How Going Gluten-Free Saved Our Family

As parents, we believe that our children are perfect.  Yes, they can be little monsters every once in a while, but it is a tough pill to swallow when we find out that our child may have some challenges that need to be addressed. 

My sweet little Ben was born after a long, arduous labor.  We had our share of breastfeeding challenges in the beginning, but after 2 weeks we had mastered our latch and I was flowing with breastmilk.  His massive amounts of spit-up were somewhat concerning to me, but he was gaining weight, so his pediatrician was not concerned.  When Ben was 6 weeks old, I went to a local breastfeeding support group to find out why he was so fussy, gassy, and constantly puking.  The lactation consultant recommended that I remove dairy from my diet, which I did haphazardly, to no avail (obviously!) 

 While my baby boy continued to gain weight, and actually grow out of his fussy-stage, he slowly began to miss his milestnes.  We thought it was because he had an enormous brain (i.e., head), or maybe was just too content to try anything new.  When Ben wasn’t crawling by 12 months, we asked for a referral for physical therapy to help him learn this new skill.  I was also 5 months pregnant with our second, and Ben was HUGE (over 25lbs) and a challenge to lug around.  Ben finally began to crawl at 15 months.  He didn’t walk until 21 months.  He didn’t talk until well over 2 years old, although he had over 50 signs, which helped us to communicate with one another (and I will be eternally grateful for.)


But, it wasn’t just the delay in developmental milestones that concerned us; it was the unique behaviors that manifested.  Temper tantrums were an understatement…I would prefer to call them massive explosions that lasted for up to an hour at a time, usually accompanied by kicking, hitting, screaming, and rolling around on the floor.  He wore his pants backwards for months because they were ‘more comfortable that way.’  Putting on socks and shoes took over 30 minutes for Ben would scream as if they were sharp knives cutting into his skin.  He refused to ride a bike or go swimming because the helmet and bathing suit ‘bothered’ him.  These behaviors were drastically affecting our lives, in a very negative way.


I was also starting to sink into a very significant depression.  I searched for every explanation for why my beautiful son was so much more challenging than my friends’ kids.  Why was my son so unhappy?  What had I done to cause this unhappiness?  Why was it that no matter what I tried, NOTHING worked???  My husband and I took a Redirecting Children’s Behavior parenting class, but our situation was so unique that the lessons were rarely applicable.  I spent hours at Target, Old Navy, Hanna Anderssen, Tea Collection, etc. looking for the most comfortable clothes I could find, yet I rarely found ones Ben would wear.  Even therapy wasn’t working for me.  I was utterly devastated.


When Ben was almost 5 years old, I took a trip to Portland for a Holistic Practices in Lactation Workshop.  By this time, Ben had not gained any weight in 2 years, nor had he really grown in height.  He had painful bowel movements every day and his sensory challenges were debilitating.  While at the workshop, we discussed food intolerances and how they could not only affect the gut, but the emotional wellbeing, as well.  I spoke with the workshop teacher in private and asked for her guidance with my son.  She immediately asked if I would consider taking him off gluten.  I was petrified.  I forgot to mention that Ben also refused to eat anything, but fruit and gluten-laden products.  What would my son eat?  Could I add one more battle to our relationship?  At this point, though, I was willing to try anything!

With my new knowledge, I made an appointment with a pediatric osteopath as soon as I returned to San Diego.  Within 30 minutes of going over my pregnancy history (during which I was severely gluten-intolerant) and Ben’s symptoms (both emotional and physical), she recommended that I take him off gluten as soon as possible.  Fortunately, she had a functional nutritionist in the office that helped us to figure out what to eat during this elimination diet. 


When we returned home from our appointment, I began to clean out our cabinets.  Anything with gluten in it was donated to other families.  I headed to Whole Foods, picked up the magazine, Living Without, and used their handy guide to help choose the foods we would be eating for the next three weeks.  In the beginning, the elimination diet was quite costly, mostly because Ben was so picky and we had to find just the right cracker, bread, pasta, etc. that he enjoyed.  Once we found which brand he preferred, the cost went down significantly.  I also purchased a really great cookbook (Whole Family Nutrition) and found a few wonderful web sites (Gluten Free GoddessFine CooksGluten Free Girl and the Chef).  I also downloaded Trader Joe’s list of Gluten Free products.


After 3 weeks of eating completely gluten-free, we started to see a remarkable difference in Ben.  Suddenly, there were fewer temper tantrums over getting dressed.  He started to wear a bike helmet and bathing suit.  He no longer cried while having a bowel movement.  His overall demeanor had completely changed.  The defining moment was on Father’s Day.  Ben had spent about an hour in the pool, in his new bathing suit, using a kickboard for the first time.  He turned to my husband, with an enormous grin, and announced, “Daddy, this is the best day I have ever had.”  I just started to cry.  It was the first time I could remember that my son had truly enjoyed an entire day. 


Over the past 18 months, we have still had our ups and downs.  Ben still battles with sensory integration disorder, although the symptoms have lessened drastically.  Buying ‘comfortable’ clothes can still be quite a challenge.  Ben continues to be a very skinny child, although he has put on about 5 lbs. and grown 5 inches since going gluten-free.  Ben remains to be a fairly picky eater, although he will now eat salmon, chili, and a plethora of gluten-free products.  I constantly worry that he is not getting all of the nutrients he needs.




What amazes me the most, though, is Ben now plays t-ball, soccer, and Jiu Jitsu, which all have an array of uniforms I never imagined he would wear.  On good days, we can have conversations that include compromising and problem-solving, without tears.  He is getting physically stronger and stronger every day.  And, Ben has now met and surpassed many of his developmental milestones and is one of the smartest kids in his 1st grade class. 



Most importantly, my relationship with Ben grows stronger everyday.  We appreciate and have found a new understanding for one another.  Every morning I can't wait to see his smiling face and every evening I feel blessed to have such a wonderful child as my son.  He has taught me more than anyone I have ever known.


Going gluten-free has completely saved our family and I will be forever grateful for the practitioners who helped us along this journey.


Now, why have I shared this deeply personal story on my blog? 

One, I hope that other parents who are dealing with similar issues in their families will be inspired to try alternative therapies/diets to heal their children. 

Two, I hope that I can help to remove the fear parents feel when it is suggested that they try an elimination diet. 

Three, I want to break the cycle of gluten-free diets being seen as a fad or a weight loss program. 

Four, I hope to set the foundation for a few future articles about Breastfeeding and Food Intolerances.