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Gluten-Free Sanity: Become a Support Group

My husband and I had been in “survival mode” for about 3 months; back in October of 2000, our then-18-month-old daughter was getting strong and healthy on the gluten-free diet.  But I needed more for my sanity.  I couldn’t keep feeding my daughter only hamburger, eggs and French toast until she was 18.  I needed to find people battling the same issues as me.  I tracked down the only celiac support group in my area, but it catered to adults.  But that is where I met the women who were about to change my whole perspective on managing a gluten-free childhood.

With just three families, the women started a local support group for parents back in 1998.  “[We] knew that we could all help each other if we banded together”, co-founder Julie Jones says of those days now 10 years ago. Lynda Benkofske is the other co-founder of the Twin Cities Raising Our Celiac Kids chapter in Minnesota.  “I wanted to network with other families that were dealing with ‘kid stuff’ [like preschool and fast food restaurants]“, Lynda recently told me.  My family became one of those families Lynda was talking about.  We went to our first meeting in October of 2000. It was great!  I felt so empowered; like a weight had been lifted off my shoulders.  “We could comfort parents who were frustrated that no one else understood the difficulty of what they (and their child) were going through.  I still feel that rewarding feeling every time I leave a meeting today”, Jones says.  Clearly the group struck a chord.  In ten years, the Twin Cities ROCK chapter went from 3 families to 180+ families.

The meetings also enlightened me about everything from gluten-free donuts to McDonalds French Fries; food information that was priceless to me and helped me persevere through the tough times.  A 2007 study supports what I and many others have felt.  Research at Beth Israel Deaconess Medical Center in Boston, Massachusetts found:
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“…support groups may be a productive way to improve…adherence to gluten-free diets.”   The findings were no surprise to Jones, who said the study “…matches what we have seen at meetings over the years.”

The research looked at what issues might affect a celiac’s adherence to the gluten-free diet including anxiety, depression, difficulty in finding gluten-free foods, and the avoidance of gluten to avoid symptoms.  The findings showed the cost of gluten-free food and “…changes in mood and stress levels affected the ability to…follow the gluten-free diet.”  It said the solution was to provide patients with education and support group connections; patients who followed through were more likely to stick with the diet.

Shelley Gannon, wife of retired NFL quarterback Rich Gannon told me she agrees. “The information [members of the parents’ support group] shared was invaluable”.  She believes “…everyone should be a part of a group in some way.  There is no way one person could learn all the information [by] themselves.”  The Gannon family was a very early supporter of this group and groups like it after their daughter Danielle was diagnosed at a young age.

So what can you do right now if you are struggling to find a support group?
  • Find an online support group to get you started.  You can find one almost instantly using any search engine.  In an online support group, you will always find someone available to help you with questions until you find a traditional support group. 
  • Get into a traditional support group. If you attend a support group in person, you will likely find it to be a more personal and rewarding experience.  Building a personal network can strengthen your confidence in conquering this diet.
  • Be an Innovator!  If you still can’t find a group that is a good fit, Benkofske recommends starting your own, “…if you have the passion to help others while at the same time helping your own family, go for it!” 
So here’s to you being savvy, getting inspired and saving your sanity!  Become a gluten-free groupie!

As always, Celiac.com welcomes your comments (see below).


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We have gone gluten free, our whole house, as of a month ago. It was pretty seamless since I had been gluten-free for 5 months last year. I have found many good recipes, and my picky husband and one of my boys who is also a picky eater, even prefer many gluten-free recipes to the regular ones. My husband did see my point about the size of the gluten protein means nothing. Its a gluten protein period, that's what you are avoiding. It doesn't matter if its hiding in the scratch of your baking sheet and you can't see it. You can't see the wind, but it's still there. I hear you on the anemia. I've been anemic for several years, I just thought it as because I was getting a little older. Has your anemia gone away or do you still have problems with it?

Ennis, it is made out of metal, coated with plastic I think. You have such a hard time, my heart really hurts for you. But you are such a support to those on this board, and a great teacher for those of us who are new.

Thanks everyone! I think its hard for people to fully accept because they cant see the damage it does every time you get glutened. It's invisible. Im glad to know I wasnt being paranoid. I sure was when I was first diagnosed. I laugh at myself now, but its a pretty steep learning curve.

FYI......anxiety is a common symptom with celiac disease and NCGI. It seems to resolve on a gluten-free diet. ?

Yes, I will definitely update you and would love to hear what your experience is. I'm glad I found this forum because you're right--it's nice to not feel so alone. I'm also prone to anxiety--so waiting and worrying is not fun! Cyclinglady, thanks for sharing your experience as well. I do plan to maintain a gluten-free diet for a while at least if the biopsy is negative just to see how I feel.