Words to Live By

When I started this blog, I was determined to keep my posts upbeat and inspirational. I’d spent too many years in a funk feeling depressed, lethargic, sick. I’d sat in too many sterile rooms listening to white coats tell me I had IBS (or GERD, or endometriosis, or fibroids, or a bad gall bladder). I’d had too many surgeries and medical procedures (for IBS, GERD, endometriosis, fribroids, and a bad gall bladder). I’d taken enough antibiotics to treat a third world country, popped more prescribed pain killers than I suspect many addicts do, and endured most of the naturopathic remedies the gal at the local health food store suggested. My favorite being the mercury-releasing bath that caused the need for a plumber, but we’ll save that story for another time.

Yet after all this, I still spent days on the couch curled into the fetal position.

Then I was diagnosed with Celiac Disease and Multiple Food Allergies and EE and Leaky Gut.  Finally I knew what was wrong with me! I immediately felt relieved. And although there was some initial panic that I might starve (I’m allergic to a page worth of foods), I felt strong enough to take my autoimmune system on. Give me a sword (sorry, I’ve been catching up on The Borgias)! I’d gallantly overcome my health problems and then I’d ride off to help others. Note my blog’s tag line: Don’t let celiac disease and allergies hold you back!

Little did I realize the “others” would include my own 20-year-old son.

While Steve was away at college, gluten became his enemy. The kid who lived on Kraft Mac and Cheese and red licorice throughout childhood couldn’t ingest a cookie crumb without being knocked to the ground.

Suddenly I found it hard to be upbeat. No mother wants her child to suffer, and certainly not suffer with an illness her genes likely passed on. For the last few months when I tried to write, all I wanted to do was whine and pout and stomp my feet. And who wants to listen to a middle-aged mother’s tantrum? Afraid of losing all five of my readers, I erased my negative words.

Now I know plenty of people suffer health issues far worse than gluten intolerance (the young girl with cystic fibrosis who is waiting for a lung transplant comes to mind). Steven’s health issues are not life-threatening and they are manageable. I know this. I also know firsthand how getting sick from gluten negatively impacts one’s life.

And he’s just a college kid . ..  who wants to be like all the other college kids.

Because his body no longer likes gluten, my son’s youth has been drastically changed, and he’ll never go back to the way it was. Always getting “glutened,” his weakened immune system can’t fight off cold germs and he’s constantly sick. When he comes home from college, he turns down his high school buddies invitations to hang out at the local hamburger joint. Back at the university, he can’t share a late-night pizza with his roommates, or even be in the same room as their leftover crusts. He turns down offers of birthday cupcakes and treats the professors bring from home. Fortunately, since he’s underage, beer isn’t an issue. 🙂

And don’t get me started on the school cafeteria! The staff has never heard of cross-contamination. What do you mean you can’t slap the GF bread down on the same counter with the non-GF bread? One worker insisted celiac disease was all in Steve’s head and what he needed was “some good white bread on his skinny bones.” (I’m hoping this was an attempt at humor but still . . . ) In the apartment-style dorm with a kitchen, roommates left cereal and cookies everywhere and cooking utensils were never washed. As a last resort, Steve found a house near campus along with roommates with who get the whole gluten thing. They’ll move in together this fall. Stay tuned.

Oh yeah and it hadn’t even dawned on any of us that being gluten-free would make getting a summer job difficult, especially when all of his experience is restaurant-based. There is no way Steve can work in a restaurant now, and he has no retail experience. Anybody hiring in the Nashville area?

Still, my sweet boy doesn’t complain. Like his mom felt a few years back, he’s just glad to know what’s wrong with him and that removing gluten from his diet will make him feel better. This summer he’s learning to cook and he’s resumed his old workouts and outdoor runs, hoping to gain back some of the weight and muscle he’s lost. Summer classes are going well–now that he doesn’t have a constant fuzzy brain or a bellyache. He’s grateful to have a GF kitchen, transportation to the local Whole Foods and Costco, and a mom who sends GF care packages.

Some gluten-free goodies for the college student

Some gluten-free goodies for the college student

During a recent visit, I told Steve how sorry I was he inherited my stomach issues. He shrugged his shoulders. “It’s not a big deal,” he said before grabbing an apple. “Stuff happens.”

Stuff happens. Now those are inspirational words.

Gluten Free in College Blog Series

9 thoughts on “Words to Live By

  1. princessandthepea1 says:

    Thanks for sharing this. I can relate to your feelings having our son diagnosed at age 5 with Type 1 diabetes. So difficult to watch your children suffer on ANY level, be it bullying, learning challenges or physical illness. We want so badly to be able to take it away for them so they can have the unawareness of any kind of pain or stress. I remember our son the day after his diagnosis in his hospital bed saying, “diabetes isn’t so bad all I have to do is eat properly and take my insulin, I can still walk and talk and breathe and lots of other kids in hospital can’t.” I also recall him saying at age seven…”I just want to stop thinking about diabetes for one minute. Just want to be able to eat what I want when I want and not have to eat when I’m full and not eat when I’m hungry.” Kids are resilient but wow the challenges some have to face is certainly heartbreaking for parents to watch, when you would literally die if it meant they could be cured.
    Don’t get me started on how the ‘world’ accommodates, allergies, diabetes or anything that they perceive to be, hmmmm, what words shall I use…’inconvenient for them’. Some people are so clueless and selfish and mean. It affects every facet of every minute of your life and yet they can’t possibly conceptualize changing anything while blissfully enjoying their illness free existence. Everyone has issues and stresses I realize, but the world would be so much better if everyone was just kind to each other.


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