Did you know that today is Celiac Awareness Day?
That’s right…our disease is so big that we get our own special day to try to spread awareness. Heck, we even get our own month, which happens to be the month of May. (And yes…there is a reason why our DAY is not in our MONTH, but I totally forget what it is.)
And yet we still need to shout to the heavens at times to be taken seriously.
So…in response to this paradox, the question becomes “how should I spread awareness?”
Do a giveaway?
Share my favorite recipe?
Nah…I should stick to what I do best; calling out people who don’t give celiac disease any credibility whatsoever. It’s a tough job, but someone’s gotta do it.
This story is something special folks.
We’ve all read the stories of family members who make a celiac’s life a living hell. We’ve all read the doctor horror stories from those whose doctors refuse to acknowledge celiac as a real disease.
But what if the person was both a family member AND an MD? Well, then you’ve got the latest Dear Gluten Dude.
Yay Celiac Awareness.
Dear Gluten Dude,
If you decide to “publish” my letter, please don’t include my name as I have enough family drama to deal with as it is.
I wanted to thank you for sharing letters of Celiacs who contend with troubling family issues surrounding their diagnoses and dietary needs. I am among the ranks of those who live with Celiac, and who hail from generally unsupportive – alas, often downright cruel – families. I dread family get-togethers and holidays because “my diet” generally manages to become a focal point of verbal abuse – despite my pleas for people to just cook and eat whatever they damn well please. I never expect anyone to accommodate me.
With Thanksgiving and Christmas on the horizon, I am already bracing for this year’s barrage of attacks and guilt trips.
Did I mention that two members of my immediate family are MDs? You read that right. One of those MDs is especially caustic with her “anti-Celiac” comments. Her choice to be downright ignorant and insulting in the context of my diagnosed medical condition is beyond hurtful.
They both have used terms such as “paranoid,” “OCD,” “unnecessary,” and “misguided” in reference to my efforts to avoid gluten. One of them cited some opinion piece in the NY Times (um, that’s not peer-reviewed professional literature) about gluten intolerance and Celiac disease being “fad diagnoses” – implying, of course, that I jumped on the GF bandwagon without a legitimate medical reason to do so.
One of them literally rolls her eyes and sighs almost every time I decline to eat something, or suggest that we could modify a recipe (or that I could make a GF version to bring to the event). The eye-rolling gets especially pronounced when I express concerns about really obvious cross-contamination hazards.
The spouse of one of these MDs recently referred to Celiac as “a convenient excuse” to not participate in family events. That wasn’t a ridiculously hurtful/insulting or anything.
At any rate, I am fortunate to have found a handful of good doctors who take my diagnosis seriously, who respect my need to stay strictly GF, and who fight my insurance company to pay for brand-name meds when the generic forms have gluten in them. I only wish the doctors in my own family were so reasonably well-educated on the topic, and espoused such a humane “bedside manner” with their own kin.
I thank you for supporting those of us who are dealing with downright hostile families. This condition is difficult enough to live with as it is. Thank God my in-laws are actually quite kind, and even accommodate my diet with gluten-free offerings at family events. I keep praying my own family will catch on. Perhaps they will read some of the peer-reviewed literature in their medical journals, and realize I am indeed adhering to the only treatment option I have.
God bless you and your readers, Gluten Dude. You make my struggle a little brighter.