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Miss Emily

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About Miss Emily

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    West Michigan
  1. Thank you, Thank you, Thank you, everyone! So, I ended up making Pasta Salad. I used tri-colored gluten free pasta, GFSFDF Italian dressing (Seeds of Change brand), cherry tomatoes, and cucumber. I also brought a bag of potatoe chips and some Bushes Baked Beans! I kept in mind the CC issue and set my food out last, right before everyone ate, and grabbed a large helping for myself before anyone else dug in! I also made sure to take extra spoonfuls so I would have plenty for myself and gave the leftovers to the hostess. I can't wait to try all of these other recipies soon! I found a recipe for the Meaty Baked Beans too Happy Father's Day!
  2. Thank you, I will take all of those suggestions into consideration!
  3. Since being diagnosed, I have gone through several phases when it comes to potlucks. First, as a newly diagnosed Celiac, I had no idea what I was doing and ate everything but the bread rolls. Then, after I learned exactly what gluten free meant, I resolved to sit in the corner and pout. After that, I avoided gatherings with food altogether. Finally, once I was comfortable and done feeling sorry for myself, I began bringing my own food. I would bring a Glutino Frozen Meal or Spaghetti in a tupperware and I was content with this for over a year. However, now, I really want to contribute. I want to bring a dish to pass that I can safely eat too! This is a huge undertaking for me, as I am Gluten Free, Dairy Free, Soy Free, and MSG/Additive Free. Also, I would like to bring something that is substantial, not just a fruit salad or veggie platter. I want to be able to go to the table and take a portion of what I brought just like everyone else. So, I need help! Ideas, recipies, anything! Please!!! Thank you
  4. Educating hosipitals is a good point, I once was brought saltines and fruit juice in my hospital bed. Lucklily I was able to speak for myself and say absolutely not! I even had an allergy wrist band on (which I had to fight to get in the first place!). I wonder how one can become a medical advocate for Celiac patients. It would be nice to perhaps give seminars and instruction to interns, nurses, etc. about caring for a patient with celiac disease. Also, set up a support system for getting food to those patients that is safe! But, legality is always an issue and I can only imagine how tricky that would be to pull off :/ I know people love free food, and that is great, but we are fortunate to have gluten free items available around here (not like a Whole Foods or anything, but some). My main focus will be group sharing and education. I have met lots of people who want to share their feelings and experiences and know that they are not alone! I was planning to have a focus topic each month and begin with a related reading followed by structured sharing. This would be the body of the meetings. I will take your advice on the medical terminology as well. I think I will speak will an attorney and get the facts about what I can and cannot say and a disclaimer to share with the group before discussion. I am also going to focus the group on diagnosed Celiacs, not gluten intolerant or wheat allergy. Even if the group stays small, it is important to me that those with Celiac and their friends and families get accurate, not confused information. And, also that they feel they are among complete peers as much as possible in the medical sense. I would love some information about how to obtain samples for goody bags and snack/break time. It would help out a great deal, as a box of Enjoy Life Allergen Free Snack Bars costs $6 here! My therapist is CAC-1, LMSW. Is that what you mean? Through working with me she has learned a great deal about Celiac and chronic illness in general. Most of all, I believe she will fill in where I leave off with emotional support. Thank you so much for responding and guiding, you have gotten me thinking about many more ideas! Please keep 'em coming!
  5. This was what I currently have for a format: LMCS Meeting Format 5:30-6pm The first 30 minutes of the meetings will be dedicated to new members or those newly diagnosed and will include a briefing on Celiac Disease, Gluten Free Living, and dispensment of Educational Materials. All members will be welcome to join. 6pm Meeting Officially Begins, Statement of LMCS By-Laws/Confidentiality 6-6:15pm Brief Introductions 6:15-6:30pm Monthly Focus Topic/Relevant Reading  Related Illnesses  Eating Out  Friends and Family  Publications  Gluten Free Hospital Stay/Medical Cards  Gluten Free Personal Products 6:30-7:15pm Structured Sharing 7:15-7:30pm Break/Snacks 7:30-7:50pm New Products 7:50-7:55pm Inspiration Quote 7:55-8pm Feedback Survey 8pm Meeting Officially Ends 8-9pm Group members are welcome to join us at Coffee Shop for informal conversation and additional Q & A.
  6. Hi MamaW! Thank you for advice. Okay, so to answer your questions... I have spoke with both the CSA and GIG, I have not yet decided if I would like to be an independent group or extension of these official associations. I am weighing my options there and deciding what will work best for our group. For one example, both groups I attended were CSA groups. This frustrated me as it seemed there was no regulation or review of these groups and how they were run. I do believe that there will be several individuals interested in joining. After both meetings I was overwhelmed with members coming up to me with questions and requesting information. It is not that they need just any support group. They are need a group with legitimate information from educated sources. Also, both groups will be an hour away from my location. As far as money goes, I have several companies willing to donate small amounts ($50 to $500) to get me started. Most of these companies are owned by friends and family. I have prepared new member packets including gluten free guides, recipies, newsletter, by laws etc. I am leaning towards not requiring dues or membership fees. I would like some input there. The local library and hospital have offered communtity rooms to hold the meetings and I am in the process of deciding which would be more beneficial. I also have an agenda prepared and viewable on our site. I have yet to decide upon having a member of the medical community present at each meeting. I consider myself a professional patient and have based my knowledge upon reading materials regarding celiac, dh, the GI tract in general, medical journals, food intolerance and chronic illness literature, etc. Although I will of course consult my gastroenterologist and find a local physician to attend regular meetings. My goal is not to simply have a member of he medical community present, but to have a physician who is thoroghly educated on celiac disease and dh. (Which can be difficult to find!) My therapist has also agreed to come and help moderate now and then. I beleive this will be beneficial for structured sharing time. At the beginning I will be providing snacks at a break time and they will be allergen free. As I don't think it is fair to have to watch others eat something you can't at a celiac meeting! I am soy and dairy free and it was so frustrating to not even have a safe zone at my support group. Later, I plan to come up with a group appropriate snack list. Thank you for your information on legal issues. I have been offered a consulation with a family friend's attorney who is willing to help me draw up By Laws, Confidentiality, Etc. However, any advice you could give would help! I love the idea of the sample bags. My biggest concern is about getting the word out about the group. I am trying to utilize all of my connections!
  7. I recently attended the local Celiac support group in my area. Unfortunately, I was very disheartened with the way it was run. For one, misinformation was being given to new members and there was no order in how the group was to function. After months of building up the courage to attend one of the meetings, it was so frustrating to not feel supported. After coming home in tears, I decided to try another support group in a larger city. The following month, I attended that meeting as well. It was worse than the first In my therapy session the next day, my therapist suggested writing down exactly what I am looking to gain from being in a support group. She said that the only way to find what you want, is to know what you need. So, I went home a made my journal entry for the day. This entry turned into a brainstorm, then five pages of ideas! It was then I decided to start my own group. (Now, I do wish to state that everyone is looking for something different. And, for some, maybe those groups were exactly what they needed. I also respect and acknowledge the hard work and efforts of the group leaders who run those groups. I imagine that in some way they are only trying to help. Therefore, I am not criticizing, only suggesting another way.) This new support group will serve West Michigan and is called Lake Michigan Celiac Support. I have started on the website www.lakemichiganceliacs.com and am currently working on a location and advertising. I hope to have the first meeting the first Monday of next month. This forum has been the single BEST thing since I was diagnosed with Celiac. Before I became a member I lived and breathed the information I found on the gluten free forum! I knew when I decided to start this group that I would find unconditional help and support through the members here. So, please let me know any words of wisdom you might have, feedback on the website construction, what you would want to see, etc. Thank you Thank you Thank you!
  8. Miss Emily

