Recent social media posts on supporting people with autoimmune illnesses/diseases, posts on a GF DF support group I joined, and the last week of battling the after effects of pissing my stomach off (still yet to figure out the culprit) have prompted me to write this.
The thing about something like Celiac Disease, or gluten intolerance, allergies, and autoimmune illnesses, is that they are largely "invisible". People who live with them, don't (always) present with limps, and wheelchair need, or sores and boils and lesions, or anything that you generally can see and point at. I've found that except for religious things, humans tend to need "proof", they need something they can see, and if you don't look "sick", they don't believe that you are sick. So I thought I would share the things I go through, so maybe you understand better.
I remember sitting in a car with a friend when my symptoms started manifesting at a rapid pace, and I was musing on whether this was a thing that I've had all my life but was just dormant, or not as noticeable, or if it just happened out of the blue. Their medical (they aren't medical) diagnosis was that it had be out of the blue because I used to eat bread just fine before. Well actually.... The thing is, unless you know someone's medical history, don't make assumptions. Thank you.
When I was little, after school, on the drive home, my mother would sometimes stop for groceries, or just to get us ice cream. I've never been a huge fan of ice ream. It's not something I could ever pinpoint, and say "I don't like that or that" because the taste is pleasing, I can't bite into it... sensitive teeth (if you bite ice cream, as far as I'm concerned, you're a serial killer.. I'm sure there's some kind of study and BAU data that proves this, don't debate me, ask Dr Reid), but I've never been a fan. I would eat it, but could never finish more than maybe one scoop at the most, without feeling ill. I've come to understand that my body reads lactose as gluten. So while in small doses I can handle it (and that's rapidly changing too) very creamy, milky, rich dairy products, have never sat well on my tummy.
Before I knew what my particular issue was, I was (still am) a lover of good cheesy things, from crappy processed snacks to home cooked things like macaroni pie (baked Mac n Cheese to the Yanks). One day I was at a friend's office, and we had gotten food somewhere and gone back to the office to eat, I ate my portion of the macaroni and theirs. Let's just say thank you that the office had a bathroom, also, my apologies to the staff. I basically double glutened myself without knowing. It wasn't pretty.
See, the thing is, everyone has different symptoms, well, no that's not right. There is a list of symptoms that we all share, but just in different clusters. So I might throw up, get headaches and joint pain, while someone else might have rashes, diarrhoea and a brain fog, and someone else could have a combination of all those things. I think that back in the day, people didn't necessarily link certain symptoms to gluten intolerance, so many people have gone undiagnosed, or misdiagnosed. Again, I'm not a medical professional, I can only speak on my own experience. I've had arthritis since I was about 8. I was misdiagnosed with rheumatic fever after several bouts of blood testing and poking and prodding. Arthritis/joint inflammation, one of the things that many people whose bodies don't handle gluten well, have experienced.
I've had issues with my balance from childhood as well. Today, while I'm fine on my own feet, I can roller-skate , can't ride a bike, I literally have no balance and will topple over (I've heard acupuncture might help). I'm not scared of heights.. if I'm up there, however, if I'm too high up, my body tends to go into some kind of hyper panic mode, and I will probably get dizzy and can feel my stomach drop a few storeys. If i'm looking at someone's on top of a skyscraper selfie, I get dizzy. If I'm in a vehicle, I can't always gauge the distance between spaces. I get mixed up.
Once I went to see a friend, and she was amused at how long it took me to reverse, she thought I was scared, thing is, I couldn't really tell how far away from the gutter I was. I can't play RPG where the character can turn 360 degrees, it throws my balance off. I can watch them being played just fine though.
From time to time get seborrheic dermatitis, it only happens along my hairline, eyebrows, around the creases of my nose an mouth and my ears. It basically looks like I have dandruff on my face. I also randomly discover dry patches of skin on my legs sometimes.
I've never had an alcohol hangover. But from what others have described, a gluten hangover is pretty much the same thing (for me). I get dry mouth, I'm sluggish, I literally feel like I'm wading through sludge, I can't move fast enough to do anything, my head pounds, I'm foggy, I have no appetite(and not eating brings gas, gas that stays in your system, bloating but going nowhere, just causing pain), I'm dehydrated.
When it comes to reaction times, everyone is different. I truly believe this is something I've had all my life, just that my reaction time was so far removed from contact/ingestion that I didn't know. I realised it when my reaction time was about a week, it then moved to days, then hours, now, it's immediate. Depending on how gluten enters my system and how it happens (I'll get to this in a minute), I know to stop eating or drinking whatever it is.
How it happens: If I'm being masochistic I'll knowingly eat something that I really want, I just need to be sitting on the bathroom floor, because more likely than not, it will be coming right back up, and I need quick access to the toilet.
If I've started eating something (now reaction here largely depends on dosage) it won't take long for my stomach to say nope, and I can stop eating, feel a bit queasy, be ok, but try to get to the bathroom just in case.
If whatever I've eaten has been cross contaminated, as in, cooked in a pot, oil, kitchen, utensils, that have come into contact with gluten, I will be ok... just end up with hives that looks like angry eczema, which might last for two weeks (last time it was two weeks).
I recently walked into a bakery with my mother, and within seconds I started scratching. Just particles of wheat in the air will set me off. I've been in a vehicle with the ac on, and my aunt eating a current roll set me off (there's a reason peanuts aren't allowed on planes don't be pissy about it). I should however mention, that on top of gluten (wheat, rye, barley etc) issues, I have a wheat allergy. I can't use products with wheatgerm oil, hell, just touching bread starts me feeling itchy.
Please understand, that people with autoimmune issues, can randomly pick up other things, like some sort of allergy magnet. The wheat thing came along maybe 5 years ago, peanuts joined in about 3 years ago. Oh joy.
To friends of, and people in general: someone dealing with food drama might come to your house with their own food, and utensils, they might agree to meet you at a restaurant, but eat before they join you. There are reasons for this. I have reasons.
1. I don't want to be sick, and all the trouble you have to go through to feed me, might not ensure that I don't.
2. I don't want you going through extraordinary lengths to feed me, or feeling guilty when I'm sick regardless
3. I don't know how the restaurant operates and I'm not trying to be sick, It's safer for me to have eaten something before, in case I can't eat anything there
4. I wanted to spend time with you, and I've been dealing with this long enough to know what I'm doing, I'm ok, just eat your food and enjoy my company, I'm great.
There's more to say, but this is already lengthy enough, so just one more thing
Don't be an asshole.
If someone you know has stopped eating, wheat, meat, whatever, for medical issues or just because they want to, don't be an asshole to them. It's juvenile to dangle food in front of a person "you miss this don't you"- we don't, usually don't, and if we do, what's your point?
BY NO MEANS put something into food, that someone has told you they do not eat. I know people like to "trick" people into eating things then say something like "there was xyz in that, tasted good right, bet you didn't notice". Apart from the fact that you could severely hurt someone, it's just an asshole thing to do. Don't be an asshole.