ABOUT US

Celiac Journey was founded by Jon and Leslie Bari who are the parents of Jax and Lexi.

Our Primary Goals

  1. Increase Federal funding to find a cure and more treatment options, other than a strict Gluten Free diet for life (over the past decade, only about $3 million has been annually appropriated by the NIH to Celiac research -- only about $1 per American, per year, with Celiac and that is not nearly enough); and

  2. Require that Gluten be labeled as a top food allergen on all packaged foods in the U.S., just like it is 62 countries worldwide including across Europe and in Canada.

Our Why

Up until August 2018 when Jax was diagnosed with Celiac Disease, we took our food freedom for granted. We enjoyed our food privilege of being able to eat whatever and wherever we wanted. Now, as parents of a child with Celiac Disease, our family has embraced its new normal. We are working to foster greater understanding of, accommodation for, and inclusion of those who suffer from Celiac Disease in life's daily activities that involve food.
 

Additionally, we are working to drive change in the research ecosystem so that hopefully in the short run, treatment options and a cure can be found, and we can return to our pre-Celiac life.

It is important to us because some day we want to be able to:

  • enjoy a worry-free meal with our family,

  • have our family be able to break bread together at home or at any restaurant we choose,

  • have our son eat whatever foods he wants (including pizza and cake at friends’ birthday parties),

  • have our son enjoy the spontaneity of any food throughout day to day life and at special occasions,

  • have our son always feel socially included at meal time with his friends and family by not having to eat special foods,

  • have our son never experience food insecurity,

  • have our son be able to purchase lunch at his school’s cafeteria with comparable Gluten Free menu options to the Gluten filled menu,

  • have us never have to worry about cross contact, have us never have to plan to bring along “safe food” (parallel pantry) for him,

  • have us never worry about carefully scrutinizing all food labels,

  • have him be able to enjoy a full array of tasteful foods, etc. 

We want to attain these goals so that our son can grow and develop fully, normally and in a healthy manner, physically and emotionally.

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Until such time as other treatments and a cure are found, we hope others will check their food privilege and understand that reasonable, common sense and low impact accommodations foster a sense of diversity and inclusion to help those with Celiac Disease and food allergies and intolerances, especially children, safely and successfully navigate a Gluten filled world.
 

To that end, in terms of the navigating a medically required Gluten Free diet in a Gluten-filled world, Leslie has also created an Instagram account at @Glutenfreefinds_pa