I have celiac disease and to be honest, most people have no idea what that is other than you shouldn’t eat gluten. That’s definitely part of it but not even close to all of it. There are so many variants of gluten issues so that adds to the confusion. Sometimes people think my stomach gets a wee bit upset or maybe poop one or two more times in a day if I have gluten. I am going to explain to you here in scientific and word picture terms what actually happens, so that in future I can direct people to this space when they think I am being rude by asking how they cooked something.
Let me stipulate that I can die from eating gluten. If I eat enough gluten I can die immediately though it doesn’t happen often (thank goodness), but every gluten particle ingested kills me a slow death. For years I was malnourished event though I ate healthy foods. I have a higher risk of certain cancers and my immune system is compromised. This is very serious in the immediate and long term.
I also need to EMPHASIZE that you can’t be a little celiac or a lot. It is a disease – you have it or you don’t. The symptoms effect people differently so that’s where the confusion on that issue comes in. If you have celiac disease, every time your body ingests gluten you do internal damage whether you know it on the outside or not.
I am going to describe the typical attack for me. This happens if I know I have eaten gluten or not (usually I had no idea because I would never eat gluten on purpose). This disproves the theory that it is all made up in my head though I greatly appreciate that suggestion *SEVERELY ROLLS EYES*.
I will start to feel off and gradually I recognize that I am going to throw up. I try and deny it for as long as possible because I will have had no idea that I ate gluten and thus will be getting ill. Eventually it’s obvious (and I can usually tell by my hands because they will be clenched) I am going to be sick. I have to head to the nearest bathroom (In Spain it cost me 1Euro to get sick). The first 98% of the contents of my stomach exit in two heaves. I then usually get a short break to lie on whatever bathroom floor I am in and then the second wave hits. The last 2% of the contents of my stomach take 98 heaves to exit with little time to breath in between. It is violent and unmerciful.
When the heaving subsides the pain starts immediately. The pain is excruciating. I feel like I am dying. This last time was the worst and I was screaming and writhing in agony. I lose the ability to speak because of the pain, it hurts to breath and light is debilitating. Even my husband, who has been with me through most of my attacks was contemplating a hospital run. I have given birth to four full term children and I would go through labour again over the pain that wreaked havoc on my abdomen. Usually the pain is fairly constant but this time it came in vicious waves for several hours. when the last wave rolled away I was left with no energy and a steady pain that was sustainable. The only thing I can do at that point is to sleep. Sweet merciful sleep.
When I wake up I feel completely empty, my head hurts and I am dehydrated. I will usually end up with a rash on my body somewhere. When I was young it was always on my abdomen, then it would appear on my breasts and now it seems to favor the backs of my legs. The pain usually stays until the next day and through the next week it returns every time I eat. Psychologically it is hard to eat but add that physically your body hurts every time you do and it’s a difficult recovery process. There also isn’t a huge motivation to eat because your basically doing it just to keep your blood sugar up, as at this point your body can’t absorb any nutrients anyways.
This brings me to the scientific aspect of whats happening to my body on the inside. When you eat, food goes to your stomach where digestive juices work to break it all down. It then goes to your intestines which have villi. Villi are wavy finger like things. They remind me of a sea anemone so if you have ever watched Finding Nemo then picture the place where Nemo lived with his dad.
Those villi are incredibly important to your body because they take all the nutrients, vitamins and minerals that your body needs to survive and sucks them out of your food and gives them to your body. When I eat gluten, it’s like a forest fire rips through the vast expanse of my intestines and burns everything to the ground. Another word picture would be that the villi are like grass in my body and a lawn mower comes and mows them down. For years my body was suffering because I had no villi from eating gluten. My body thinks gluten is the devil and goes to war when it enters my body and ends up killing itself – the very thing it is trying to protect. I knew that I had been anemic (iron deficiency) since I was young and then diagnosed with zinc deficiency but it wasn’t until my early thirties that they figured out that celiac disease was the cause.
I can never eat gluten again in my life without it having this effect. There is no cure. There is also no way to know how the damage already done will impact the longevity of my life. In these regards I look to Jesus who has a full buffet of Tim Hortons honey crullers, tempura, beef wellington, scotch eggs (I have no idea if I would even like these but I have never had the ability to try one), and much more glutenous delights waiting for me. I also know that He is sovereign and He will not allow me to leave his earth one minute before His appointed time, celiac disease or not.
So until then I have to be incredibly careful and may even seem overly picky or a jerk to some very hospitable people when I refuse to eat their food. Social gatherings can be anxiety causing (I never had anxiety before I was diagnosed with celiac). The word “potluck” to me means Russian roulette and I can’t take that chance. Eating and socialization are so interconnected. I find that I am not as social as I used to be so this disease has had physical but also mental effects on my body. It’s a strange place to be terrified to eat. There are so many who have been so gracious to try and understand and listen when I explain how to cook for me or accept that sometimes I just want to bring my own food. I am grateful to them and after too many bad attacks, which seem to be getting worse, I have to make decisions to be safe. I hope you don’t take it personal, but if you do I will invite you over for my next attack and maybe when you see it first hand you will then understand why I will choose to possibly offend you rather than endure another war inside my own body.