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About fanfaire

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  1. Last October, I went to Hawaii on vacation. The plane flight was almost eight hours, and I asked the airline to provide a gluten free meal. I found out that they had discontinued this option, which meant I was going to have to bring my own food. I e-mailed the airline asking them to reconsider. I even gave them ideas on simple changes to their meals that would make them safe for a person with celiac disease or wheat allergy. They would not budge. Then, last week, to my surprise, I got a letter in the mail from the director of customer relations for the airline. Here's most of what it said: "I understand that you had previously contacted us to express your concern regarding United's decision to discontinue gluten-free meal service on our flights. As the result of the feedback provided by you and our other valued customers, I'm very pleased to advise you that as of January 6, 2005, we have reinstated gluten-free special meals on our flights. As with any business, we consider our customers' preferences and feedback in addition to our competitiveness before making changes. Because of your good comments, we were able to review and revise our policy. "Gluten-free meal service is offered on specific flights and may vary based on class of service..... "Thank you for telling us how we can be a better airline for you. We appreciate your contribution to this policy change and look forward to continuing to serve you on United Airlines....." I guess the moral of the story is to not give up. Keep writing for the services, research or public awareness you need. You never know when someone will respond.
  2. Have not been able to find any info on whether or not egg nog is safe. Does anyone know? And if the commercial brands aren't ok, does anyone have a recipe so I can make my own? This is one holiday treat I've really been missing. fanfaire
  3. I can't seem to find any info on this. I found a wonderful recipe for cheesecake (no flour) that calls for vanilla extract, but I have no idea if it's safe. Could someone who cooks please enlighten me?
  4. My favorite gluten-free bar is the Boomi Bar, the Almond Protein Plus one. It contains only almonds, honey and whey protein and tastes like an almond cookie. It has 12g of protein per bar. There are very few health bars I feel comfortable eating because I'm supposed to avoid chocolate and excess refined sugar due to other health concerns. Here's the page with the nutrition content of Almond Protein Plus: http://www.boomibar.com/FactsBoomi.asp There's also a gluten-free bar with cashews, but my local health food store doesn't carry it, so I haven't tried it yet. Hope this helps.
  5. This is a very interesting topic....I had no idea celiac disease could contribute to sleep problems. I already have plenty of problems both with fatigue and with not getting good sleep due to fibromyalgia and Sjogren's. My doctors are stumped as to how to fight this horrible fatigue. I fall asleep at church and at work, even if I've had 10 hours of sleep the night before. I can't blame my problems on the typical American diet, either. I have both celiac and gastroparesis, so in addition to no gluten, I also have to avoid sugar, fatty food, fried food, chocolate, caffeine, carbonation and citrus juice. I think if I eat one more plain broiled chicken breast I will gag. I'm afraid I have no solutions to offer on the fatigue other than to have a sleep study done to see if there is room for improvement in your nighttime sleep. I must rely on sleep aids, both over the counter and prescription...otherwise, I never reach stage 4 sleep and bounce from stage 3 to stage 1 approximately every 20 minutes, which is NOT conducive to feeling rested. Once your nighttime sleep is good, the daytime drowsiness might lessen some. I agree a lot more research needs to be done on autoimmune fatigue....I think it is the most under-treated symptom, yet one of the most debilitating.
  6. In the U.S., medical expenses that exceed 7% of your income are deductible. If you count meds, insurance, doctor's fees and lab fees along with your gluten-free food expenses, it is feasible that you could exceed 7%. In 2003, I paid over $8000 in medical NOT counting gluten-free food or all the OTC products I have to use for Sjogren's (eyedrops, special toothpaste, mouthwash, humidifier filters, etc.) Thanks for the documentation...I probably won't be able to use it since I voluntarily went gluten-free and thus have no official diagnosis, but it is VERY good info to have. We pay far too much for these specialty foods, and not all of us can easily afford them. You are a very helpful bunch, and I appreciate it.
  7. I've been trying to find an answer and am getting a lot of conflicting information. My bloodwork and biopsy were both normal, so the gastro doc said I didn't have celiac disease. Yet I was extremely symptomatic for six years, which was blamed on IBS. I voluntarily went gluten-free in November and saw dramatic improvement after two months. Could it be that since I never did eat very much gluten, even as a child, that the biopsy sampled an area that still was healthy? How likely is celiac disease in the presence of normal bloodwork and biopsy? I have a follow up with the gastro doc on Tuesday and am wondering what to tell her. Dazed and confused.
