I have Celiac Disease.
I "accidentally" ingested gluten this week. I should have known better. Really. Eating something questionable is not an acceptable action. Still, that's what I did. And it was stupid. On top of all the stress and grief of this month my body had ZERO resilience to any kind of exposure.
First sign - that lovely fever blister. Immune system quickly takes that first step and then spins out of control. Dizzy. Fatigued. Nauseated. Has that foothold now. Kicks of a bout of recurring epstein barr- see those swollen glands under my chin that are vaguely froglike? Yes eppstein barr. Mono. I already had my annual round of that in May - so now I'm super irritated. Let's top that off with - now that your immune system has been completely taken down for the week what could a little conjunctivitis hurt?
If I sound bitter I'm just angry at myself. I love my life and I live it in relative freedom from illness as long as I watch what I eat. I've been introduced to so many new kinds of foods and flavors that there is really no need for me to ever go outside of that and eat something "questionable"... yet here I am.
My word count is at zero for yesterday. This photo is of me on the way to my doctors office so that they can be really vague about what I should do about anything except for the conjunctivitis which is an easy prescription of eye drops.
If you know someone with Celiac Disease please take them seriously. If you care about them don't ever suggest that they just try something. It isn't a matter of a little tummy ache or GI distress. This is a disease of the immune system. Read about it. If you don't know anyone now you will within the next 1 to 5 years. 1 in every 100 people has it and 97% of them are currently undiagnosed.
If you have CFS or IBS or have been feeling unwell for years and been accused of being a hypochondriac - the latter being my plight for fifteen years prior to diagnosis - please go to your doctor and ask them to be tested for Celiac Disease. If they seem uncomfortable with that I would urge them to explore the newest reserach on Celiac.
If you have Celiac Disease - don't take chances. Each exposure to gluten could be the one that leads to future neurological disorders or non-hodgkins lymphoma or lupus or any number of other conditions that have now been related to un-treated Celiac Disease.
Celiac Disease. Look it up. Remember it. It's huge. Then - take it seriously. One of the worst side effects to the treatment of Celiac Disease - maintaining a 100% gluten free diet - is social isolation. If you know someone with Celiac Disease the best thing that you can do is EVERYTHING THEY FEEL IS NECESSARY TO PROTECT THEIR HEALTH. Jump through the hoops. Encourage and praise them for making a giant fuss about everything that passes their lips. It's a big deal. Treat it like one. Hug them and feed them products that are marked gluten-free. Don't be upset if they don't feel comfortable eating dinner at your house.
Maybe this sounds like alot. Feel free to tell me you think so. But remember - if you care about this person at all and you don't want them to develop complications that could end up killing them in the long run - it's worth the trouble isn't it? Isn't it worth the fuss?
I'm really tired and I'm going back to bed now. I'll get my pic for today at some point and hopefully will have enough energy to work on my novel tonight. Please feel free to ask me questions. I can point in a hundred directions for answers I don't have. And hopefully I haven't pissed anyone else with Celiac off. We all have different takes and feelings on living with this disease. Too bad it took me getting sick to finally say something about it here. Or maybe it's good that I have presented the last 76 days of me living my normal life with it first. *shrugs*. Yeah. Laying back down now. Later...
migennes added this photo to her favorites. (44 months ago)
pi c's 80 months ago | reply
uh oh! not looking very happy here sasha :( you've got pink eye? that's no good for being productive in front of a computer :( i'm still sending the positive vibes your way though and predict the same count that i posted to your weds. photo (23,???)!
dragoninthecity 80 months ago | reply
You said it!
Love.Sasha.Lynn 80 months ago | reply
Jen - you are an awesome and beautiful woman! thanks for the cheerleading. I'm hoping to have some really high word count days this weekend if i'm not too exhausted. I just got careless with my health and so now here i am. you really rock and it really was you and your comment that inspired me and kept me writing the other night. thank you thank you thank you.
