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

Celiac Disease Wasn’t a Part of the College Plan

Within weeks of my celiac disease diagnosis, I had my two sons tested. Both grew up with “sensitive stomachs” so I was surprised—yet relieved—when their blood tests came back negative for CD. I knew firsthand the difficulties of cutting gluten out of a diet (along with soy, dairy, corn and a host of other foods for me), and I was glad my kids could continue their youth grazing on bagels, pizza, chicken nuggets, and burgers.  While my oldest is lactose intolerant, he simply takes a pill to help him digest dairy.

Unfortunately, there are no magic pills for those of us with celiac disease.

Fast forward five years. Sons are in college.

college life

The youngest comes home for Thanksgiving break looking gaunt. He blames the cafeteria’s food, insisting they put laxatives in the food to keep kids from getting food poisoning (a popular urban myth, I learn through a quick investigation on the Web).  My son’s had a bad cold most of the semester and no amount of sleep makes him feel rested.  (This sounds all too familiar, I think.) When he says his diet consists of bagels, sandwiches and pizza, a red flag not only goes up but waves crazily in the air.  I suggest he eliminate wheat from his diet and see if he feels better.   But he shrugs me off; did I mention he’s nineteen? 🙂

By Christmas break, he’s even thinner, paler, more exhausted, says he feels achy and dizzy much of the time.  Without any prompting from me, he decides to go a few days without wheat. Voila!  Practically overnight, he feels new and improved. One mistake–oysters Rockefeller with a smattering of breadcrumbs on New Year’s day–sends him back five steps, and we are both positive he’s inherited my CD genes (I have the pleasure of having both the DQ8 and DQ2 genes).

Surprisingly, neither my son nor I pout or panic. Okay, he pouts a little when he realizes beer and pizza are officially off-limits (he’s a college student and a guy after all), and I feel some mother’s guilt for passing my defective genes onto my child, but we’re both optimistic that he’ll enjoy college much more when he says good riddance to grains.


Goodbye gluten!Hello Gluten-Free!


Since my son has been a part of my gluten-free lifestyle change from the start, he already knows all the rules, such as never put a wheat-contaminated fork into a shared serving dish and use a separate toaster for GF toast.  He likes the staples of a celiac’s menu: quinoa, hummus, fresh vegetables and fruit, meat and fish, rice bowls, and stir-fry.  He knows to check the ingredients on everything from cold medicines to gum and to stick to the golden rule: If it doesn’t say gluten-free on the package, don’t eat it.  After years of watching me struggle in restaurants (I’m a much better advocate for my family than for myself), I am certain my son will articulate clearly with wait staff.  Are the french fries cooked with breaded foods?  Please don’t just remove the croutons on my Caesar salad; make me a new salad. Can you grill my burger on foil?

A sign you don't see often.

A sign you don’t see often.

Still, I worry.  Going gluten-free in college won’t be easy.  Like many universities, his college food service is not allergy-friendly (past parent visiting days confirmed that), and there are few restaurants within walking distance.  But my boy already has a plan: buy his own bread and get the GF-free meat and cheese from the school deli, make weekly trips to the grocery store, keep his room stocked with gluten-free snacks.   I can’t help but feel proud.  Without any objection, he takes the fastfood menus I’ve printed out and circled the GF foods.  (Yes, we know the contamination risks at such places, but a guy’s got to eat!).  Before he goes back to school in a few days, I’ll take him to our local healthfood store and show him myriad GF options that now line the shelves.  And, of course, I’ll send monthly gluten-free care packages; I’ve already made a favorites list on my computer of GF mail order companies.

Celiac disease wasn’t a part of my son’s college plan–or my plan for him. But as he’s learning, life is full of bumps.  I’m just glad he’s prepared to take this one head on.

HEalthy Life

For more reading:

College Student with Celiac Blog

A Guy Talks about Gluten

Growing Up Gluten Free

Celiacs at College

Celiac Students take College to Court