angel-jd1

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!! 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

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.

Vitamins in general are sometimes just very harsh, depending on what they include. Sometimes they just cause general upset (gluten-free or not). Just something to think about.

-Jessica

What is this research for? Personal interest, product development, writing an article, informing the president? ha Need more info before I shell out info.

-Jessica

Quite a few people use english muffin rings to make hamburger buns. If you do a search online you can find them. I'm sure specialty cooking stores would also carry them.

-Jessica

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

I baked a loaf of the Manna From Anna bread this weekend. It is pretty darn good. What I really like is that it can be toasted!!! I made a grilled cheese and it actually "grilled" instead of soaking up the butter! haha I also made some garlic bread for supper with the same result. It is a great product!!

-Jessica

Sounds like you REALLY need to find a good therapist to talk to. Issues like that do not arise out of nowhere and for no reason. Talk to a professional, that is their job to figure out where the feelings are comming from and why. Best wishes.

-Jessica

Italy has such a high population of people with celiac disease. I believe they test all of their children by age 7 or something like that. I have heard lots of good things about travel there. It sounds like you had a great experience also. Congrats on the fun time!!

-Jessica

Congrats!!! Keep up the good work.

-Jessica

Play Dough would be highly likely to get under finger nails also. Most 4 year olds are into gross things such as nose picking and the finger that has the playdough and whatever else goes into their mouth!! I know gross, but easily explains contamination. There are several recipes out there for gluten-free playdough. Just make your own to be safe and healthy.

-Jessica

The Kraft Parmasean cheese doesn't have any wheat flour in it in the US. Kraft clearly states the top 8 allergens on the labels. I have a can in my fridge right now and mentions nothing about wheat.

-Jessica

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

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

By putting your wafer in the same container as the others you are still being contaminated. Maybe you could have a seperate container, otherwise you may as well just eat the wheat !! ha

-Jessica

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

Very Cool thanks for sharing!! Anything to get the word out there.

-Jessica

Don't know......called the company a couple years ago when I was diagnosed and they said that all of their products contain trace amounts of gluten.

-Jessica

Hidden Valley Ranch Products are NOT gluten free...you will want to switch dressings. Their ready made dressings and packets to make yourself are ALL full of gluten sorry.

-Jessica

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

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

I forgot about this one.......... it is called Angelic Grooves. Open Original Shared Link The lady creates bracelets, necklaces, and keychains out of crystals and beads. 20% of the profits go to Celiac Research. The bracelet runs 35$, necklace is 37$, and keychain is 10.99.

This is what the website says :

Celiac Disease Awareness

Celiac disease , also known as gluten intolerance, is a genetic disorder that affects 1 in 133 Americans. Symptoms of celiac disease can range from the classic features, such as diarrhea, weight loss, and malnutrition, to latent symptoms such as isolated nutrient deficiencies but no gastrointestinal symptoms. Those affected suffer damage to the villi (shortening and villous flattening) of the intestines, when they eat specific food-grain antigens, (toxic amino acid sequences) that are found in wheat, rye, and barley. Oats have traditionally been considered to be toxic to people suffering from Celiac Disease but recent scientific studies have shown otherwise.

Both of my daughters, Halle,(6) and McKenze (3) have Celiac Disease.  Now I have been tested also and have confirmed that I have it.  For this reason I have made the Celiac Disease Awareness jewelry (green catseye with peridot Swarvoski Crystals that represent the celiac color) with an awareness ribbon for Celiac Disease. I have chosen a few fundraisers to donate 20% of profits for Celiac Disease.

20% will go to the University of Maryland Center of Celiac Research       

They do exist. They are a small green ribbon pin (like the yellow "support the troops) . They cost $5 a pin. They are put out by the University of Chicago Hospital and Northeast Ohio Celiac Support Group. I had inquired about them back in May, so not sure if they still have a supply or not, I am sure you could contact them to find out. Here is the info that I got back in May.

Jessica,

We created the celiac disease awareness pin with the Northeast Ohio Celiac Support Group to raise awareness. All proceeds of pins purchased from us will go to support the mission of our organization, which is to raise diagnosis rates for celiac disease in the US through professional and patient education.

Anyone interested in a pin should send a check to:

University of Chicago Celiac Disease Program

5839 S. Maryland Avenue, MC4065, Room C-491

Chicago, IL. 60637

For $5/ per pin plus $.60 postage for an order of 1-10 pins (more than 10, postage is $1.00)

Thanks!

Michelle

mmelinro@peds.bsd.uchicago.edu

I spent the night with no power last night.We are in the middle of a large ice storm. My back yard is FULL of tree limbs and wires (one of which i know is my cable tv). I have a HUGE limb hanging from my power wire, so I have power until that falls through! ha Then the power will be off again for 6-8 days is what the company says!!!!

It has gotten me thinking about survival type kits. I thought maybe we could list some foods that would be appropriate to keep on hand for a survival kit. I know some people keep these in their cars for those "just in case" times. Feel free to add to the list!!

-Jessica

Survival Kit List

Oberto Beef Jerky

Gatorade

Genisoy Peanut Butter Style Bars

Nuts (peanuts, cashews, sunflower seeds, almonds, pistachos etc)

Cereal

Chips

Dried Fruit

Bottled Water

Bottled Juice

Orville Reddenbacher Popcorn Cakes

Peanut Butter

Plastic Silverware

Paper Towels/Napkins

Just a little FYI.......the Barbara's Peanutbutter Puffin's cereal contains oats. Research indicates that cross contamination of oats is HIGHLY likely, so I would advise against this cereal. Also, this cereal isn't even on Barbara's Bakery gluten free list. Open Original Shared Link

-Jessica