I met up with a friend from the gym the other day and it reminded me of all the things I used to take for granted. Like life without a food allergy.
When I lost over 100 lbs. and swore off diet soda and fast food, I had a choice in the matter. I took those choices for granted. When I was single with no kids and I had mountains of extra time on my hands that I would fill up with watching television or reading my favorite novels, I took all that extra time for granted. When I had my first two children, and they could eat ANYTHING they wanted because they didn’t have a food allergy, I took that freedom to eat and be normal for granted.
When I had my third son and he began reacting to my breast milk at 6 months by developing rashes that would itch and bleed, I stopped taking food choices for granted.
This little man itched and bled for about a year. His entire body was covered in rashes. The doctors were puzzled. I went on an allergy-friendly diet cutting out all soy, dairy, seafood, shellfish, wheat, peanuts, tree nuts, sesame, etc. And although the rashes got a little bit better, they never went away. He was finally diagnosed with severe eczema and food allergies–something I wouldn’t wish on my worst enemy.
Having a child with food allergies and severe eczema is a similar stress as having a child Autism. I have experience with both. They are equally emotionally exhausting in different ways. And they require a very unique set of skills to deal with. I was more equipped to handle the child with Autism than I was the child with food allergies. To the person who has never had a child with allergies, that might sound like an odd statement, but the stress of food being the enemy and fear of leaving the house was very difficult for me to handle as a parent. Yes, even more than managing the outbursts and treatments of a child with Autism.
And what happened after that was a nightmare. I basically didn’t leave the house for over a year. His skin would react to everything it seemed and we had trouble controlling his eczema outbreaks. His skin was constantly red, swollen, bleeding or seeping. He was basically like a burn victim that never got any relief. I wish I could say there was a miracle salve that I found, but I didn’t. We went through three different allergists, including specialists at Children’s Hospital Los Angeles and exploratory surgery in his gut and after all that found out he was actually allergic to about 22-24 different foods. He was also reactive to things like latex and polyester, so he was also limited in things he could wear. We were only able to put him in hemp, bamboo & cotton. He was in zipper sleepers all day to prevent itching and breaking of the skin. And I learned sometimes people can be really cruel about baby fashion. As for the medical side of things, the doctors would say he reacts to all these things and then say on the other hand that reacting to all these things was impossible… yet it was happening. And some of these doctors turned the tables on me and would interview me like I was purposely harming my child…the very people who I was leaning on to help me. The list of “no-nos” was overwhelming and I would spend my days crying when the older kids were in school at the utter shock of it all. I was definitely dealing with depression and hopelessness.
We finally got some relief from the eczema with NAET therapy, which I refer to as “voodoo magic” because it seems kinda crazy but we saw a difference in his skin the day after each treatment. He also went on a special diet tailored for him by a Naturopathic doctor. And then when he was ready for “mommy-and-me” preschool, he was significantly better. His allergies had significantly lessened to only wheat, dairy, peanuts & tree nuts. That may sound like an impossible feat to some, but to me that was very manageable. That meant my child could have fruits like bananas, kiwis, oranges, cherries & pineapples again. He got soy & eggs back. Going to a restaurant was possible. Being somewhat normal was possible.
Then came the time for me to worry about what he was going to eat in preschool. And again this may not seem like a big deal to some, but to me it was the straw that broke the camel’s back. I just couldn’t deal with the thought of having to bake hundreds of cupcakes and freeze them just so he could have his own treat during a party at school. This was overwhelming to me. It wasn’t just about the food or the allergy. It was a visual representation of his entire life and how he was going to be different. It was a reminder to me that I had failed somehow with something that I had done during pregnancy…even though this was a completely irrational thought…it was still there. I knew so many women online who baked cupcakes for their allergy darlings and they always seemed more like Martha fucking Stewart than me. Baking was a mental block.
One day I had to run across the street from his preschool to get something from the store and found a bakery that literally saved my sanity. Karma Baker was a vegan, gluten-free bakery safe for Celiacs. And to make things even more appealing, they made all their products with NonGMO and mostly organic ingredients. I had no idea at the time, but the bakery was owned by a friend of mine. The owner and I were friends at the gym, which is the only place I felt normal, and didn’t have to worry about things like wheat & nuts. I purchased a blueberry muffin from the bakery and took it to school for him to enjoy. It was his very first muffin. You would never think something so small would have made me cry…but it did. The second he took a bite of it, I started crying. He asked me “Mommy, why are you crying?” And I told him, “because I’m so happy baby…mommy is very happy!”
How do you make an allergy mom cry? Make her feel normal.
There were other times when the moms that year would change the entire plan for treats just to accommodate my son. I never asked them to do this because the list of allergies was so overwhelming, but they did. And every time someone showed us kindness and inclusion, I would cry. Those women had no idea how incredible their actions were to me. It kept me going. It made me feel like life was worth living. For him to be able to eat with the other children, made all the difference in the world. It made us feel normal.
As for my girlfriend, Celine who owns Karma Baker, I’m so proud of her. Her products are now in grocery stores, cafes, hotels, etc. And she just started selling her baked goods online. Her challenges are different than mine but they are just as real. She needs to go that extra mile to get that exact texture and taste right so that her clientele can feel like they are eating a conventional baked good. She’s not just selling gluten-free donuts, cookies & cupcakes, she’s selling a chance for a mom like me to feel better and watch her son enjoy something other moms take for granted.
Life is funny. The more challenging my life becomes, the less I take for granted and the more blessed I feel. It sounds weird, but it’s true for me. And I don’t take this site or my role as a health educator for granted EVER. I’m blessed beyond measure to be able to serve you all.
Thanks for listening to my story.
Allie
Beautifully written, and celiac mamas everywhere know exactly what you mean!
I just want to add, in many families (including mine), these horrific rashes are triggered by vaccines.
I’m wondering if there a wheat-derived excipients used in vaccine production (excipients are not required to be listed in ingredients). When my infant had his rash reaction, I stopped eating the 8 most common allergens, for weeks, and it made no difference to his rash, which lasted for months in its worst state, and for 7 YEARS in a milder form–until we thought of taking our son off gluten.
My own celiac disease was triggered as an adult, by vaccines.
Vaccine safety testing is a joke, and neither looks for nor tracks these kinds of reactions.
Casey Bridge
I happened upon this through another post on Facebook. So glad I read it. I hear ya and identify. I have a child with severe food allergies & and s child on the spectrum. I was surprised to see you mention Karma Baker…Celine’s treats have been a life changer for our family! Plus they are yummy! I honestly just found this article and am not associated with Karma baker other then being very impressed with the treats.