Explaining Celiac Disease to Others

what is celiac disease

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. (mayoclinic.org)
  • 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 mayoclinic.org):

  • 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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19 thoughts on “Explaining Celiac Disease to Others”

  1. Thanks GD for this post.

    In answer to your question, “what will you do to spread awareness?”, I just posted a mulit-paragraph post on Facebook about what I went through while waiting for a diagnoses for 5 years. I’m not super open on FB because I don’t want all my personal stuff shared to everyone like that, but this time I put it all out there. Things that no one except very close friends and family know. Hopefully it will open the eyes of some people and maybe even encourage them to get tested themselves.

    For the whole month, I haven’t decided what I’ll do yet. I’m thinking of posting my dinner each night, but that’s not very interesting, and it’s about food again. So, I’ll have to think about it a bit this weekend.

    Thanks again for your words.

    1. Kathleen Marie Labranche

      I was diagnosed with celiac disease fifty years ago. I was able to tolerate wheat for a short time (I thought I could, anyway) and I wound up with irreversible rickets and short stature. The re-diagnosis confirmed that, with the caveat by the GI doctor that this is a forever problem. My family had to be educated again after I became extremely sick after visiting home and eating some casserole which I think was the culprit. I checked the ingredients, seemed safe enough but cross-contamination is a real problem. Twenty parts per million seems like a tiny amount, but it is a measure of the molecules that can damage the gut and begin the inflammation cascade. I had a long drive home, but almost didn’t make it.

      I spent 2 nights in a hotel, unable to drive, and was only able to get home after an ER visit and large doses of prednisone. The other insult occurred at Thanksgiving, this time with my husband’s family. I made side dishes not only gluten free but lactose free as well to protect my sister in law. Despite all the care we took to make that dinner, on the way home my husband had to pull off the highway and hold my hair back while I lost my dinner. It happens fast, doesn’t it? Anyway, we didn’t want to tell them that I got glutened and sick, but when the subject came up we learned that someone had made a sandwich on the cutting board used to prepare other dishes.

      We made gifts of dedicated cutting boards to our families, thanks to their popularity in restaurants. They are purple and hard to mix up. I don’t travel with my cutting boards, and I don’t assume that those purple ones haven’t become contaminated. The upshot of all this? We’ve talked to many chefs. Our favorite restaurants have staff that tell me about iffy foods, even those on the menu that are GF. I’ve got a NIMA device that detects gluten and fits in a pocket.
      Holidays make us especially vulnerable I think. Educating the family has helped.

      The term “gluten free” is being replaced with “zero gluten” according to the new journals. I hope that concept spreads quickly.

      1. May I make one correction please? “Twenty parts per million seems like a tiny amount”. I believe it is less than 20 parts per mil. to be safe. I am sure you likely meant to say that 🙂

        I learn so much from what everyone says here, I like the “zero gluten” much better as well.

        Are you enjoying your NIMA? If food comes back laced, what do you do? Send it back? How does the restaurant react?

  2. This is so amazing! Thank you thank you thank you! I have followed your blog the 3 years since my diagnosis and you are always helpful. Keep it up 🙂

  3. Hey GD,
    One of the most common symptoms NOT mentioned, because people probably don’t want to talk about it, is having LOTS of GAS or FLATULENCE! My sweet mother, who has since passed away, couldn’t walk across the room without playing a tune. I remember buying her a button that said HE WHO FARTS IN CHURCH SITS IN HIS OWN PEW. She wore it everywhere and thought it was hysterical. SO, if anyone has lots of gas no matter what you eat, read up on celiac disease. Getting the gluten out of your diet MAY solve the problem, but don’t go gluten-free until after all testing is completed or you may get a false-negative test result.

  4. THanks, GD, as always. I don’t like to publish a lot of personal stuff on fb, but I decided this merited it. We can help ourselves encounter less ignorance toward our disease by spreading information!

  5. Ditto the thanks … will pass this around. I have been trying to get my non-Celiac “friends” to understand that my illness is not just about eating whatever claims to be gluten free and then I am fine. I am rarely “fine” … even though I eat clean food. I indulge every so often on some GF “goodie”, but I know I shouldn’t and my body knows when I do. It really is difficult to be truly GF in this world, especially when you have to take medications for other diseases. Thanks to nobody caring about gluten in medications, it is nearly impossible to get a guarantee that medications are totally gluten free. Unless you are a hermit, take no meds, never, ever eat food cooked by someone else, and have a home that is 100% gluten free, the chances of getting glutened are pretty high … hence the rarely fine.