Travelinjim 80 months ago | reply
Yeah, you look really pissed at yourself. What was the gluten thing? I don't know anything about this, but I'll do some research on it. I hope you can get to feeling better soon.
sadandbeautiful (Sarah) 80 months ago | reply
Oh you poor thing! I hope you are feeling better...that sounds just awful. My SIL has a sister who is allergic to gluten; doesn't have celiac disease, but does have to be very careful what she eats. It takes a lot of vigilance and energy, it seems.
Hang in there...try not to spend too much energy beating yourself up. Put that super hero outfit back on and get back to writing once you feel up to it!
Trisha G. 80 months ago | reply
I don't eat gluten, either.
I stopped eating it when I was breastfeeding my son, who is autistic. I feel one million times better now.
Austruck 80 months ago | reply
I only know you from here, but I do know several people with severe food allergies (one includes gluten). I definitely try to back them both up at all times. And the local one invites me to her house for dinner and I ask specifically when I can (and cannot) bring. I never question her need to bring her own food to conferences, church picnics, etc. She is 70+ years old and otherwise the healthiest person I know. She skis, she gardens, and she is always on the go!
I'm convinced it's how the food problems have made her so much more aware of her eating habits in general. I would like to be MORE like her that way!
It's a shame anyone would put down your efforts at health! Dieting is one thing (and bad enough when people tempt me with "treats" I shouldn't have), but health issues are entirely different!!
You go, girl! (Word count and food!) You're ahead of me on word count and I have NO excuse! Not sick, just whiney. ;)
shauna | glutenfreegirl 80 months ago | reply
My dear, I know. I know, I know. You've captured it perfectly in the photograph — how one little bit of it can turn us into different people. Your words are beautiful.
Keep up the water and patience and rest and it will pass. Thankfully, it will pass.
Love.Sasha.Lynn 80 months ago | reply
Thank you everyone. It will take a few days to be some semblance of myself again. It seems that depression always strikes and emotions run raw when gluten enters the mix for me.
Shauna - thank you for everything. You have been a constant source of hope and inspiration for me for the last year and half, give or take a little. You shine such a bright light for so many of us. I know you have oodles of great supportive friends, and of course the chef, but if there is ever anything you need... yeah - i'll get in line... :)
shauna | glutenfreegirl 80 months ago | reply
My dear, I feel the same. I can't wait to come to Denver on the book tour!
(I hope you don't mind, but I put a link to this photograph on my post from yesterday. I want everyone who is a family or friend of someone with celiac to see this. It is so powerful.)
Love.Sasha.Lynn 80 months ago | reply
That will be FABULOUS!!!! I owe you such a warm and giant hug!
And no, I don't mind. I felt weird posting this at first but there is a word that both of us seem to use regularly - authentic. I couldn't have felt that more than I did here.
mia3mom 80 months ago | reply
well said! thank you!
Love.Sasha.Lynn 80 months ago | reply
mia3mom - you are more than welcome. What an amazing life you have living GF with your three girls! What beauties they are!
pi c's 80 months ago | reply
ooh, i obviously posted my comment on this prior to you writing the description...which i've now read and will now read about Celiac disease as i'd never heard of it before. thanks for my bit of education today sasha! good luck on the word counts :D
Star Lit Lotus 66 months ago | reply
I am sorry you have Celiac Disease. I just got diagnose in Late August. I am glad to see that my feelings are totally normal. Thanks for sharing your experience, it really helps us new Celiacs feel like what we are going through is perfectly normal, for us.
antiglutenbookgirl 38 months ago | reply
I know you posted this about four years ago, but I just came across it from the Gluten-Free Girl blog. I was lucky--only went through 3 years of symptoms before getting diagnosed with dermatitis herpetiformis. I still get glutened on a weekly basis as my family isn't very careful. Now I'm starting to show lupus symptoms. I'm 17.
You've summed up my feelings wonderfully. Seriously, folks, celiacs aren't oversensitive drama queens. We do not get angry if you need to ask 8235894235 questions about our diet. In fact, we will LOVE you for it! Anything is better than getting glutened.