    Inspiration Short Story

    Thank you everyone for your replies! I am so glad this story helped to inspire you as well I just wanted to clarify that I did not write this story. I had credited the author in bold, Christine Miserandino, at the beginning of the topic following my introduction to it. I was told that she also has a website, www.butyoudon'tlooksick.com. I edited my post to include her title, name, and website at the bottom of the topic as well. Thanks!
  9. Miss Emily

    Inspiration Short Story

    Yes, thank you, that is why I bolded and enlarged her name at the beginning of the story. I was not aware she had a site, I was given her story through a friend.
  10. I have been chronically ill since I can rememeber. Something many of us suffer from when we have been misdiagnosed for a number of years. I struggle to have the energy to complete daily tasks and often feel very alone. This story gave me comfort. I finally was able to explain to loved ones, and even myself, what having a lifelong Chronic Ilness feels like. We are not alone! I hope it helps you as well. ~Emily The Spoon Theory by Christine Miserandino My best friend and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don
  11. Thank you to everyone who has responded. I have definently recieved a great deal of feedback. I think I have found the best route for me is to purchase Organic meats from a local source. I have even looked into purchasing an entire cow from an organic farmer. I think the less processing the safer I will be. I am also hoping that by choosing organic meat I will also avoid any chance that I am reacting to added hormones, preservatives, etc. At the very least if I start from the beginning (i.e. with the farmer!) I can follow the process and ensure the meat remains 100% gluten free. I believe for me this is very important. As there are not many items I eat every single day, but I certainly eat meat at every meal!
  12. I thought I would share the vitamin/supplement brands I have found that are Gluten Free, Casein/Dairy Free, and Soy Free. I like Pomology Vitamins because they are not huge horse pills! They are easy to swallow and don't give me an upset stomach. For supplements I like Solgar, I take L-Lysine, Calcium, and Vitamin C, also easy to swallow. Pomology (I use the Women's Daily Multivitamin Formula, they are also Vegetarian) http://www.pomology.com/ Solgar (They have a Gluten Free page on their website) http://www.solgar.com/
  13. Miss Emily

    Kissing A Non-celiac

    Oh yes! Big issue! My boyfriend always has a toothbrush and mouthwash with him, hehe. He MUST brush his teeth and rinse his mouth thoroughly or you will get glutened from him :/ My boyfriend makes certain to wash his hands and face as well. Be very careful if he drinks beer. It's a killer! My boyfriend only drinks Captain and Coke now (he's a great guy!). It's a good way to weed out the jerks and find a keeper! If he doesn't care about you or respect you enough to take these precautions he doesn't deserve you! Good luck!
  14. Thank you. Your thoughts were very helpful. I too think it is partly a cross contamination issue, as my grocer sells breaded meat items along side the ground beef and other items. Thank you too for clarifying the USDA regulations for raw meats. It is difficult to find meat where I live that does not have added ingredients such as flavorings and broths. I will have to find company information and a fresh butcher willing to answer my questions!