Making Do Recipes: FPIES, MCAS, EoE, Allergy Recipe Finder

Tell us a little about your background and your aim to provide allergy friendly recipes:

Our son, Elisha, started his life in the NICU due to breathing difficulties and low oxygen, and he continued to have multi-systemic symptoms throughout his infancy.  He had stridor; frequent, severe hiccups; foul smelling, discolored EBF poop with mucous and blood; occasional projectile vomiting; blistering diaper rashes upon contact with his own urine and poop; and terrible colic almost all hours of the day and night.  He did not sleep longer than a 30-40 min stretch in his bassinet during the first four months of life.  After being released from the NICU, however, many of his symptoms were brushed off due to adequate growth.  It wasn’t until he was four months old that we toyed with the possibility of dealing with food allergies.  At that point, I (Kasey) began a food journal and an elimination diet.  It took a few months, but we figured out that I needed to eat a diet free from gluten, dairy (both cow and goat), soy, chicken eggs, beef, yellow and green peas, peanuts, oats, corn, sunflower (and related herbs/spices), eggplant, chocolate, certain types of seaweed, and any derivative of any of these allergens.  This was hard enough to manage, but it wasn’t until after introducing solids that the idea for Making Do recipes came about.

What inspired your website?

After starting solids and figuring out a few of his allergens the hard way (vomiting to the point of shock and unconsciousness), Eli got an official diagnosis of FPIES and “other non-IgE mediated food allergies,” we were advised to trial new foods slowly.  For our son, each new food trial required a weeklong process before that food could be considered “safe.”  If he had a reaction, we decided it was best for him to pause food trials for a few weeks.*  It was impossible to find recipes that even remotely fit his short, slowly-growing list of safe foods.  I couldn’t find any sort of recipe search tool that catered to the level of specificity that we needed.  The best bet for finding any ideas was an FPIES Support Group on Facebook, but I wanted something more efficient.  That’s where the idea for Making Do Recipes came from.  My husband, James, is a software developer, so I brought up the idea, and we worked have together to create this resource!

Can you tell me a little more about what you provide on your website?

Making Do Recipes serves as a database and search tool for sharing and finding recipes that fit your family’s current dietary allowances.  There are two ways to search for recipes, depending upon where you are in your food allergy journey.  1.) You can search for recipes based on what allergens you must avoid.  The thing that makes this stand out from similar tools is the ability to filter out any food item, since not everybody has food allergies or sensitivities that fit into the “top 8” or “top 14” category.  2.) If you are expanding your diet slowly from a TED, you can search for recipes that *only* contain a certain list of safe foods.  Additionally, with either search method, you have the option to change the “flexibility” of the results.  For example, if you change the flexibility to “1,” you will find recipes that have all allowable ingredients and up to one disallowed ingredient.  This feature is useful if you are comfortable toying around with one or two substitutions in a recipe.  It can also help families early on in their food introduction journey decide what might be beneficial to trial next.  Finally, you can add key terms to your search, such as “breakfast” or “baked good” if you are looking for a particular type of recipe.

What is your motivation to be so allergy friendly?

Raising a family comes with enough challenges under normal circumstances.  The social, emotional, and mental burden of dietary restrictions and the fear of allergic reactions can easily take a toll on parents who are navigating these additional challenges.  Helping families find recipes and make do with the foods they can eat safely will hopefully help to shoulder just a small fraction of that burden.

Do you recommend this for both new food allergy parents and ‘veteran’ food allergy parents?

I would definitely say that this tool is primarily for families just starting out with dietary restrictions.  That being said, it could also be useful for veteran allergy families who are feeling like their diet is in a rut and looking for more variety.

As the creator, do you have recommendations/advice for utilizing the website?

Play around with the tool for a little bit to get comfortable with using the different features.  There are tips and tricks listed on the webpage.  Also, feel free to reach out with questions or feedback at admin@makingdorecipes.com

Anything else you would like to share that we did not ask?

Right now, the recipe selection is quite limited.  There are currently 74 recipes, most of which have been added by me.  In order for the tool to be useful to a wide variety of people with differing food allergies, the recipe selection must become more diverse.  That’s where the FPIES (and wider allergy community) come in!  It is encouraged for anyone to submit recipes directly to be the website database!  It doesn’t matter how many or how few allergens your recipe includes – you never know who may benefit from your contribution.

The link to the website is https://makingdorecipes.com  which will take you directly to the recipe finder.   Use the “search” button to find new recipes or the “+” button to share your own recipes. 

This article is an interview with Joy Meyer, Co-Founder/Co-Director of The FPIES Foundation and Kasey and James Grams.  James and Kasey Grams are a young couple living in North Carolina with their young son, Elisha. Kasey has Celiac disease and EIA to wheat, which require a strict avoidance of gluten-containing foods, so reading allergen menus and checking ingredient lists were already a regular part their life together when they got married.  You can read more about, and connect with, James and Kasey on their website: https://makingdorecipes.com/

*At the FPIES Foundation we understand that food trials can be a unique process for each individual and our organization does not specify a particular process to be best or universal for all individuals affected by FPIES. We strongly encourage all individuals and their families to develop their personal plan for food trials in coordination with a medical professional familiar with the affected individual’s unique FPIES reaction history and experiences.