Pitfalls of a Pediatric Patient Diagnosed with Celiac Disease

May is Celiac Awareness Month. For my part, I'm GIVING AWAY electronic copies of my new cookbooklet, So What CAN You Eat? Gluten-Free Paleo Vegan (mostly) Recipes for Health and Weight Loss. (It'll be for sale at the Amazon Kindle Store later today.) It has 19 fast, easy, nutritious, gluten-free recipes plus tips and strategies to support healthy living.To receive a copy, sign up for my mailing list at the home page of the website and you'll receive an email with the link for the download. In addition, I will be doing a guest "blog" later in the month at http://iamjtheblog.wordpress.com/. More details to follow.

Also in honor of Celiac Awareness Month, I invited GFDougie to write my first ever guest blog post. Dougie and I met via Twitter. His celiac history is very different from mine and his story of being a non-compliant celiac kid gives me empathy for my own kids who are growing up with their own special variety of "different."

Good day to you. I’m going to take you on a personal journey of the how and why a kid blatantly cheats with gluten while having been diagnosed with celiac disease.  I hope this personal journey will help you understand what you can do to help support and educate a celiac kid live gluten-free; and likewise, a celiac kid to gain the mental tools of fortitude and strength to obtain the courage to lead a gluten-free lifestyle.

 At the time of this writing, I’m in my 40’s. Where has the time gone?  It seems just yesterday I was a kid in Elementary and Middle School! A kid that was diagnosed with celiac disease at just under the age of six – quite a remarkable short time-frame for United States’ celiac disease diagnosis  average! 
 
It is yesterday and I remember the slamming of the locker doors, the blackboard and the chalk, and the lunch room smells.  Oh the lunch room smells – a mixture of putrid yet palatable flavors hanging in the air.  Being a celiac kid, I of course brought my lunch from home. The usual fare is peanut butter and crackers, an apple, and Kool-Aid.  Oh there were other variations of lunch from home, but this one stands out as I usually started gagging the second cracker “sandwich” down as the crackers were so dry.  I remember being tired of living as a kid with celiac, being different, and being made fun of for the strange lunches I brought to school.  How do I fit in better with the other kids? Cheat and eat wheat!  I’m no longer different as I eat “mystery meat,” cheese pizza, chicken-fried steak, yellow cake, and peanut butter cookies. Even though I ate breakfast at home, breakfast at school is better!  Honey Grahams brand cereal is a favorite of mine.  Because I’m eating like them, I’m included with the other kids now. I’m accepted.

 I remember cheating with gluten in spurts throughout my young life.  Why? One major factor was social acceptance.  Social acceptance and peer pressure among kids are a strong force to reckon with. Differences are not tolerated and are made fun of.  Conformity with other kids is the on-ramp to the highway of acceptance. Another major factor was convenience.  Convenience and gluten-free mealtime do not equate.  It’s just a fact of reality.  Special foods can’t be picked up just anywhere, enduring the pre-assembly of food combinations so dry items don’t get soggy, and eating everything homemade instead of from the vending machine like everyone else. A third major factor is the quality of the gluten-free food. To say the least – crumbly and grainy texture, bland flavor, and sub-par food product structure are nice words and phrases to describe gluten-free food at the time.  Why go through all this mental upheaval and hassle when a normal meal is waiting for me at the school lunchroom counter? 

As a celiac kid in K-12 public schools, I was not as educated as thoroughly as I should’ve been in regard to what celiac disease actually is.  As a kid, I just thought gluten got trapped in your small intestine and other nutrients didn’t get absorbed as a result of the gluten being trapped in the small intestine; yet if I ate salads and other fiber and roughage, the gluten would get “scraped off”my small intestinal walls.  While the former part of the last sentence is true, the latter is definitely not!  This thought process, however, gave me license to continue my cheating ways with gluten throughout my childhood.

A celiac kid has a lot of hurdles to overcome to successfully eat gluten-free.  Of course there are the physical environment and the education hurdles of celiac disease.  Just as a celiac adult has to watch out for gluten cross-contamination and ingredients, celiac kids also have these same hurdles.  Other hurdles are the psychological and the emotional ones for celiac kids. Taking on the grown-up responsibility of managing a gluten-free diet as a celiac kid is a very tall order.  A very strong sense of discipline, high self-esteem, and education of what celiac disease is needs to be instilled in the psychological and emotional make up of a celiac kid.  In my opinion, I don’t believe I received these mental tools early enough in my childhood. That said it’s never too late to learn these tools and apply them in relation to a gluten-free diet no matter what the age of the celiac person.

As a postscript, I would like to state for the record I do not advocate cheating on a gluten-free diet if you have been diagnosed with celiac disease at any age. In my experience, I was lucky (or unlucky) not to have experienced some of the debilitating symptoms one can have in regard to celiac disease.  Sure, I had constipation, diarrhea, and other symptoms, but at that time in my life those celiac disease symptoms didn’t seem serious enough to permanently stop me from ingesting gluten. My most apparent symptom in regard to celiac disease at that time was Dermatitis Herpetiformis (DH).  Even that celiac disease symptom wasn’t enough of a deterrent for me to stop ingesting gluten at the time.  That said today I’m a healthy, gluten-free celiac disease survivor.  I’m thankful for each day I survive gluten-free. My mantra – Gluten-free one day at a time!  I'm learning.

 Research, educate, and advocate all celiac and gluten-free – and Celiac Disease Awareness for May.

Peace be with you.

About GFDougie 

Diagnosed with celiac under the age of six years old, Dougie has had a lifetime of learning to live gluten-free. He spent many years on the fringes of gluten-free compliance. Now in his 40’s, Dougie has learned a lot in regard to symptoms, hidden ingredients, and what “not to do” in regard to living with celiac and being gluten-free. He is a regular as GFDougie in the gluten-free Twitter-verse, offering tips, advice, support and encouragement. His blog, Gluten Free Tip also offers successful hints, recipes, and products in regard to celiac disease. Read is full bio here.

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