A Day As A Celiac

Eeeevil!

It’s Celiac Disease Awareness Month, which is seriously becoming my fav month of the year.  You guys might have noticed that I love, love, LOVE raising awareness.  Frankly, I am super good at it.  I’m committing to doing lots of posts this month to support the awareness effort & I thought I’d start with one about what it’s like to be a Celiac.  Join me on a typical day!

(A little note:  This is NOT written for pity, but to make you aware.  This is not exaggeration.  This is what a Celiac really goes through and must really think about each and every day.)

7 AM:  Getting outta’ bed . . . most of the time this is no big deal, but sometimes the fatigue is practically indescribable.  These days when I am desperately tired (even after sleeping for eight hours), it is usually related to some of the havoc Celiac wreaked on other parts of my body and that are still healing, but once in awhile it is due to a glutening.  There should really be another name for “tired,” when you are a Celiac.  It is on a whole other level.

7:30 AM:  Time to eat breakfast . . . My home is 100% gluten-free and 99% grain-free (there’s a jar of white rice for my hubby & daughter), so I cook my breakfast with no concern of cross-contamination.  In a “shared” household a Celiac might have to be careful navigating the toaster or the frying pans.  That’s right, if you are a Celiac, you can’t eat g-free toast made in a toaster that toasted regular bread!  I swallow all my supplements.  Are they all gluten free?  I check and recheck them constantly.  I label read all day, every day.

8 AM:  Getting ready for work . . . I don’t shower with shampoo, ’cause lots of shampoos have gluten in them.  (I think most of you know I use the No ‘Poo method.)  I only use one particular brand of body wash, ’cause it’s 100% g-free.  I wash my face with oil, ’cause oil is gluten free.  (I think most of you know I use the Oil Cleansing Method.)  I use shea butter as moisturizer, ’cause lots of body lotions contain gluten.  When I put on a lotion with gluten, my skin turns red and starts to sting and itch like crazy.  I use only one particular brand of deodorant, ’cause it’s 100% g-free.  Now the biggie . . . brushing my teeth.  Gluten in toothpaste is for REAL!  WTH?  I am very careful about toothpaste (the brand in our home is g-free) or I just make my own (baking soda & hydrogen peroxide).  I occasionally use a little hairspray, but no other hair products.  Why?  Gluten in so many of them.  Putting on my makeup is also a g-free affair.  If I use a mascara with gluten in it, I feel like 1,000 fire ants have been let loose directly in my eyeball and the whites of my eyes turn beat red.  Attractive.  I don’t wear lipstick or gloss at all anymore.  Gluten!  I use a little g-free lip moisturizer and that is it.  ANYTHING that goes near my mouth MUST be g-free.

8:40 AM:  Heading off to work . . . thank the Lord, driving is gluten free.  While I’m driving I can quit thinking about gluten for 20 flipping minutes.  Aaaah, soak up the relaxation, ’cause the next stop is alot to navigate.

9 AM:  Starting the work day . . . I put my lunch in the fridge.  So far, so good.  I made all the food at home, myself and it is all in sealed, glass containers inside my lunch sack.  No chance of cross-contamination yet.  I sit down at my desk and get to work.  Then I smell the Keurig fire up.  It smells great (although I almost never drink coffee now), but it also smells like potential glutening to me.  Not all K-cups are gluten-free and the nature of the machine means cross-contamination could easily happen.  I make myself a mug of peppermint tea (I bought the tea & I know it is gluten & soy free).  I stop thinking about gluten long enough to crunch numbers.

10:30 AM:  I start feeling a little sick.  It’s not like getting a cold.  It’s not like I’m “mid morning hungry.”  It’s not like . . . anything that anyone, but another Celiac, could understand.  My body just doesn’t feel good.  It doesn’t always run at perfect, tip-top shape anymore.  I start to wrack my brain, could I have gotten glutened somehow?  Is this going to build into a major set-back?  I try to brush it off.

