Late this morning I check my emails to find this headline from ABC News:

Top 10 ‘Yuppie’ Health Conditions
Doctors May Swear an Illness Is Real, but Some Conditions Still Meet Skepticism

First Health Condition on the list:

Wheat Allergy or Celiac Disease or Gluten Allergy

Really? The people who are skeptical haven’t been through what many of us have been through: Years of fatigue and stomach pain, embarrassing moments of vomiting and diarrhea, migraines, infertility and significant bone loss. Compound all of these seemingly random symptoms with pointless doctors’ appointments and co-pays where your diagnosis still remains elusive.

The Celiac Skeptics in my Past

The frustrated tone of this post comes from the passion in me – I can’t help it, it strikes a nerve. During the height of Emma’s illness, I called out sick from work a lot. She would wake up and throw up! Well when you don’t know what’s wrong with your kid, you can’t take them to daycare when they throw up an hour prior to dropping them off.

My bosses seemingly understood at the time, clearly they knew I was upset – but this is where the article’s discussion of skepticism comes into play in my experience. In the first year following my daughter’s celiac diagnosis, I was punished with unpaid sick time when my daughter had whooping cough (despite the fact that my company at the time had unlimited sick days). In 2001, I was told my husband needed to spend sick days with our daughter and not me. Also that I was on pace to have as many sick days as I had in 2000 when Emma was really sick.

I remember being hurt, frustrated and really knowing deep down inside they didn’t get it. They not understand I didn’t want to call out sick each time I was vomited on or “diarrhea-ed” on or had a sobbing, inconsolable baby because she was so sick she couldn’t tell me what was wrong. I knew she was sick, but we didn’t know what the problem was. In my defense, I recommended they look back farther at my absence record and tell me what they found..was it someone who consistently missed work with “mysterious” illnesses? (Incidentally, what they would have found is no—I was hardly ever absent from work). The people who were ripping into me were likely “skeptical” as this article mentions.

I was in my early 30s at the time, certainly old enough to know better and take some action to ensure I was treated equally as all the other employees. But I am not one to rock the boat – until it’s absolutely necessary. I didn’t figure out that I should have raised heck with human resources (as a first step) until it was too late. Instead, I had quit to stay home with Emma and my new baby.

As I look back, I do feel it was the people enforcing the “rules” and likely not so much the rules of the company. But I wasn’t smart enough to take on the “skepticism” that fed into what I believe were irrational punishments and reactions to my daughter’s health issues.

Fighting the Celiac Skeptics

Where do you see the “skepticism” in your life? Is it with family or friends? Or with employers – like in my situation. I bet if you look deep enough you’ll find it. The ABC News article is actually good. It has a ton of facts about the disease and interviews from the Celiac Disease Foundation and the Center for Celiac Research at the University of Maryland, about why celiac disease is a real health issue.

In the time after the year surrounding her diagnosis, I have thrust myself into celiac awareness, helping organize fundraisers for the CFCR. So maybe that skepticism needed to happen for me to light the fire inside and make a difference – who knows! As an aside, I actually ended up going back and working at the same company under a whole new management team in 2003 and had an excellent regeneration of my career. I was promoted and ended up “retiring” of sorts from the business in 2007. Which also goes to show—don’t burn bridges. But to use one more cliché, don’t get thrown under the bus either. Know when you’re right factually and in your heart and maybe we can help convince the skeptics.

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One Response to “Gluten-Free a “Yuppie” Diet? Celiac Skeptics — Get Educated!”

  1. Amy
    Saw this today and had the same response. At the Celiac Conference in Columbus, one of the doctors who presented said something like “You are crazy until I find out what’s wrong with you. You are sane now that you’ve been diagnosed with celiac disease.”, as an example of how we are treated. You should have heard the agreeing hum in that auditorium and the barely suppressed anger of some of the folks. They also had a psychologist talk abou the emotions of diagnosis. She didn’t cover the anger enough or the mistrust of the medical community that treated people like emotionally unbalnced whiners, just the depression and guilt side of being a parent with a celiac child.
    You are on top of all the current issues. Keep up the good work and I’ll keep cooking.
    Wendy

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