  6. Thank you for this post and all that you do for this community. It is comforting to me just knowing you are there for us. What I want people to know is that this disease is a monster that gives birth to many beasts. When the beasts attack, they are vicious and have no compassion. Not looking for sympathy; just understanding. The information isn’t out there; just do some research. We celiacs did not ask for this; this is the hand we were dealt, and we are playing for our lives.

  7. Thank you for this post, I just shared it on my facebook timeline and I can’t wait to read more of your blog! I have to advocate for myself and my son, both of us diagnosed not quite two years ago. In addition to the CD, I was diagnosed with Hashimoto’s hypo-thyroidism a few years ago, I wish more had been commonly known about potential connections to CD then.

  8. This is my first Celiac Awareness month since being diagnosed so I decided to share with some of my coworkers what CD is and some of my personal experience with it. A couple of them seemed annoyed, but only 1 person I shared with knew what CD was (she has a daughter in law and 3 grandchildren with CD). I got the “oh, the gluten thing” response from some. I also shared on a couple of web sites comments pages. On Media Matters I got 3 respondents who have CD and thanked me for the post. It’s only a drop in the bucket, but if we all put a drop in the bucket eventually it will be full.

    I’ve been GF for 8 months now and still feel pretty crappy, so started cutting out dairy last week (Damn, but I miss the cheese and I haven’t been able to give up the half and half in my coffee yet). I’m gradually eliminating GF replacement foods and trying to consume more whole foods, but as a hard core foodie it’s been a struggle to change 58 years of eating habits. And I won’t even mention the BEER! OK, I mentioned it, but oh how I miss the darks, the sours, the red ales, the stouts, the Guinness, the Smithwicks…… Sigh! I’ve found 4 palatable GF beers available here in stores, but haven’t found a single restaurant in the greater Sacramento area that carries any GF beers. Clearly, us Celiacs are being discriminated against. There ought to be a law.

    Thanks to the Dude and the community here for the support, humor and info. You all have a grand GF day!

  9. Thank you for everything you do for the Celiac community. I just shared your post on Facebook. I was diagnosed with celiac in 2013, and many people around me still do not understand it. I am so tired of being asked questions like “How serious is your allergy?”….”Can’t you just cheat once in a while?”…..”Why can’t you just take some medicine and get over it?”…. “Did a doctor actually diagnose this?” I still don’t think my supervisor at work believes that I have celiac, even though I’ve told him several times and explained what it is. Mostly he just rolls his eyes and smirks when tell him I have to take a sick day because I have diarrhea, stomach cramps, all-over pain, or a killer headache.

  10. I have recently told several people in my work circle and discovered LOTS of people know someone who has celiac. Everyone calls it celiac’s, but I don’t care what is important is that they care at all. And everyone has the same story: either misdiagnosed for a long time or not at all. We are WAY more than 0.7 percent of the population. Again, the medical profession doesn’t care because we don’t make them any money.

  11. Thank you. Thank you. Thank you.

    It’s tough enough that my son was diagnosed with Celiac. It’s tougher explaining to friends and family who are your support system, that it’s not OCD and that cross contamination is real. We are all gluten free in support, it’s really difficult and I can’t imagine at the age of 12. “Hanging Out” is something that scares me more now than ever. I have joined several groups on Facebook, I feel the need to vent to people who understand. I have friends who tell me everyday how obsessed I am. It’s so frustrating.

  12. I have become a living example of the bizarre way “Sally” ordered all her meals in “When Harry Met Sally”, but I add, “If you don’t follow my instructions exactly, I will become violently ill.” Somehow, those words terrify waiters and cooks alike. I am tired of explaining that “this” is not a food allergy, a popular fad (oh yeah, going gluten-free helped you loose weight…tell the real story…you stopped eating junk food and are eating real food!), or the means to make myself the center of attention! I just want to make it through the day without all the bizarre things that happen to let me know that I have been glutenized (my word for the brutal way gluten destroys my life). I am tired of hearing people say, “A little gluten won’t hurt you.” I usually counter with, “Although what I have is an auto-immune disease, I hope you don’t tell people with an iodine allergy that eating a little shrimp won’t kill them.” In severe cases, gluten has ushered in far worse diseases, and has even caused death. I have other auto-immune diseases that I am also dealing with (Chrohn’s disease & rheumatoid arthritis) that I am sure hitched a ride because of that dreaded “poisonous” gluten. I wouldn’t wish my life on anyone and yet, I have found the challenge to eat and make something good, if not better than whatever is offered as a substitute in the mine field known as the grocery stores that we have to visit once in a while. Keep spreading the word Gluten Dude. We can educate people one at a time…eventually (at least I hope so) people will start taking us seriously.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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