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angel-jd1

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angel-jd1 last won the day on October 22 2011

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    Kansas

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    angel_jd1

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  1. I had the very same feeling. I didn't eat their "home baked" goodies that the other members brought either. I didn't feel safe eating them after talking to them and learning how far behind in "up to date" information they were. I was scared that I would end up sick.

    -Jessica :rolleyes:

  2. Last night I went to my first ever support group meeting. The group in town is just getting started and I thought it might be good to participate. I was really excited about finally having a local group. The air was soon let out of my balloon.

    Many of the people at the meeting were following so many "old school" rules it was rediculous. When I tried to explain differently to them, they looked at me like I was crazy, instead of taking in the info and learning. There were a few that were very interested, but many just didn't want to hear new things. Not sure why they were even there?!? <_<

    What REALLY got me was the local health food store owners were invited to the meeting, which was nice. However, they brought a couple with them who is wanting to start a gluten free bakery. They had brought some products to sample and set them out before the meeting for people to try.

    As the meeting went on, the lady of this baking couple goes "so how careful do we need to be if we bake regular items in our store". We explained to her that cross contamination was a huge issue etc etc. She then goes " well then I guess you probably shouldn't eat the products we brought" after many of the people ate them!! :angry: I guess she wasn't so careful with her baking, and pretty much didn't do any research before baking these for the group and even putting a label on them that says "GLUTEN FREE". She basically poisoned any person who had tried her products at that meeting! I was flabbergasted at their lack of concern and lack of research before attempting to feed people a products. Especially when they are running a busisness. Crazyness!!

    I had collected samples from a TON of manufacturers or I probably would have been over at that table trying their "goodies". I was at my table making sure everyone got samples of all the things that I brought. I'm so glad that I was busy, I can't afford to be sick for a week due to the stupidity (or not being educated) of others.

    The whole meeting thing wasn't what I had hoped it would be. It was a let down. I think, no i'm sure, I get more out of the information online than I EVER would in a support group meeting.

    -Jessica :rolleyes:

  3. What obstacles do people with Celiac disease face?

    i.e. at work, at home, traveling etc.

    1) I believe one huge obstacle is information. There is so much conflicting information out there for us. So many things are still confused by many people (vinegar issue being a huge one). One group of people say one thing, another group says something different. No one pays for the research to be sure who is correct with their information because Celiac Disease isn't a "money maker".

    2) Eating outside of my own home is an obstacle. If I eat at another person's home I worry about contamination and proper ingredients. If I eat out, I worry about the same thing.

    3) A person with celiac disease can not be totally "carefree" when they leave their home. They must know where they are having lunch, who is making it, what is IN it, etc etc etc. It would be so nice to not have the "worry" element when I leave and know I have to eat a meal outside of my home.

    What are the common complaints?

    i.e. about Gluten Free products?

    1) Products are very dense (double as paper weights)

    2) Products have shorter shelf life

    3) Products are very "crumbly"

    4) Some things lack taste.

    5) Celiac Disease isn't understood by the majority of the general public and even the medical community.

    6) Wish we could get more "publicity" on the disease.

    What social stigma and limitations?

    People with Celiac Disease are limited in social outings. It is very difficult to go out to eat, go to a party, celebration, trip to the zoo etc. The reason being is that food is usually a center to these activities or at least has to be considered. It is hard to find things to eat in an everday situation without planning ahead.

  4. I ran across an interesting thing earlier. It is coffee made from soy beans instead of coffee beans. The website is here: Open Original Shared Link I have no idea how much it costs, or how it tastes, but might be something to look into if you are having troubles. It says :

    But be careful!

    Not all Soy Coffees are the same. Only Soyfee is guaranteed to have

    No Pesticides

    No Insecticides

    No Caffeine!

    No Artificial flavors, Colors or Preservatives

    No Tannic Acids

    No Barley

    No Carbs

    No Sugars or added sweeteners

    Accurate nutritional values

    Kosher Certification by KO

    No glutens

    -Jessica :rolleyes:

  5. Actually there IS an in home kit that can be purchased. However, it is VERY expensive. If I remember right, when I called it was about 80 dollars for 5 tests. The tests can be used only once. Needless to say, I didn't get them. It's a great idea, but needs to be less expensive for me. Anyways....here is the info:

    Open Original Shared Link.

    ELISA Technologies, Inc.

    4581-L NW 6th Street

    Gainesville, FL. 32609

    Phone: (352)-337-3929

    FAX: (352)-337-3928

    Email: info@elisa-tek.com

    -Jessica :rolleyes:

  6. I think it is a GREAT idea!! Your biggest hurdle would be the customer base in your area. I know Denver is very large, however what is the population of Celiacs in the area? Have you tried going to support group meetings and asking people there if they would frequent that type of biz? You might get a better handle on the situation from local people, they would be the ones supporting your venture. Best of luck with it!! I know if I had a place close to me like that, i would LOVE it.

    -Jessica :rolleyes:

  7. Granny-

    I think it was just a typo.....he meant to say "top 8 allergens" meaning milk, egg, peanuts, tree nuts, fish, Crustacean shellfish, soy, and wheat.

    The bill also

    requires the Food and Drug Administration to issue final regulations defining
  8. Here are some travel links: Bob and Ruth's Has cruizes and traveling I know they are going to africa or something like that soon!!

    Bob And Ruths gluten-free Travel Club

    Open Original Shared Link

    Disney Vacations (gluten free)

    Open Original Shared Link

    Inn Seekers

    find gluten-free lodging

    Open Original Shared Link

    Lotus Tours

    Plan vacations with special things such as gluten-free meals, kosher meals, etc.

    Open Original Shared Link

    USA Natural Food Stores and Vegetarian Restaurants

    listing of health food stores in the US...great for travel!!

    Open Original Shared Link

    Hope that helps you out. I have those on the links section on my yahoo group that I own. Enjoy!!

    -Jessica :rolleyes:

  9. I wasn't intending to make you feel bad. I am only saying that there is no reason *in MY opinion* to miss such special events. It is very selfish. The day isn't about you or your husband, it is about the bride and groom. GO enjoy yourselves. Eat before or after or during. Don't make the day about food, it is about love and family.

    -Jessica :rolleyes:

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