1 PM:  Time to eat some lunch . . . Here we go, this is where the real anxiety comes in.  I carefully avoid my food being anywhere near the office toaster oven.  I practically examine with a microscope the glass office dishes, before putting my food on them and heating in the microwave.  Sometimes I re-wash the dishes before using and while I’m doing that, I berate myself for not remembering to bring my own “g-free only” sponge for dish washing.  (That’s right, a sponge can spread cross-contamination.)  I make very sure that my food doesn’t actually touch any surface in the microwave.  I make double sure that the fork I grab out of the drawer isn’t sitting anywhere near a stray crumb that may have fallen in the drawer.  After navigating the office kitchen, I head to the conference table to eat with the other gals, who are ordering take-out.  They don’t even ask me anymore, which honestly does not hurt my feelings at all.  I appreciate that they know and show me they care by not repeatedly asking me to join in on something they know I can’t do, but I take a few seconds to be sad.  That aspect of socializing is over for me . . . like eating at a wedding, a birthday party, a baby shower, at a ball game, at happy hour, etc.  I can still participate in all these things, but I can only do it 100% safely if I bring my own food.  One little “slip up” could mean I pay for it for months.

(A little note about my co-workers . . . they are awesome & could probably educate the heck outta’ some people with their mad Celiac knowledge.)

1:30 PM:  Back to work . . . I do some quick internet surfing and see a ridiculous piece of misinformation about Celiac Disease by a celebrity doctor.  This is where the frustration starts.  I feel like I have to spend a piece of every day either apologizing for or explaining AGAIN this disease.  Shockingly, the people who seem to be the least educated about it are doctors.  Speaking of doctors, I have to leave work today for yet another round of blood draws.  I’m still in the relatively early stages post-diagnosis and I constantly have to get lab work done.  Are my B vitamin levels normal and staying there?  What about iron?  Are there signs that my thyroid has been affected too?  What about blood sugar and of course, gluten antibody levels?  I have to spend alot of time planning how to get to all my doctor and lab appointments in, while staying on track with my job and not losing my mind dealing with the insurance company.

3 PM:  Time for the lab . . . I slip out of work for a quick blood draw.  I’ve had countless draws over the last two years.  After passing out cold during a draw a little over a year ago, I developed a terrible fear of the process.  Bad news for somebody who has to do it all the time.  I ask a co-worker to come with me, I request a special lab tech (a lady I know is quick & careful), and by the time it is all over I am sweating with fear.  I head back to work, hoping that I don’t develop the huge bruises and clots that I’ve had in the past.

5:30 PM:  Heading back home . . . aaaah, the relaxing g-free drive.  Oh gluten free activities, how I adore you.

6:00 PM:  Dinner time . . . again, I am so lucky.  My household is 100% gluten free.  I relax knowing there is no risk for me in my own home.  My two biggest supporters, my husband & daughter, can even be trusted to make the meal.  Not only have they learned how to cook g-free, but they know how to cook AIP.  I’m totally safe to eat without fear.  I swallow my third pancreatic enzyme of the day and start eating my dinner.  My pancreas is insufficient due to Celiac.  If I want to properly digest my food, I need the help of a little enzyme pill before each meal.

7:30 PM:  I try to make plans with someone and it doesn’t go well.  I can’t do most activities on the spur of the moment anymore and big trips require huge amounts of planning.  I can’t be dependent on others, if I want my food to be safe.  Some people are so kind in trying to adjust to the demands of my disease and others are depressingly insensitive.  A year later I am still surprised at who really cares about my diagnosis and who doesn’t care at all.  I would have never guessed at some of the more painful interactions.

9 PM:  Bed time . . . I have lots of good days now, but sometimes bad days still happen.  If this is a bad day, my whole body is aching and tender to the point I can barely be touched.  I can feel that my digestive system is struggling to do what it was designed to do and my brain is in a thick fog.  It might be tough for me to get good, deep breaths.  I might wake up with a racing heart and sweating profusely or with a sharp pain in my lower back.  Sometimes I experience the symptoms of neuropathy, tingling and numbness in my legs or arms.  I absolutely dread the thought that it would ever return to my face.  These days I just calm myself with the words, “This is just Celiac Disease.”  And it helps, because now I have a name for the strange symptoms and a method (even if it means constant, intense vigilance) for dealing with it.

About Angie Alt

Angie Alt is part of the blogging duo behind Autoimmune Wellness. She helps others take charge of their health the same way she took charge of her own after suffering with Celiac and other autoimmune diseases; one creative, nutritious meal at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She’s also a world traveler who has been medically evacuated from two foreign countries. Strategizing worst-case scenarios is now something of a hobby. She is a Certified Health Coach through the Institute for Integrative Nutrition and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol. You can also find her on Instagram.

3 comments

  • […] Day As A Celiac can now be found HERE, at Autoimmune Paleo, where I and my blog partner, Mickey Trescott, now blog.  Thanks for […]

  • Katherine says

    This has come in so useful to explain to family and friends what I’m going through and how important it is for me to know if things are gluten free! Thanks SO much, Angie!

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