Good day to you.  I’m very pleased to introduce Claire Baker as a special guestblogger on my blog.  Claire is a very influential celiac, nutritional personality and is on social media with her thoughts, ideals, and philosophies in regard to living gluten-free and being a survivor of celiac.

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About Claire Baker: 

Claire Baker has worked in community-based non-profit organizations in Philadelphia PA for 20 years and has a wealth of experience in engaging communities around political, health, and urban greening initiatives (here is her profile is on Linkedin).  She was diagnosed with celiac disease in 2010 and started So What CAN You Eat? to help others on their celiac journey.  In addition to coaching and resources, she is the author of So What CAN You Eat? Gluten-Free Paleo Vegan (mostly) Recipes for Health and Weight Loss available on Kindle at Amazon.com and the Quickstart Guide to Living Happy, Healthy and Gluten-free, available for free when you sign up for the mailing list.

She and her partner of 22 years have two boys, ages 11 and 8. Her kids have assisted her with a series of fun gluten-free product video reviews on youtube at www.youtube.com/clairebakerok.  You can learn more about Claire at www.clairebakerok.com, on Facebook at www.facebook.com/happyhealthyglutenfree, and twitter at www.twitter.com/clairebakerok.  And, if you live in the Philadelphia region, check out the gatherings at www.meetup.com/Gluten-free-in-Delaware-County.

Without further ado, here’s Claire Baker’s blogpost:

Finding or creating support if you are new to Celiac (or even if you’re not!)

I was pleased when Dougie asked me to write this blogpost about finding and creating a supportive network.  Dougie has built a remarkable following on Twitter and regularly tweets encouraging and educational celiac information.  While I rely on social media and the internet for support, I have done the majority of my celiac community-building in person.  Either way, it can be challenging to finding kindred celiac spirits out there.  In this post I offer some key techniques gleaned from my work in community organizing to help you find or build a community of your own.

From personal experience, I know that there is a certain amount of freaking out upon getting that initial diagnosis — after all, life as we know it, dietarily speaking, abruptly comes to an end.  The kitchen becomes a minefield.  Restaurants are new gauntlets to run.  We think that without the traditional stuffing and pumpkin pie recipe the holidays are ruined.  And then, little by little, we settle into our “new normal” and begin figuring out how to manage it all.  One great aid in having a pleasant journey is traveling it with family and friends who either “get it” or who support us anyway.

But not everyone has a supportive base of family and friends.  Some folks don’t get it.  Numerous examples abound out there.  Here’s a recent one posted at http://glutendude.com.  Sad, but it happens.  And what if your closest circle of supporters WANTS to help but doesn’t know how, and you don’t have the energy to educate all of them while you are trying to educate yourself at the same time?

We all need to know that we are not in this alone.  We all want to have a space where we don’t have to explain it.  And just as important, we need to find a way to be able to help others and share the gifts of our own experience.  There are a number of ways to approach finding and building a supportive network.  And there is a lot of good advice on the internet about how to find a support group.  In brief, here are my best bets to find existing support:

  • Ask the doctor or practice that identified your celiac for information about support groups.  Hospitals with a strong GI focus may also host a group or know of one.
  • Check the Gluten Intolerance Group website for a branch near you: http://www.gluten.net/local-branches.aspx
  • Google “Celiac Support Group” and the name of your city or region and see what comes up.
  • Go to www.meetup.com and see if there is a gluten-free or celiac meetup group near you.  It’s free and easy to lots of different kinds of affinity groups.
  • Seek support on-line.  Twitter is a great way to connect for conversation though it does take a little getting used to (you are limited to 140 characters per tweet, and just because you tweet something doesn’t necessarily mean someone will tweet you back.)  Be sure to “follow” GFDougie and Clairebakerok!
  • Join the celiac listserv and ask them about a group in your area.  Though it is a little old school, the celiac listserv is huge, with people from all over.  The collective knowledge and experience in that group is astounding and is underutilized in the celiac community.  Learn more here and send an email with the word “Subscribe” to CELIAC-subscribe-request@LISTSERV.ICORS.ORG.

