This can very well be the hardest of them all. You would think that the people closest to you would be the ones who would be the most understanding and supportive of your disease. Unfortunately this is not always the case. For this you need thick skin and a strong spine. You cannot budge on your need to be gluten-free; your health is at stake. Even harder are the times where you’re with your friends and loved ones and they mean well, but simply don’t understand and because their ignorance is to blame you don’t feel quite right getting angry or upset. So much of our lives is centered around food — particularly, here in the US, around gluten-y food.
You’re going to have to explain to your friends and family what Celiac Disease is and why it’s important that gluten needs to be out of your life. They need to know that it’s not a choice, that it’s not just you being picky about your food, and that is a very real and serious condition.
People can get so crazy when it comes to food. They can get extremely stubborn, too. Anything outside of normal is frowned upon.
Fortunately we have many options available to us that will help us communicate our gluten intolerance. Facebook, Twitter, and other forms of social media are great ways for you to post links and share information with the technically-savvy. When that isn’t feasible or appropriate, you can always keep it simple and say:
I have Celiac Disease, which means that stuff called gluten, found in wheat, barley, rye and sometimes oats, makes me sick and can cause permanent damage, even if I eat the tiniest little bit.
People can be weird about food. They try to test your limits. “Oh just one bite won’t hurt you, I spent all day making it!” “Just try it, it won’t kill you.” “Why are you so picky?”
Then there’s the holidays. Suggest potlucks when you can – at least then you are sure you’ll be able to bring something that is safe for you to eat. Try and make sure to serve yourself first (or make up a plate before you get there) to prevent any cross-contamination before you get your own serving.
Looking for ideas on what to bring to potlucks? I’ve made bbq pulled pork (A&W Root Beer is GF, Sweet Baby Ray’s BBQ sauce is GF), pumpkin-pork soup (recipe coming!), pot roast, and strawberry spinach salad, all with great success.
There are tons of gluten-free recipes online too. Check out my links section to find online recipes.
For the brave and culinarily-skilled (is that a word?), you can even try hosting the event at your house and cooking all the food yourself. While it certainly would be a daunting task (especially for Thanksgiving) you would be rewarded with a full meal without the worry of contamination and you’d get to show other people how delicious gluten-free food can really be.
Even though I am fortunate to have friends and family who understand and aren’t insulted when I bring my own dinner to their party, I still feel self-conscious and a tad guilty. I think that one of the hardest things to change is our own personal feelings about ourselves and our gluten-free life. It can be tough when social events are centered around food — and that isn’t just for us: it’s tough for anyone with any dietary needs that aren’t the cultural norm. When I figure out how long it takes to no longer care, I’ll let you know ;)
In the meantime, if you’re finding yourself up against a wall, there’s no better way to vent your frustration than to turn to a local support group, online forum, or email discussion group.
I highly, HIGHLY recommend that you join some sort of social network that will help guide you and support you through the newly diagnosed period of your life. Heck, I recommend it even for the seasoned Celiac.
Where to find a local support group:
- www.meetup.com Try doing a search for “Celiac” in your area and see if anything pops up. Meetup is a website that lets anyone create a group for local interests. There are groups for hiking, bird watching, foodies, ballroom dancing, all sorts of stuff. If there isn’t a group already formed in your area you could always try starting one up yourself!
- The Gluten Intolerance Group has a list of their local branches: http://www.gluten.net/local-branches.aspx
- The Celiac Sprue Association also has a list of local chapters: http://www.csaceliacs.info/find.jsp
- Call your local hospital and ask if they know of any classes or meetings that are being held. Sometimes the hospital will host their own group.
- Still nothing? Try searching online for “celiac support group in _______” and add your location.
Online support groups/forums:
- http://www.celiac.com/gluten-free/ This is the forum I joined when I was first diagnosed. There are a lot of helpful people here, and you definitely will get some good advice!
- http://forums.delphiforums.com/celiac/start Another popular forum, unfortunately I am not as familiar with this one.
- http://groups.yahoo.com/search?query=celiac Here’s a list of Celiac-centered yahoo groups. These function like forums, only it’s more like a giant email list of people who have conversations with each other.
There are many more forums and groups out there, so if you don’t like the ones I have listed here take a look around and see if you can find one you like. The ones I have listed are the most popular and seem to have the best quality of discussions.
It can also be extremely helpful to be able to speak with a healthcare professional that understands the disease and who can empathize with you. If you are lucky, your primary care doctor will be able to fill this role for you. If not, you might be able to find this support elsewhere. Here is a list of healthcare professionals who are exceptionally aware of Celiac. While it looks like this list is simply a voluntary sign-up (and doesn’t necessarily promise any level of expertise) it certainly can’t hurt to investigate the option if you live near one of the people listed.
Where have you found support? Share your recommendations below.