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Explaining Celiac Disease to Others

Explaining Celiac Disease to Others

So May 1 kicks off another celiac awareness month. I always get a little torn about this month. Too many in the community use it as a month to promote shitty gluten-free foods, which not only doesn’t help raise awareness, but also is not even beneficial to the community. I’ve said it before and I’ll say it over and over again…the ONLY way to heal from celiac is to eat mostly clean. I’ve done it and most of the time I don’t even feel like I have the disease anymore.

But I do want to do my part to continue to raise awareness. There was the year I blogged every day for the month of May. I got so desperate, I even wrote a celiac haiku. No…seriously…I did.

Then two years ago, I launched the Faces of Celiac Disease to promote awareness. That’s still going strong (and is one of the favorite parts of my blog!)

So I’ll kick this month off with some education. Sadly, our disease is still greatly misunderstood and under-diagnosed. The only way to change that is to continue to educate the masses as much as we can. Not about the food, but about the DISEASE.

Let’s say someone asks you “Hey, what the heck is celiac disease anyway??” Here is what I would tell them.

(Dude note: The following appears in the current issue of Simply Gluten-Free magazine. Please check them out.) Ok…here we go.

Celiac disease is brutal. Celiac disease is life-long. And celiac disease is greatly misunderstood. Why is it misunderstood so much? Well, I’ve got my theories. First is that there is no cure and no drug and no expensive treatment. It’s not a sexy disease, if that makes any sense. Hence, it’s not talked about much and when it is, it is almost always discussed in relationship to the gluten-free diet. Which leads me to my second theory. The focus is on the treatment, not the disease. It’s bizarre really. Name another disease where the treatment gets far more attention than the disease itself. It’s honestly all about the dang food.

Who do I blame for that? Pretty much everyone.

  • The media, for obsessing over the gluten-free diet, turning it into a complete fad and the butt of endless jokes, from late night TV hosts to greeting card companies. Everyone is in on the joke, except for the celiac community, who cringes every time another one is made at our expense.
  • The government, for having unbelievably lax label laws and basically rendering a “gluten-free” label meaningless (and yet we still look for the label and trust it.)
  • The food companies, who are more than happy to slap gluten-free on any product they deem safe, knowing full well that there is hardly any policing and the odds of them getting caught are slim to none. The gluten-free market has exploded and while I know many of my fellow celiacs don’t agree, I don’t think it’s a good thing. I don’t need 25 kinds of gluten-free bread and 33 kinds of gluten-free crackers. What I need is to be kept safe. Period.
  • And lastly, we, the celiac community, are to blame. We are all about the food. I quietly belong to a few celiac support groups online. 9 out of 10 posts are about food and more than half of those are about crappy food. Food that does not allow us to heal. Food that…well…isn’t really even food.

So with all of the attention on the food, how do we get across to others that celiac is an extremely serious condition? Good question. I’d like to think facts are a good place to start (although in today’s political climate, that is up for debate.) So let’s start with some basic celiac facts.

  • Fact: Celiac disease occurs from an interaction between genes, eating foods with gluten and other environmental factors, but the precise cause isn’t known. (
  • Fact: About three million Americans suffer from celiac. (And two million spouses suffer from all of the bitching and moaning).
  • Fact: There is no cure for celiac…only treatment via a STRICT gluten free diet.
  • Fact: Over 90% of celiacs are undiagnosed or misdiagnosed (costing our healthcare systems millions of dollars unnecessarily).
  • Fact: Half of all people with celiac disease do not show any symptoms.
  • Fact: Even something as small as a bread crumb can inflict intestinal damage for somebody with celiac (this is why cross contamination is so important).
  • Fact: You can test negative for celiac and still have the disease when it is “triggered” later on in life.
  • Fact: Once celiac is triggered, it is a life-long disease.
  • Fact: Some products, like lipstick, toothpaste and vitamins, use gluten for processing but because it is not food, does not need to be labeled.
  • Fact: Celiac disease sucks. Ok fine…technically that’s my opinion.

Then I would begin to dig in to the symptoms. Most people just assume that if we eat gluten, we’ll get a bit of a tummy ache and spend some time in the loo. It is so much more than that. Yeah, the stomach issues can be awful, but more than half of adults with celiac disease have signs and symptoms that are not related to the digestive system, including (credit to

  • Anemia
  • Osteoporosis
  • Dermatitis herpetiformis (DH)
  • Damage to dental enamel
  • Mouth ulcers
  • Fatigue (oh my…the FATIQUE)
  • Cognitive impairment
  • Joint pain
  • Reduced functioning of the spleen

I did a survey of the celiac community a few years ago asking for their most common celiac symptoms. The most commonly mentioned? Brain fog, short temper, frequent miscarriages, acne, brittle nails, hair loss, headaches, and a whole lot more. So yeah…I’d say our disease is more about a little belly ache.

So if we can get the accurate FACTS and complete list of SYMPTOMS out to the world, I think it would not only be educational, allowing others to understand what we go through, but also the more people knew, the greater the diagnosis rate would be. They’d be asking to get tested for celiac disease at a much higher rate. Talking about the latest gluten-free bagel doesn’t quite the same effect (are you listening my fellow gluten-free bloggers?)

Lastly, I love sharing content that comes from my readers. If I was the only voice that you heard on my articles, I’d be cheating you because the community has some awesome things to say. The following goes a few years back but speaks volumes regarding WHAT IT’S LIKE TO HAVE CELIAC DISEASE. She nails it.

So many times we look okay on the outside and no one can see the bone-weary tiredness, the aching joints, the fuzzy brain, and/or the war going on inside our bodies. We go to work when we don’t feel well because we have to. Our sick leave is reserved for times when we simply can’t function at all or for the multitude of doctor visits that are sure to arise from other complications caused by the disease.

Our “tired” when we’re glutened is not the same “tired” that you feel. There should really be a new word invented for the “gluten tired” that makes it a Herculean task just to walk through the house.

We often smile and chat with people because we feel we have to. Sometimes our jobs depend on it. Sometimes we have social occasions that we must attend and don’t want to be the guest that dampens the entire occasion. (i.e. weddings, business dinners, family holiday celebrations).
When we come home we are spent physically and emotionally. It takes a toll on everyone, but especially loved ones who get the short end of the physical and emotional stick. In other words, know that we become good at smiling through the pain for others because we have to, but appreciate NOT having to do that with the ones we love.

Don’t take offense if she doesn’t want to be touched at all. Know that sometimes a gentle hug or caress can hurt. My husband loves to put his arm around my waist, but if I’ve been “glutened” I will flinch and draw away as a reflex. What he can’t see is that I feel like my abdomen is an overflated balloon. I have even looked in the mirror sometimes thinking I must look six months pregnant and am surprised to see that I look no different.

Know that advance plans are scary for us because we never know from day-to-day how we’re are going to feel. That event scheduled two months from now can’t be fully appreciated until the day before.

Sometimes things that are exciting for most people like cruises, resorts, and multiple destinations are scary for us. Buzzwords like “all-inclusive” are particularly horrifying because we’re locked in to where and what we eat . Part of the fun for any trip is sharing meals. Unfortunately, for us that becomes the biggest stress and fear. Throw in a trip where we don’t speak their language and the fear is magnified.

That is celiac disease.

Pretty powerful stuff, huh?

What are you gonna do to spread awareness? The ball is in your court.


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