Dietary Sadness

Due to autoimmune issues our family is gluten-free, corn-free, xanthan gum free, and as of this week, dairy free. It sucks. A lot. Don’t get me wrong, most days are good, but some days I just wish I could walk in somewhere, grab something off the shelf and feed my children.
Some days I just wish nothing mattered. But it does matter.
Tonight we were at a party. I made a cake to bring with us, at the hostesses request.
After serving it, two of the guests that know us spent plenty of time (while standing beside me) complaining about how bad the cake was and how gross gluten-free stuff is.
I am so heart broken tonight. I wish I could give my children the same things as everyone else, but I can’t. I wish I didn’t need to think so seriously about everything my children touch, but if I don’t they become seriously sick.
I wish my children didn’t need to worry. But at 2 Brom knows to ask if something is corn-free because he knows how sick he’ll be. At 9 Ella chooses not to eat cake because it contains dairy and I wasn’t able to figure out a new recipe since going dairy free two days ago.
The two people complaining have known us a long time, and know our family and our dietary issues. They also know I’m the one who made the cake. Yet they still decided to stand beside me and complain about how gross it is.IMG_0141
I am so sad and hurt. We left the party early because I just couldn’t stand to be around them for another second. I know it’s about them, not me, but it still hurts.
I spent so much time making cake after cake after cake trying to find a recipe that others would be okay with. I feel like such an idiot for putting time and effort into something only to have so many people turn up their nose at it.
Do they really think I’d choose to make our life that difficult just for fun? Do they really think having to read and re-read every single ingredient is my idea of fun? Do they seriously think I do this just to make their life difficult?
If Ella eats gluten, she has roughly 2 hours until everything inside her leaves. If she eats dairy, she has roughly 12 hours until her skin hardness and cracks, her hands, arms, face begin to look like reptile skin. She hurts.
If Agatha eats gluten, everything inside her leaves her body forcibly. For several hours in a row. If she even looks at dairy, she gets ridiculous gas that embarrass her. She’s 7. She’s embarrassed about how her body works if she eats certain foods. She avoids those foods.
If Cordelia or Brom eat gluten, corn, xanthan gum. We might as well just throw out their clothes and keep them in the bathroom for the next three days
This isn’t something I do for fun. This is something I do so my children can run and play. This isn’t something I do for fun. This is something I do so my children can be confident in their lives. This isn’t something I do for fun. This is something I do so my children don’t die.
But some people still ask us every time they see us if we’re still trying gluten free. Like it’s ever been an option to be anything but.
We have celiac’s disease. Eating gluten will kill us. Maybe not quickly, but it will destroy our bodies. We can’t eat gluten. Ever.
This isn’t something I do of fun. MY idea of fun is pretty much the opposite of worrying about every single thing my children eat or touch.
This week, in the past 2 days, we’ve become dairy free as well as the gluten, corn, and xanthan gum free we already were. It’s upsetting. I don’t want to be free of another food group. I don’t want to be more creative in the kitchen. I just want to feed my family. But I can’t.
And even though they know that, some people decided to talk about how gross the food is that our family needs to eat. While looking at me, while standing arms distance from me. There is no doubt that I’d hear.
I am heart broken because I feed my children gross food that no other sensible person would eat. I am heart broken because I am jealous of those who don’t need to worry.

9 Comments Add yours

  1. Ugh, my heart goes out to you and your family. Celiac is a monster issue to deal with. I can’t even begin to imagine how difficult it is to cope with as an adult, let alone manage the diets of your children. I hate to think of your poor kids dealing with the physical symptoms of Celiac disease all the while dealing with the stigma of being different than their peers.

    I think this trend of “going gluten free” has actually hurt people with Celiac disease because it makes people like me desensitized to those with actual issues. I have friends, acquaintances and even family who have decided to eliminate gluten from their diet for reasons other than Celiac. Which I applaud, on the surface, because they are trying to improve their health. The problem becomes they only avoid gluten in fits and starts. My mother-in-law will give me the inquisition over my soy sauce one evening, then eats a cinnamon roll for breakfast the next day.

    And that is the experience a lot of people have with the gluten free movement. I don’t think most folks even know what Celiac disease is – they just see their friends and neighbors jumping on and off the gluten free bandwagon and figure it’s a phase for everyone.

    There was a kiddo in an old playgroup we attended that had Celiac. His parents had taught him some sentences like “I have a disease that makes me very, very sick when I eat gluten. I wish I didn’t because I love brownies. But when I eat gluten, my body starts to fight itself and I could end up in the hospital.”

    I noticed that adults were a lot more sympathetic and responsive to it when it came from the kid and not the parents. And it seemed to empower the little guy instead of just sitting around while others ate the brownies.

    Keep fighting the good fight. I’ll eat your GF cake. I might not like it, but I’d eat it with you!

    Liked by 1 person

  2. tabitharose says:

    I’m sorry to hear about your struggle, it’s surprising how people with no food allergies or intolerances take it for granted as they don’t know any different. 😦

    Liked by 1 person

    1. Thank you for taking the time to comment and offer your support. It means a lot!

      Liked by 1 person

  3. Lorie Robertson says:

    Only you know what is best for your children. And what you have to do to keep them healthy is very difficult. The “so called” adults, were not only rude and disrespectful, but clearly ignorant! As you said, it’s not about you! Keep doing what you’re doing.

    Liked by 2 people

    1. Thank you! It really means a lot to have so much support and positive counts, especially after yesterday’s incident.

      Like

  4. youmeanme says:

    I’m so sorry those folks were so cruel!

    Like

    1. Thank you! Last night it was really raw. Today it’s less raw. It really helped to write it out, and the support we’ve received has been amazing!

      Liked by 1 person

  5. I am sorry for your sorrow. My kids get frustrated with their allergies and they only have dairy and soy allergies. So, I can only imagine how much harder it world be to limit more foods.

    Like

    1. Thank you! Luckily our children rarely notice their diet as lacking anything. We really focus on health and how they feel. For instance we choose not to eat some things we can because we don’t feel well after eating it (mostly things high in sugar).

      Also luckily most of our friends also have dietary restrictions so our children always ask others about their diets to make sure others are safe too.

      And this situation isn’t common, but it is still so hard, especially this week when I’m so emotionally raw with removing another food.

      Liked by 1 person

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