A little over a month ago, I was officially diagnosed with Celiac Disease. Since then, I have been inundating myself with research and absorbing as much information about it as possible. It is rather good timing, because May just so happens to be Celiac Disease Awareness Month. While I’ve done my homework, I realize how little other people know, so I thought I would do some sharing. Here are the top 5 things I’ve learned so far:
- Celiacs (or glutards, as I like to call us) are highly misunderstood.
- People do not understand what gluten is, and that it’s in almost EVERYTHING.
- There is a huge difference between a wheat allergy, a gluten intolerance, and Celiac Disease.
- Celiac Disease is serious business and should not be taken lightly. We are NOT trying to be drama queens.
- Cross contamination is a MAJOR issue.
Whenever I say that I have Celiac Disease, the response is usually a blank stare, then the question “what’s that?” (sometimes accompanied by a step back, as if breathing the same air as me will somehow infect them with whatever contagion I have). However, once I say that CD is a gluten intolerance, I see people’s eyes widen in understanding, I hear a big “oohhhhh” and then they usually proceed to tell me everything they know about a “gluten allergy”, which automatically makes me want to smack them. The number one frustrating thing for me is that people do not understand what CD truly is. It is NOT an allergy. To understand the difference, it helps to know a little about how the immune system works…so let’s break this thing down...
The main job of the immune system is to rid the body of foreign substances that might be harmful. When a substance the body doesn’t recognize (dander, pollen, foods, insect venom) is introduced, the innate immune system kicks in to take care of the problem. This is a perfectly normal and correct response, however, the immune system can sometimes “over-react” to the substance and produce uncomfortable symptoms (like wheezing, stuffiness, and sneezing). These are temporary symptoms that have no long term damage (unless the allergy is so severe that it produces a fatal anaphylactic reaction).
Having an allergy to wheat does not mean you can’t have gluten. To understand that, you have to know what gluten is. Gluten, which comes from the Latin word for “glue”, is a protein composite found in foods processed from different grain species – like wheat, barley, and rye (there are many others but those are the well known ones). Since gluten is found in more than one grain, people who have a wheat allergy are still able to ingest gluten from barley or rye, but if you have a gluten intolerance, you cannot have any of the grains it is found in. Make sense?
Since gluten is basically a building block for protein, it is found in other places besides food – like cosmetics and hair products. It’s also used as a stabilizing agent and is therefore found in unexpected foods like imitation meats, soy sauce, ice cream, and ketchup. There are also a lot of hidden ingredients that contain gluten, like “modified food starch”, “natural flavor”, and “caramel color”, which make finding safe foods to eat a nightmare. Now when I go grocery shopping, I have to pore over ingredient labels with a magnifying glass for 10 minutes while people are staring at me like I’m some kind of crazy diet/calorie-counting freak, before I deem anything safe to put in my body.
So if it’s not an allergy, what is a gluten intolerance? This is when the immune system malfunctions and mistakes the body’s normal tissues as a foreign substance. This activates a different branch of the immune system, and is called an “autoimmune” response. This causes the production of anti-bodies, which attack the body’s healthy tissue. This is what happens in other autoimmune disorders as well, like multiple sclerosis or lupus.
This kind of response causes a wide spectrum of much more damaging symptoms, which have a range of severity. Celiac Disease is on the extreme end of this spectrum, making it the worst form of a gluten intolerance. This means you can have an intolerance to gluten without having Celiac Disease.
So, what sets apart CD besides the expected uncomfortable GI symptoms? In this case, the healthy tissue being attacked is the “villi” – the finger-like structures in your small intestine that help absorb nutrients and digest your food. With CD, these are worn down to nubs. As the condition worsens, barriers between the intestinal wall and the rest of your body also break down, causing something known as “leaky gut syndrome”. If you need more explanation than that as to why CD is a serious health risk, here are some reasons: If untreated, it can activate a type of white blood cell called the “T lymphocyte”, which puts carriers at risk to develop gastrointestinal lymphomas. People with CD are also at risk for long-term health effects like malnutrition, anemia, osteoporosis, infertility, and cancer. People with one autoimmune disorder are also at higher risk for others.
Knowing all that, I don’t feel so bad when I act like a paranoid lunatic when grocery shopping or giving my order at a restaurant. Yes, sometimes I feel like I’m being annoying when I ask places to change their gloves and use clean utensils, but I’d rather be safe than sorry. The other reason to be so paranoid is how sensitive a condition CD truly is. Most glutards are sensitive to less than 20ppm (parts per million). You can be contaminated by simply inhaling flour in the air or ingesting a single crumb. This has been particularly frustrating trying to explain to people. When I say I can’t eat a sandwich because of the bread, their first response is “then just take the bread off and eat it!” After explaining I can’t eat it if the bread has even touched anything else, I get a lot of skeptical looks and rolled eyes. However, the risks of cross-contamination are that serious, and they are everywhere. Here’s a few more things you probably didn’t think we’d have to worry about, but do – using different cutting boards, throwing away Tupperware that’s been scratched, grilling on the BBQ.
I’d say the other big misunderstanding (especially for people diagnosed later in life), is why it's so important to adhere to this strict diet, after not having to do so for so long. When rejecting the temptations to eat/drink something that’s being offered to me, I often hear the phrase “you’ve been doing it for 30 years and you’ve been fine, it’s not gonna kill you to take one bite/sip.” Apparently the fact that I haven’t ever been deathly ill in the hospital from eating gluten means people think I’m exaggerating when I say that ingesting it poses a serious threat to my well-being. Here’s the thing – just because I’ve been going about business like normal my whole life, doesn’t mean my body hasn’t been wreaking havoc on the inside. For probably the last 10 years, I’ve felt pretty miserable after every time I ate. But you make excuses to justify it – “it’s just indigestion”, “I have a sensitive stomach”, “it’s probably acid reflux”, “maybe I have IBS”…and you keep writing it off. And once you’ve lived with something long enough, you get used to it, and you no longer even realize how bad you actually feel because you don’t know what good feels like anymore. I regret waiting so long to go to a GI doctor and request being tested. I wonder how much damage I’ve inflicted upon my poor body without realizing it, and how much healthier I could be today if I had known.
Hopefully this has helped open your eyes a bit as to the struggles that someone with Celiac Disease deals with. Especially if you know someone with it! So when you’re eating out and she tells the waiter to ask the chef ONE more time if their chicken stock is gluten-free, don’t be embarrassed. Or if she refuses to eat something you offer because it doesn’t have an ingredient label she can read for herself, don’t call her stubborn. Just be patient, and be proud of us for taking responsibility for our own health. And surprise us with delicious gluten-free chocolate-chip cookies every now and then. :-)
By the way, here are some excellent resources if you want to learn more:
P.S. Atleast Ryan understands...
