Celiac Rant: You Don’t Look Sick (#$@&%*!)

mom doesn't take celiac seriously

Life is all about balance. We work hard, we play hard. We eat, we exercise. You break the law, you pay the consequences (right Kim Davis.) We have Democrats and Republicans. Peanut butter and jelly. Tom and Jerry. Elliot and Mr. Robot. Tyler Durden and Tyler Durden.

And on this blog, we have “focusing on the positives” and “allowing ourselves to rant”. We haven’t had a good rant in a few weeks, and since I just posted 75 Reasons to Love Celiac Disease, the time is ripe.

Take it away my fellow frustrated celiac.

Hi,

I’m 31 and I found out that I had problems with gluten when I was 25 and pregnant with my second child. I was getting attacks of dermatitis herpetiformis, which if you’ve never had it is a horrible blistering rash that itches so badly you would happily peel off your own flesh to relieve it. If I get exposed to gluten now I still get the rash as well as the agonizing cramps, joint aches, mental fog….you know the drill. I had just lived with the tummy ache for years, almost as though it was totally normal. I don’t remember a time when I was a teen that I wasn’t bloated and suffering stomach cramps, with constantly red cheeks and those weird little bumps all over my arms. I had low iron for years and no medical professional ever made the connection. Sigh.

Anyway, on with the rant. These are the things that have boiled my blood over the years.

“Everything on the table is gluten free.” Not true. When I called later on that night in agony, asking my mother to check the ingredients on the crisps (potato chips) that I ate, she said “but of course they’re gluten free! They’re POTATOES.”

“It’s Christmas. Really?! Do you really need to ask what’s on your plate, today of all days?” Yes. The same as any other day. Santa didn’t bring me a cure for autoimmune diseases.

Aren’t you bored of this yet? Time to move on, perhaps?” Bored of the dietary restrictions- yes. Bored of feeling healthy- no. Never will be. Time to move on?! Oh, how I wish!!

“I made this whole tray of brownies and you won’t even have one tiny piece? For me? Oh my god, sometimes I think your “diet” is really selfish and stupid.” Said with her fingers actually doing the air quotes around “diet.” Yeah. The reason I’m saying no to delicious baked goods that smell so tantalizing that I might burst into tears is because I’m selfish. I am spiteful. I hate to feel included. I want to be on the outside, hungry and sad when I’m not catered for. Idiots.

“It WAS GLUTEN FREE!!! What? What do you mean, did I use the same serving spoon? Of course I did! Don’t try telling me that’s a problem. I knew you when you were little and it wasn’t a problem then!” That’s because autoimmune conditions can develop at any time, doofus. And, yeah- when you’re sensitive to something, you’re sensitive! Try pulling this crap on someone with a nut allergy. See how it goes down.

And my absolute favourite – “Yeah, well you don’t look ill.” I’m not ill. I can’t tolerate gluten. If you give me some gluten and come and see me in the morning, I would look ill then. Would that please you? Should I prove to you how much this stuff hurts me??

People are so judgemental. Like they’re trying to catch you out. As if anyone would choose to rigorously stick to this regime if they didn’t have to. That’s why the fad dieters don’t last! Because it’s isn’t a fun way to live!

Grrrrr!!!!

Need to Vent?

I hate celiac. You hate celiac. We all hate celiac. With all that pent up anger, people need a place to vent.

Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away. There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner. Positive energy brings positive results.

Email me your anonymous rant.

Don’t you feel better already??

Dude note: If you didn’t understand my Tyler Durden reference, watch Fight Club. Now. And if my Mr. Robot reference flew past you, season 1 just finished and it is on Breaking Bad level. Amazing acting. Cool cinematography. Great story. The Dudette and I were mesmerized every episode. Find it. Watch it. That is all.

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15 thoughts on “Celiac Rant: You Don’t Look Sick (#$@&%*!)”

  1. One of my favorites (not) – “Allergies sometimes disappear.” NOT AN ALLERGY! GRRRR! Then there is “but you look so healthy”. Yes, because I avoid gluten, and you don’t see me after an exposure because I’m usually feel to bad to socialize or even take care of everyday things. Then there’s “but you’re so fit” and “you have great willpower”. Well, it’s because I choose not to lose weeks (yes, weeks) of my life. And let’s just consider the looking “fit” part a fair? trade-off because I can’t eat most of the junk everyone else can. If I could, I would be eating chocolate cake for breakfast!

    On a more encouraging note, I have noticed that it has really helped that I changed my approach when explaining it to people. And I have told my friends and family that I will self cater, period. I do not ask their permission or blessing. It is self-preservation and if they get upset about it, that is their problem. So far, all good.

