shelf. They can leave a 100% gluten free facility and then be cross contaminated during shipping, handling, and shelving in the stores. It is best to shop around the edges of a grocery store. Purchase the fresh (or frozen) veggies and meats...
  18. sunny2012
    I have to agree about the gluten-free cupcakes, cookies, and such. Being gluten-free does not mean never watching our calories.
  19. sunny2012
    The "a last-ditch effort treatment" comment seems totally inappropriate to me! A gluten free diet is the proper treatment for Celiac. Perhaps he does this to emphasize the critical nature of a diet as a cure. There are so many people these days who think it is a fad! Just eat gluten free! I was so close to death when DX'd they could only draw a single...
  20. sunny2012
    The social aspect is the worst for me. A good friend told me to stop calling myself a Celiac. She suggested thinking about myself as, “A human being who has Ceilac disease.” I tried for a while. But every social situation includes food. I don’t eat OR I bring my own. That always leads to questions. And I end up talking about nothing but Celiac to whomever has a...
  21. sunny2012
    Would it even cross their minds to say something like, "When our idea of danger is eating walking into walls (cause we are blind), there's trouble a foot." ? OR "When our idea of danger is being bullied, there's trouble a foot."? OR "When our idea of danger is eating sugar, there's trouble a foot."? OR "When our idea of danger is having a little cancer...
  22. sunny2012
    I was diagnosed nearly 20 years ago. I clearly remember feeling better every year for about 5 years. I thought I had "healed" after that much time. What I failed to realize is just how sick I still was. I was so weary all the time (being totally gluten free) that there were days when I was really cross that someone dragged me into the hospital with one foot...
  23. sunny2012
    Mine stayed bad even after nearly two decades of gluten-free eating. I take several times the RDA of D and get plenty of sunshine. My personal theory is that that part of the intestines does not heal as well as others. It is pretty common among older adults too.
  24. sunny2012
    They know that their bread crumbs are a possible source of cross contamination due to being processed on shared equipment. They are purposely misrepresenting their product without that information. That makes it false advertising which is not allowed. They are in fact targeting the portion of public who can be made extremely ill with this falsified information...
  25. sunny2012
    I can't eat any of the cereals that are labeled "gluten free". There are many steps in the processioning plant to market shelf for cross contamination can happen. A friend of mine was constantly sick from eating corn. They researched and found that corn in their area is shipped via trucks that also ship wheat, rye, and barely without ever being cleaned between...
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