Co-Manager, Gluten Intolerance Group of Fargo/Moorhead
Co-Chair of the Conference
“I am a delicate flower”
Has Celiac, and DH
Has stumped teams at major medical centers including Mayo.
Talking about what it means to be Celiac.
The case of the crabbies, that newly diagnosed Celiac patients get.
You are the captain of this ship!
It’s ok to mourn, this is an EXTREME change. Cry, have a fit, whatever, then get up go. “Buck up, buttercup.”
Educate yourself. (Websites, resources, support groups, blogs, newsletters, etc.)
Not one little bit. You can’t be a little bit pregnant. You can’t eat just a little bit of gluten. According to Dr. Joseph Murray, eating 1 cookie in a month does the same damage as eating gluten all month. The longer you go Gluten Free, the less it takes to affect you.
If you’re the only Gluten Free eater in your house, isolate your food. Have utensils of your own. Use paper towels to clean. Rags and sponges can cross-contaminate.
Don’t get in a cooking rut. Try new recipes, batch cook, eat at home more often. Gluten sneaks in. Gluten on the lips is gluten contamination. Sex is GF! Gluten on hands, dig in bag of chips, or dip gluten in dip.
Eating GF is cheaper than before.
New mainstream products help.
Buy in bulk at stores and online.
Buy with a buddy and split the cost
www.mambosprouts.com – coupons for GF items.
Sign up for newsletters
Coupons sites, like coupons.com
Keep GF items separate.
Talk to the host regarding your dietary needs.
Offer to bring a dish to pass that is safe. Go first in line.
Make a GF treat that will amaze the masses, proving that you don’t have to give up taste to be GF!
Don’t struggle alone!
Join a listserv, read a blog (like this one!), create a blog, and find a gluten intolerance support group.
Make sure your bosses and co-workers are educated
Ask HR if your employer participates in FMLA
Have open discussions of understanding and expectations
If you don’t like your doctor – Get a new one!
Be your own advocate!
The Gluten Challenge is Diagnosis Suicide
Take out the gluten, see how you feel?
Body is glad you took out the gluten and will let you know that.
Pros of Gluten Challenge
-if a “cure” comes out
-likely covered with insurance.
Cons of Gluten Challenge
-Might not stomach being back on gluten for 6 weeks to get the diagnosis
Some items will never be enjoyed again.
Some will surprise you and show up GF.
Manufacturers change recipes to accommodate the GF community, by 2015, GF industry will top $15 Billion.
Be in contact with a manufacturer and ask that they tweak the recipe for a product to make it GF, case in point – Rice Krispies became GF after General Mills created GF Chex.
Don’t throw away recipes.
There are flours, buns, muffins, premade and mix pizza crusts, candy, crackers, cookies, Bisquick, Chex, Betty Crocker, soups, soy sauce, salad dressing, alfredo sauce.
Gluten Free Labels
Read every label every time!!!
Label doesn’t say? Find the contact info and contact manufacturer. You’ve gotta know!
www.ceceliasmarketplace.com (Grocery shopping guide by ingredients)
Road Tripping and Travel.
Pack ready made food, for easy meals.
Be aware of Airport rules & regulations
Research places along the route
Websites like www.urbanspoon.com lists GF restaurants by city and suburbs
Visit www.glutenfreepassport.com you can have gluten intolerance dietary needs translated into different languages. (almost 29 languages)
Dine out during a lull time
Call during down time, 2:00 pm is best.
Ask about the ingredients, and prep.
Check the website, for GF menu online.
Bring hand sanitizer when using anything community. Shakers, ketchup, mustard, etc.
Keep silverware on a napkin and not the table.
Be an advocate. For yourself. And for others.
Average time for a symptomatic person to be diagnosed is 4 years!
A child will see an average of 8 pediatricians before being diagnosed.
Only 35% of newly diagnosed patients had chronic diarrhea, proving it isn’t the prevalent symptom as assumed.
It would take 935 cruise ships to hold every American with Celiac Disease
4,400 Boeing 747 planes
US Cellular park would be filled 55 times
3 million people have Celiac Disease. 97% don’t know it.
Educate those around you.
Good friends and family WANT to help, WANT to learn
Creat a GF favorites list
Give them amended recipes
Help educate them on how to cook GF
If someone makes something you can’t eat, or that makes you sick, take the time to tell them. They want to help, help them help you.
Maintain your humor!
Seriously, when can you talk about poop this much and not get weird looks?
We know how to say quinoa right!
Who else would understand “I have been glutened so bad, I am afraid to sneeze?”
You can tell someone this gluten free food product sucks, you are saving them alot of money.
Who else can buy a $9 brownie mix, spend an hour mixing and baking it, take one bite, and throw it out?
At the end of the day.
It could ALWAYS be worse
You have an answer and new GF friends, recipes, ingredients, cookbooks, and knowledge
Someone knows what Celiac Disease or gluten intolerance is because of you
maybe other family members have been diagnosed
It is challenging and expensive, but manageable and cheaper every year!