    1. My sister once told me this too: “Sometimes allergies disappear when you are pregnant…” Great. I mean my seasonal allergies are a pain in the butt so that’d be nice to get rid of. Oh wait. You mean celiac disease? The autoimmune disease??? Not an allergy.

      I self cater as well. On almost all occasions. It’s just not worth the risk, especially when I’m becoming such a proficient cook 🙂

    2. My aunt told me that I grew into Celiac Disease so I’ll probably grow out of it soon too. I couldn’t even respond. I just nod my head and smiled while clenching my teeth and screaming on the inside “ARE YOU CRAZY?!”

      I’m currently on my first day post glutening myself. Last night I became violently ill after consuming an entire box of mac and cheese which was not in fact gf. I have no one to blame but myself. I bought a bunch on sale and must have grabbed one that was mixed up with the GF boxes. The worst is over now but I’ll be paying the price for a week or two with DH, exhaustion, brain fog, etc. I will certainly be more careful in the future as well.

      I do wish others understood a little better that ingesting gluten is NOT just a stomach ache for us with Celiac/gluten intolerance, it can take weeks to feel normal again. Sometimes I feel like even those who are closest to me and completely support me don’t entirely understand how crappy it can be at times. I’m not doing this for attention, if anything, I’m sick of people asking about it/bringing it up alllllll the time.

      Great to know there’s a place to read and vent with others who are going through the same struggle.

      =)

    3. Love this comment ! baam,got it in one. Although Im use to self-catering its still exhausting to explain it,when people arent genuine and dont want to understand.I feel ignored as if it isnt serious or a real problem.

  2. Well thought out & truthful rant…

    Only my closest friends, business compadres and those I must tell for safety’s sake know how ill I’ve been, thus my social media pen name.

    My closest friends will most likely know the reasons when I kick the bucket and all others will remark “I know I never saw him as much anymore but I didn’t even know he was sick – he still looks so healthy!”

    Balance in all areas of life is a good thing!

  3. This reminds me of when I was in my 20s and had a hidden heart ailment (Wolf-Parkinson-White, since cured by surgery). I “looked fine” to most people, so they couldn’t understand why I wouldn’t join them for that marathon/night out dancing/5 mile hike at the beach. People don’t understand what they cannot see.

    Fortunately, most of my family members can remember seeing me covered with rashes or remember my trips to the ER after holidays (Thanksgiving being particularly evil) before I stopped eating gluten and dairy — at least well enough not to be unpleasant about my diet. (I do wish they would stop “going out of their way” for me, though –inevitably, there is something forgotten, like the wheat-tainted chicken broth used to baste the shredded chicken for the tacos. Small sigh.)

  4. It’s sometimes seems as if delicious foods are so psychically and physically fundamental that people can’t think straight and empathetically for even a nanosecond before they try to force themselves upon their Celiac, fancy pants, unicorn wannabe friend or relative. Food and sharing must important for those people, the dopes.

  5. Catered Wednesday night meals at our club meeting – this is the statement on the invitation: “For those of you with special food needs, feel free to bring your own.” In my ranting mind all I see is: “Sorry about your bad luck, bring something you can eat and sit with those of us who just have to show up and eat a premade meal that is served to us.”
    No, not so much. I have to make special plans and buy gluten free food to make a simple meal to transport over to the club and then answer a bazillion questions as to why I have my own food. Just bring your own doesn’t make me blend in, feel a part of the crowd, feel included because after all, you are there just to have fun not focus on the food! Then why are we gathering to enjoy each others company around FOOD!
    Gluten free eating is the strictest form of disease control, via food, that I know of. Diabetics (my mother was diabetic) need to be/should be very strict too, but do you hear about their travails when eating out or in a social setting. Seems only the Celiac gets slammed for being so strict. Yes, I am healthy looking BECAUSE I’m so strict.

  6. My dear friend seems as if she is trying to understand how truly sick i am with Celiac. Upon inviting me to a picnic she states “well got some rest and do your best” in regards to me being able to stay late. I was like what? Do my best as if i can “bank” sleep and make my body just magically feel better by telling it to ” do its best!”

  7. I am ropable tonight about something unacceptable that happened today. My husband, who has been completely work focused lately, took me out for lunch and it was just a really lovely casual eatery local to us which I had tried recently and wanted him to experience too. We ordered a side of vegetables as I had previously and yet this time they came with a red coloured sauce on them. I immediately asked the waitress if it was GF. She said it was (referring to the sauce specifically) and I told her I am coeliac and to please double check with the chef – she did and came back confirming it was safely GF. A reaction was experienced. As the day wore on I became more convinced it was indeed a gluten reaction. I have written an extremely strong worded email to this restaurant expressing my disappointment at this complete disregard of a serious illness – Annoyed beyond belief and I am going to make it my mission to educate the world about the effect of this on our community- my coeliac rant of the year !

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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