As many of you know, Miss P was diagnosed with celiac disease a few weeks ago and I wanted to share some updates. I’ve chosen to share this on our farm page as well because we have many customers who struggle with food allergies, or know someone who is suffering, and it’s good to feel less alone in all of this.
This has been MUCH harder and more eye opening than I had ever thought, and the real reason I am sharing all of this is to help educate everyone. I have actually joined support groups on FB, gone through the stages of grieving, cried a lot, and am reaching out to others who have gone through this chaos.
I had no idea how awful this disease was and how sensitive one can be to gluten. And I thought I was “gluten free” all this time. I’ve scoured through articles written on how to get rid of all gluten from your life, because that’s how annoying it is, it deserves articles.
If you were like me, and thought removing gluten like bread and pasta from your diet was enough to be gluten free, you were wrong.
Our new reality is, if it’s something that could potentially go in your mouth, the label needs to be meticulously read and possibly the company contacted for clarification. If it does not have the “Certified Gluten Free” label above, it’s suspect. This certification means that no part of the product contains wheat, and the lines in which it was processed on was never touched by something with wheat. Many products will say Gluten Free, but then will say that they share process lines, which also process wheat. Maddening, right?
To go even further into crazy bubble boy town, it can be, and more than likely is in your shampoo, conditioner, hand soap, lotion, envelopes, play dough, and other non food products I’m still discovering. Ceramic coated pan that made grilled cheese a few times from my sourdough bread? Bye bye! Cast iron skillets that made sourdough French toast months ago? Must be stripped and re-seasoned.
We are in the long process of removing all gluten and anything that has come in contact with gluten from our home that cannot be cleaned.
I am so thankful for all the support I’ve felt so far with all of this, but I’m realizing just how little people know about it, which made me decide I needed to make this public.
At this point, I just hope that everyone can understand that our lives are forever changed by this diagnosis. We will not be able to attend parties like normal families anymore. If we even come, we’ll be bringing along all the food and tools to serve P. Pans, cutting boards, silverware, dishes, cups, soap and sponges will be a must when we travel.
I hope that people are understanding when we decline to attend an event because it will just be too difficult right now with 3 children, or I’m exhausted from trying to make sure Penny has absolutely zero cross contamination with gluten.
I hope no one is offended when they prepare something “gluten free” for us, and I decide that it’s not safe, or that I’m paranoid that somehow, somewhere in your kitchen a secret ninja gluten particle made it’s way on to your hand that touched the spoon that went into the food.
Yes, I’m aware there are many restaurants now that have gluten free items on the menu. But, do they fry/boil/grill/chop their gluten free food in/on the same things as regular food? Unless they have everything separate, it’s probably not safe.
But Chelsie, why does that matter? Glad you asked. When you are dealing with a celiac child, who puts everything in their mouth, including their hands, cross contamination can very easily occur. For example, if my hand lotion has gluten in it, and she touches my hands, then puts her hands in her mouth, she’s been “glutened”. Another crazy example, if my makeup has gluten in it, and she kisses my face, then licks her lips, she’s been “glutened”. If a child comes to my house and has eaten something with gluten in it before arriving, didn’t wash their hands, plays with our toys and P puts said toy in her mouth, she’s been “glutened”. THIS IS NUTS!
Ok, so what’s the big deal if there’s just a little cross contamination? Again, glad you asked. Basic breakdown of what celiac disease is…it is an autoimmune disease/disorder which is triggered by the presence of any gluten in the body. This gluten MUST be ingested, so you can’t absorb it through your skin (phew). An autoimmune disease/disorder is NOT an allergy. When a person with celiac disease ingests gluten, the body attacks the villi in the small intestine, perceiving it as a threat, damaging it, and causing the body serious harm. The small intestine is where your nutrients are absorbed and you must have those villi in tact in order to do so. Every time gluten enters the body, this process happens, and it takes days, weeks, possibly months to fully recover. Over time, if you are not careful, celiac disease will kill you. It can starve you to death and increase your risk for certain cancers. The reactions you have to being “glutened” vary. Many people think it’s just terrible gut issues like diarrhea, constipation, cramps, and vomiting. It is not. Some people have NO negative reactions. Those people suffer the most damage because they never know when they are accidentally being “glutened”. As far as we can tell, P’s main reaction is through her behavior and mood. She could be feeling physical pain and just doesn’t know how to express that to us. However, brain fog, fatigue, mouth sores, joint pain, skin reactions, heart-burn, and more can be a reaction from being “glutened”.
If you’ve read this far, you are awesome!
As far as the farm goes, we are not sure if that is something that could potentially make P sick. Straw is a cutting from wheat, and although there are no gluten containing berries present, there is still the chance that in the harvesting process gluten has contaminated the straw.
I’m hoping to reach out to anyone that has celiac who has any experience with this. I know that @sustainabledish Diana Rogers has celiac disease and is also a farmer. Any insight? Any of my other farmer friends, horse lovers, or the like have any insight?
It would obviously be awful if the farm would make P sick, and a lot of our plans might have to change. But for now, we’re just trying to focus on what we know and can control, and we hope that everyone that knows and loves us supports us by being patient and understanding through this major life shift.