I am not well. I am so sick. I have puked so many times in the last 12 hours that I have burst all the bloodvessels in my face. I spent most of the night in the bathroom, and am covered with a rash that is like an itchier burnier poison ivy. I am utterly miserable.
The cause of my misery? Gluten. I have celiac disease. Not the kind of gluten ‘intolerance’ that leads to a bit of bloating, real or imagined. Not that kind of gluten refuse that thinks any hint of softness or pudge will disappear if the 200 calorie of bread munched down with jam and butter is gluten free instead of glutinous. The kind that is sitting in bed trying not to try because their stomach is one sore churning knot of agony.
Last night the Boy fired up the oven for the first time since we have been here, put on his “I’m gonna feed all you fuckers” apron – a choice of kitchen wear that I wholly approve of, and set about making us a vegan, gluten free roast dinner, complete with quorn filets. It was a thing of beauty. Roast parsnips and carrots, pan fried brussell sprouts, tiny little potatoes, piles of peas and broccoli. A white sauce with onions and nutmeg. And quorn filets. The bastard fucking quorn filets that say “suitable for gluten free diets”, and have a nominal ‘free of gluten ingredients’ label, and a previously unknown reputation, to me at least, of recalls because the gluten free labelled food actually contained gluten.
We sat down together with our trays on our laps, watched the baseball and eat the most gorgeous dinner I have ever had. He didn’t ask for help, he just slaved away in the kitchen, going red in the face and boiling in the early fall bay heat, over a furnace-like double oven. It was his gift to me.
About ten minutes after eating supper, just as he was bringing in a bowl of frozen melon and frozen grapes, with some home made cinnamon cake sticks, that he had also been slaving over, I started to feel unwell. Within half an hour I was bent over the porcelain bringing up everything he had so carefully made.
The Boy started to panic. “Ma! Do you need a hospital? I will get you to a hospital!” Hot tears were flooding down his cheeks. I am all he has between a big bad world and his happiness. I am his barrier to disaster. I am the person he loves. I am everything to him. As hard as it all has been, we have done this journey together. He has been on the road before he hit puberty. He was riding with the freaks and the beats and his crazy but loving mother down those highways and byways from the age of 7. He has tried to protect me when he was not more than three feet tall and desperately trying to get in the way of his five foot ten father who was beating the shit out of me, only to be flung against a wall so hard I thought the bastard had really hurt my precious Boy, or worse.
I managed to catch my breath long enough to reassure him. No, his lovely cooking had not given me food poisoning, I was simply glutened. The Boy doesn’t curse. I was overjoyed when he wore the profane apron I purchased for him, glad he felt able to enjoy the human privilege of freewheeling expression. He never swears. He merely read the apron and smiled and thanked me. “Love it, Ma! Love it!”
“Fucking bastards! Fucking lying bastards!” His face had turned red and panicked. In between puking, I put my arm around him and reassured him. I was going to be ok. It really was not as bad as it looked. I looked in the mirror. My face was covered in pin prick red dots. The puking had burst all the bloodvessels in my face. It looked pretty bad. It still does this morning. I’m embarrassed to heck.
I feel a little better today. Still very weak, a bit nauseous, my stomach is a disaster. I am in a lot of pain with the rash. The celiac rash shows up in blisters and red lesions which weep and suppurate and itch worse than the time I fell in poison ivy in Minnesota. The only thing that helps is ice cold running water. I stood under a shower freezing to death, desperately glad that it was chilling that burning itch. If you scratch it, it makes it worse, it turns into thick red welts that itch even more. Sometimes rubbing the rash with dead sea salt takes away some of the burn. I have no dead sea salt. The pain and the stinging and the burning and the itching is worse than the stomach pain and the puking and the diarreah that never stops, until my body has satisfied itself that all the offending gluten has gone away.
Back in Minnesota, I was shopping in an Aldi, when two delightfully plump and luxuriously padded women walked up to the gluten free section I was shopping in. “Oh Mavis! Look! Gluten free pasta! I need some of this calorie free pasta! Cookies! Cakes!” I smiled over at them. “It has calories, just not gluten”….they looked at me perplexed, their broad friendly faces peering at me in quizzical disbelief. “Do you eat this stuff?” Mildred asked, pointedly. “Because you are pretty skinny…” She had me there. I didn’t want to get into the fact that I barely ate anything, and besides…science. Who cares about science when there are calorie free cakes right there on the shelf! She had a point. She got me, and I told her so, as the sweet pair of friend piled up their cart with gluten free goodies. What did it matter? What had it got to do with me?
Well you see, the thing is when companies see their goods are purchased by the likes of the fad dieters, and the sometimes gluten free, then they do not take the needs of the medically dependent on a gluten free diet into account. When someone tells me to pick the croutons off a salad, and I try to explain about cross contamination, all they see is Mildred and Mavis and their fad diet, and don’t take the after effects of celiac disease seriously. Celiac disease can lead to cancers, to lymphomas, to very serious consequences. The rash can get horrendously bad, and even has led to deaths in the fight to treat people in excruitating pain, with drugs that have serious side effects. I am desperate for this disease not to progress.
Tom Waits clearly doesn’t realize he is mocking people suffering from a very painful and potentially deadly disease. I wonder how he would feel visiting a celiac with a celiac-triggered cancer or the loved ones of someone who died from celiac disease? Or someone with celiac ataxia who cannot play the guitar any longer? He never struck me as an ignorant man, but ever since I saw his free the glutens diatribe, mocking that which causes me so much pain, and has led me to go hungry because gluten free food can be so expensive when you are on the road. A celiac can’t just go into McDonalds and order a 99c burger. Even the fries are not safe. My easily obtained options were expensive and driving through small towns in the middle of nowhere, my only options would be hoping that somewhere in the town had an apple. Waits once sang “champagne for my real friends, pain for my sham friends’. I am no friend at all, so Tom, why do you wish me pain?
I haven’t survived so much, to be taken out by a not-so-gluten-free quorn filet, or to have an autoimmune disease to drag me out of a life I fought so hard to secure. I would rather not eat than eat anything that makes me so unwell. I can’t get sick – I have one person in this world that is relying on me totally.
As a small aside, in the entire time I was in the shelter, I was not provided a safely gluten free meal. Not once. When I tried to explain about gluten free surfaces and pots and pans, I was sneered at and dismissed. For me gluten free is not a fad or a whim, it is life or death.
…and right now I am so unwell I am scared of this horrible autoimmune genetic disease, which causes me so much pain when my best efforts to control it by the only means available – diet – falls foul of companies that don’t take their duty to make sure the products are as gluten free as they should be.