  8. AntiGluten, I'm wondering if it's possible that you have food allergies in addition to celiac disease? That it's not necessarily just gluten that sets you off. I could be wrong of course, but I thought I'd just throw that out there. Have you ruled out other autoimmune diseases? Brain fog, mood swings, etc. also occur with hypothyroidism, connective tissue disorders and fibromyalgia. I have all three of those ailments in addition to being gluten intolerant (no official celiac diagnosis). Thyroid and adrenal issues in particular can make you spacey, moody, light-headed and just feeling like you could die of exhaustion. Then again, it could certainly be hidden gluten. Just the variety of possibilities is frustrating, isn't it? Hope you do find the source of the problem. I am just now finding out what it's like to be free of stomach pain, for the first time in at least six years.
  9. Because of my many ailments, I don't get out much in public anymore. I still enjoy going to movies, though. Last weekend, I tried to find out what at the concession stand I could eat. The employees had no idea what was in what they were selling. Does anyone know the status of movie theatre popcorn? I'd bring my own food, but that isn't allowed.
  10. Thanks for that...unfortunately, none of those brands are available where I live. We have Viva, Meadow Gold, Horizon (the organic kind I'm currently eating) and store brands. I contacted Horizon to ask about this and got no reply. Hmmmm....
  11. Hope this isn't a dumb question, but I can't seem to find any info on whether cottage cheese contains gluten. I've switched to a lowfat organic variety made by a local company because it contains fewer chemicals than the national brands, but I'm still not sure. If regular cottage cheese does contain gluten, could someone tell me the suspect ingredients? Thanks!
  12. Woo hoo! Thanks so much for the list! I'm new to this also and get soooo confused and frustrated. I can't seem to remember the no-no ingredients as well as I can specific brand names, so this will help a lot. This will save me a lot of wasted energy reading labels and then putting stuff back when I am unsure. Bless you!
  13. I can definitely relate to this business of being overwhelmed by multiple illnesses! I don't even have a celiac diagnosis, which complicates things. The biopsy and the bloodwork were negative, but I do have gastroparesis (paralyzed stomach muscles), so the gastro doc was blaming all my digestive troubles on that. When I suggested in November that I try a gluten free diet, she thought it would be a waste of time. It was especially difficult since I had to combine this with the dietary modifications required for treating the gatroparesis. So in addition to no gluten, I can't have fatty food, fried food, citrus juice, caffeine, carbonation or chocolate. In fact, I was so sick in November the gastro doc wanted me to live on baby food and rice with no red meat, no nuts, no dairy, no whole fruits or vegetables. Ick. But guess what? After two months of being gluten free (I opted against the baby food diet, ha ha), for the first time in six years, no more stomach pain, diarrhea, nausea or feeling faint after visiting the restroom. I see the gastro doc for a follow-up next week, and even if she maintains I don't have celiac disease, I'm going to stay on gluten free. No way I want to go back to intestinal misery. The biggest challenge for me is having the energy to cook. In addition to the dietary issues, I have Sjogren's syndrome, fibromyalgia, chronic myofascial pain, hypothyroidism and adenomyosis. I literally spend just about every waking minute outside of my job doing something to maintain my health, and I'm losing the battle to continue working. I'm still in my 30's. More than anything, I miss just throwing on some clothes and grabbing a sandwich on my way out the door to do something fun. I don't want to haul my bottled water, pill minders, eyedrops, Kleenex, lip salve and now my own food everywhere. I'd like to hang with some friends at a bar without worrying about cigarette smoke, whether I'm going to have to leave after 10 minutes due to exhaustion, whether the air conditioning will cause my joints to stiffen up, whether the chairs are too uncomfortable to sit in or whether there's anything on the menu at all that I can eat. I had to attend a funeral last week in North Dakota and thought I would starve to death there....they didn't even have plain yogurt in the grocery store. So, yes, it definitely feels like too much. But coming to places like this helps a lot, because then I know I'm not a freak of nature. When I see how others cope, it helps me cope. Even when I'm feeling cranky. Thanks for this topic!
  14. Hi! This is my first post here, so please bear with me. I have checked all my meds against the lists provided on this site and in a book I have, but there are still two that I can't find listed. The first is Evoxac, which is for Sjogren's syndrome. The second is Domperidone, which I take for gastroparesis (also caused by Sjogren's). Does anyone know if these contain gluten, or where I can find out? Thanks!
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