The majority of celiac “tweens” and teens say involvement in activities and feeling different from the other kids are their biggest challenges with the gluten-free lifestyle, according to a new unscientific survey recently conducted by thesavvyceliac.com.

I personally have noticed some recent changes in my 10-year-old daughter’s attitude about the gluten-free lifestyle. Emma was diagnosed with celiac disease at 15-months-old. She had been fine with her diet and lifestyle until late in second grade. That’s when she asked me about getting school lunches and not needing to bring a cold lunch to school every day. More recently, she has complained when ingredients change on foods and she can’t have them anymore; or someone wants to meet us at a restaurant where she can’t eat the food. We have our ways with working through both issues, but these were things she didn’t complain about when she was younger – probably because she was, well, younger!

I wondered if other parents were going through the same changes as me but I also wondered about families who have a child diagnosed in those formative “tween” or teen years. This is the first of two parts I plan to do on this subject.

A few statistics to help you better understand who answered these questions: 30% of the respondents were parents of celiac children who are currently 16 years old and older. The rest of the respondents were pretty evenly spread out around 10% for each age group: 10, 11, 12, 13, 14, and 15 year olds. A whopping 57% of these celiac children were diagnosed before the age of 10. Maybe I shouldn’t be surprised at that number, but I was. 12-year-olds and 16 years and up were the next ages with the most diagnoses with 10.1%.

Impact of Gluten-Free Diet on Kids Over 10-Years-Old

One question I asked was “What have been your child’s biggest challenges with the diet?” Respondents could answer as many options as were in front of them and they could comment on their answer as well.

Both feeling different and being involved in activities make adolescence painfully difficult for children with celiac disease. Each category received 51.9% agreement from respondents — with school lunch (45.6%) and families not “getting it” (40.5%) coming in right behind. One parent noted, “As a high schooler, he wants to be able to go out to eat with his friends. Homecoming and Prom have been the worst times for him, especially if the group wanted to go to a restaurant instead of someone’s house for a meal.”

Another parent acknowledged what many of us think every day, “School activities, field trips, camp, sleepovers, etc. all revolve around food”. A parent of an athlete with celiac disease had a different perspective, “Family members (not at home) don’t always get it, neither do coaches and schools. Also, he is a serious athlete – sometimes hard to get enough ‘power’ food in him”.  Yikes — power food any suggestions?

One parent did point out a positive note, “…now with gluten free pizza everywhere and gf products everywhere it is much, much easier to be a non-issue”.

11 % of respondents did say their child appeared to have no challenges with the diet and was glad they were feeling better. Many commented on this as well. One parent said “My child has a ‘healthy’ self image and advocates for herself.” Bravo! Another parent also said, “My daughter has no trouble with the gluten-free diet. Friends and family also make sure there is gluten-free food for her.”

So how do families handle the diagnosis and these challenging moments during those formative years? I asked those questions as well. Watch for those responses which could be helpful for all of us – coming up in a post later this week.

*note: This was an unscientific poll that 79 respondents participated in via SurveyMonkey.com from February 2nd-8th, 2009.  Some respondents may not have had a clinical diagnosis of celiac disease, but remain on the gluten-free diet out of necessity for their health.

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