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The Gluten Free Experiment

Posted Feb 14 2014 6:00am

gluten free experiment

Gluten is found in wheat, rye, and barley. I can admit, I love the breads and pastas made from these grains so much so that I keep my own sourdough starter in the refrigerator. What is good for the goose isn’t always good for the gander (and perhaps not Mother Goose either). I know that there are many different foods that cause inflammation in myself and I’m working on an elimination diet to improve my health, but this post isn’t about me. This is about my youngest son, Simon.

Simon is a complex child who started life way too early. He was born at 24 weeks in gestation and it is nothing short of a miracle that he is here today. His premature birth resulted in many strong antibiotics to fight off infections, a host of medications, and a very long history of swallowing and eating difficulties. Eating food was such a problem, he drank from a bottle until he was 3 – and in doing so, he escaped a surgery doctors swore was necessary.

In the NICU, Simon was fed via IV and feeding tube. He was diagnosed with dysphagia, which is the inability to swallow correctly, and severe GERD. As an infant, all of his liquids had to be thickened, he slept on a wedge , and constipation was more than a small problem we faced. Thickening Simon’s liquids was initially done with Simply Thick, but he developed an allergy to that and we moved onto organic rice cereal for nearly two years. Eventually, he was able to go onto Thick It (which is still used today upon his request). Simon’s struggles with food and digesting are complex, which I have to consider as we move into this gluten free experiment.

I am sharing this blurry photo because it is the best perspective shot I have of how tiny he was at birth. Not even one week old, Simon's hand is wrapped around my finger and my thumb was below his wrist.

I am sharing this blurry photo because it is the best perspective shot I have of his size. Not even one week old, Simon’s hand is wrapped around my finger and my thumb was below his wrist. The palm of his hand fit inside my thumbnail.

Today, Simon is five-and-a-half years old.He had dark purple circles under his eyes, still battles constipation issues, has a large eczema patch on his stomach, was recently diagnosed with restless leg syndrome (October 2013), has low iron, and complains of stomach pain after eating breads and pastas. He is almost always medication-free (pain relievers as needed for joint pain from RLS and EDS, iron when I can get him to take it, and oxygen when he’s ill).

Because gluten causes inflammation in the body and could be an additional source of joint pain, we will all be stepping onto a gluten-free diet for this experiment and will evaluate how our bodies are doing individually at regular intervals, including taking photos of our faces and watching for the reduction in dark circles under the eyes.

Here is the game plan for our success:

  • Step down with substitutes! 
  • The one thing I know for sure about kids is that they do not like missing their favorite foods.
  • Recipes, recipes, recipes! I will be using some new recipes that utilize different grains for pancakes and the like.
  • Break back into dehydrating ! This process isn’t about suffering, we can eat many foods that are absolutely delicious that contain no gluten or preservatives from our own kitchen.
  • Probiotics and Supplements. We will be using probiotics to encourage healthy bacteria in our guts as well as one supplement I have spent hours researching.
  • Slip-ups and Setbacks. I know that there will be errors in the choices we make. I recently learned that malt in rice-based products contains gluten. It might not seem like much, but for a sensitive stomach that needs to heal, it can be a setback.

As I have learned in all the years of doctors and medical tests and procedures we have experienced as a family, I am the greatest asset in evaluating our health because I’m here every single day – and I don’t just look at one system, but how each system works in harmony. The decision to go through this Gluten Free experiment brings me hope for a healthier, more vibrant tomorrow!


This post contains no affiliate links. The Tucker Sling Wedge was a product I used with great passion and loved it when Simon was little. 

Wheat vector used with permission by Stuart Bainbridge via DeviantArt. You can find Mr. Bainbridge's work at Should you desire to use this same image, please abide by the wishes expressed and link tothe same Website as listed here.

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