You did all of these things and still came up with nothing?  Don’t give up!  You can start your own support group.  I started Gluten-free Delaware County (GFDC) to fill a gap I found in my region.  To start your own group, you’ll need to have some patience and perseverance.  Nothing gets created overnight, and it will take a bit of work to grow and keep it invigorated, but the payoff you’ll get in support and new friends is well worth it.  And you’ll have the satisfaction of being there when others who are newly diagnosed or new to your area need what you were looking for not that long ago.  Here are my steps for creating and sustaining a group of which can be your own:

  1. Decide what kind of group you want
  2. Pick a place, date and time for your first gathering
  3. Find the people and invite them
  4. Follow through, even if only one other person shows up
  5. Work with the people who show up to help decide the details of the next gathering
  6. Do it all over again

Decide what you want.  Mutual support?  Informational/educational meetings?  Potlucks?  Restaurant outings?  I created Gluten-free Delaware County (GFDC) to be mostly fun, mutual support, and food-centric.  I thought at first we’d meet at a community space and do potlucks or something, but after I hit a roadblock with finding a welcoming and free space, I modified my first gathering to be a weekend lunch at a chain restaurant that had a gluten-free menu.  My real goal was getting people together, and I figured I could get ideas for a potluck or presentation venue from the group.

Pick a place, date and time for your gathering.  I described the highly scientific approach above.  😉  The important thing is to just decide, but give yourself enough lead time on the date you select so that you have time to reach out to others who may be interested.  And since you will be reaching out to people you don’t know, for personal and safety reasons you may want to meet in a public place, at least for your first couple of gatherings.

Find the people and invite them.  Make a flyer and take it to your doctor’s office, the local health food store, chiropractor, yoga studio, and other outlets you find important.  Tell them what you are doing, ask if you can make the flyer available and if they can share the info with other patients/clients/customers.  Talk about it with your friends – it seems like more and more people know other people who are eating gluten-free these days.  Ask if such gluten-free notifications can be posted in your church bulletin or local community newspaper.   Put a flyer up in the library or at the store or at the hair dresser’s.  See if you can visit local community meetings taking place to either announce celiac or gluten-free or put it in their newsletter.  Of course you don’t need to use all of these methods, but the important thing is to get the “celiac” or gluten-free word out.

Use technology to find others.  This is a great option if you live in a bigger place or are shy and have a hard time with the personal favor-asking of the person-to-person method.  Use the celiac listserv, create a group at www.meetup.com (I did this.  It costs $12 a month to start a group, but it was a fast and easy way to reach a lot of people, and I could work on it at crazy hours.)  Try Craig’s List.  E-mail your friends and ask them to forward it to people they know who may be interested.  Post it on Facebook.  Maybe your town has an electronic bulletin board for activities.  Encourage RSVPs so that you have an idea of how many people to expect and then plan your gathering accordingly.  [For my first GFDC Meetup, I was really nervous that the group would be stiff and awkward. I discovered that celiac and gluten-free living is a GREAT icebreaker!  You start out already having something in common with the other guests, and the conversation flows from there.  This was awesome!]

Follow through.  Even if you only have one RSVP, host your event anyway.  You don’t know if someone else will show up unannounced, and you don’t want to lose the interest of the one person who did commit to attending. It can be discouraging, but it takes time to build a solid and interested group.  Be sure and engage your small group in thinking about the specifics of the NEXT gathering.  Just know that not everyone can come every time, so stay with it and don’t take low attendance personally.  Just work on your outreach strategy and know that making those one-on-one connections is so important that it’s worth putting up with a couple of small gatherings once in awhile.

Ask the other participants what they would like.  At the GFDC gatherings, I usually ask folks for ideas for where and when to meet next, and it’s great not only for generating ideas, but for keeping the conversation going.  The more people are involved in the decisions for the group, the more ownership they will feel toward it and the more likely they are to keep coming back.

Plan the next one.  Even if you set a specific time and place each month or week for your gatherings, you’ll have better success if you continue to bring the same rigor to planning each one.  And once you are rolling, you can ask other members or participants of the group to help get the word out to their networks and connections.  It builds from there.  Also consider asking someone in the group to help you with planning and logistics.  This will help you keep from burning out and let you miss a meeting from time to time without the gathering falling apart.  With GFDC we don’t have a set schedule, but I do try to schedule a gathering at least once a month, so I can flex it with my schedule and avoid conflicts with other happenings, holidays, etc.

Just as you have taken control of your health and well-being by adopting the gluten-free diet, you can take control of finding or building a support system.  It can take a bit of work, but the rewards are enormous and your universe of people who get it will widen immensely.

As you can see celiac connection and education is work.  But it’s well-worth knowing and educating what you and others go through in developing relationships with other celiacs.  Agreed?  I hope you enjoyed Claire’s blog and got some true celiac education in how to live a celiac lifestyle with support from Family, Friends, Co-Workers and others!

Research, educate, and advocate all celiac and gluten-free.

Peace be with you.