To Everyone in the Gluten Free Community,
If you have Celiac Disease or gluten sensitivity (or suspect that gluten adversely affects your health in some way), this letter is to you.
It's Celiac Awareness Month, and I wanted to interrupt the series of blog posts and GF-friendly restaurant gift card giveaways we've been running this month to address something that has generated a visceral response within our community.
Discussions in the gluten free community seem to really be heating up over the issue of gluten sensitivity versus Celiac -- and the host of issues raised by these two similar, yet distinct, conditions. Even innocuous posts on social media pages can elicit a firestorm of responses from both Celiac and gluten sensitive individuals, who seem to be "taking sides," for lack of a better phrase over issues such as whether someone who suspects gluten is affecting their health should first be tested for Celiac, whether "gluten sensitivity" even exists, and whether some individuals choosing to go gluten free are doing more harm than good (for their health, and for the GF community in general).
My own family is affected by Celiac (my younger son was diagnosed over 9 years ago, right before he turned two, and my mother-in-law was diagnosed shortly thereafter). So while I can't say we're affected by gluten sensitivity, I do believe it is a "real" condition. For anyone who doesn't believe gluten sensitivity is a true condition -- separate from Celiac Disease but just as disruptive to the body -- I'd suggest reading Dr. Alessio Fasano's new book, Gluten Freedom. He was instrumental in distinguishing gluten sensitivity from Celiac several years ago. In his book, he discusses the differences between the two conditions and how researchers, including himself, are trying to figure out an accurate diagnostic test for gluten sensitivity.
People who are gluten sensitive can present with identical symptoms to someone with Celiac (bloating, abdominal discomfort or pain, constipation, diarrhea...to name just a few of the 250 reported symptoms). However, they don't produce the antibodies to gluten, and biopsy results do not show flattened villi in the intestines. This does not mean their symptoms aren't real or "all in their head," however (again, I refer you to Dr. Fasano, arguably the world's leading expert on Celiac and gluten sensitivity).
With gluten sensitivity, the current method of diagnosis is one of elimination -- ruling out Celiac Disease first and then ruling out wheat allergy. If both of these tests are done correctly -- and come back negative -- a gluten free diet should be tried. If the person's symptoms disappear on a gluten free diet, they are then diagnosed with gluten sensitivity. Despite how "unscientific" this might sound, it's currently the approach favored by experts, and I'd challenge anyone disputing "gluten sensitivity" as a real medical diagnosis to spend some time reading up on the subject before railing against those following a gluten free diet.
The question -- and so much of the current debate -- seems to be centered around whether someone suffering from symptoms associated with eating gluten should first find a good gastroenterologist and be properly tested for Celiac or whether it's often better to "try out" the gluten free diet first. Upon recently posting an article on my website's Facebook page about how many people with gluten sensitivity haven't had proper tests (mind you, I didn't write the article, I was just sharing it), one person commented that her doctor didn't see the point of getting tested for Celiac, and ultimately, if he tested her (and assuming her celiac test came back positive), he'd just tell her not to eat gluten anyway.
This is when I realized that we, as a community, have a lot of work to do. I've started to see all sorts of similar, and increasingly heated, discussions on topics of this nature...almost on a daily basis. And they aren't always the gluten free community bickering with "outsiders." It's within our own community! I feel we aren't on the same page -- or evern reading the same book. There's so much misinformation out there, and the continued lack of awareness even within the medical community doesn't help. My mother-in-law had the same problem 9 years ago when she asked to be tested for Celiac. Her doctor refused...said she didn't have the textbook symptoms. And this still happens today -- even in the case of the aforementioned Facebook commenter whose doctor "didn't see the point" in testing.
What often ends up happening is that people "self diagnose" (for a variety of reasons, including lack of knowledge or support from a doctor) and decide to go gluten free. The problem is...unless they thoroughly educate themselves on all the possible hidden sources of gluten, gluten can easily sneak into their diet. And even if they're following the diet to a "t" and feel great, at that point there will be little incentive to ever go back to eating gluten in order to get an accurate read on a test for Celiac.
Why is this important?
Believe me when I say that if it were me -- or anyone in my family -- I wouldn't want to go back to eating gluten "just to get a Celiac test," either, if I'd been gluten free and feeling great for months or years. But the issue is that there is a difference between Celiac and gluten sensitivity, and it's an important one, so it's a good idea to undergo the proper testing if you can (I realize there will always be times when this just isn't possible or practical.) The symptoms of gluten sensitivity can be just as debilitating as the symptoms of Celiac, but with Celiac, the body produces antibodies to gluten and mounts an attack on the digestive system, flattening the villi in the small intestines that absorb nutrients from food. So you can't cheat. Ever. Period. The only treatment is to follow a gluten free diet for life.
Someone with gluten sensitivity, on the other hand, will be miserable after ingesting gluten, but they do not have the internal damage to their digestive system that someone with Celiac has (however, I'm told they can have more extra-intestinal and neurological effects). And there's some debate about whether they need to show quite the same level of vigilance when it comes to cross contamination or a "crumb" sneaking into their diet. Though they won't ever want to knowingly "cheat," they may not have to take the same precautions in preparing their own food or dining out as someone with Celiac has to take. It probably depends on just how sensitive they are. (With Celiac, on the other hand, even if small bits of gluten don't cause noticeable symptoms, they do damage the intestines.) The point is, it's important to know whether one has Celiac or gluten sensitivity, because they are two very distinct conditions. Furthermore, there's still plenty we don't know about what's currently being called "gluten sensitivity." Some experts even believe it may be another component of wheat, not necessarily the gluten, that causes symptoms in these people.
And this is important because we all need to acknowledge the two distinct conditons (Celiac and gluten sensitivity). Regardless of which one we have, we need to be respectful of each other's needs and "on the same page" in presenting a united front to doctors, the public, restauranteurs, schools, etc.
Because it essentially comes down to this...whether Celiac or gluten sentitive, gluten makes us sick. Very sick. It isn't fun, and it's not in our heads. And avoiding gluten is not a choice we have. For those people who do choose to go gluten free for other reasons (like for weight loss or generally "feeling better"), just be sure you respect the fact that for most people following gluten free diets, it's not a choice. Therefore, please do what you can not to diminish or trivialize the diet. Be careful how you promote the diet, and what you're saying about it. And please realize that many gluten free "substitutes" (like GF breads, cookies, and cakes) will certainly do nothing to help you lose weight, as they typically contain more fat and sugar than their gluten-free counterparts.
What We Can -- And Should -- Be Doing, Together
What I'd like to see the gluten free community do (and note that I'm not referring to only the Celiac community) is to continue our drive to educate and advocate. This begins by taking the time to read the latest research on Celiac and gluten sensitivity (again, I recommend the book Gluten Freedom, by Dr. Fasano) so that you can accurately educate others. And by others I mean uninformed or resistant doctors, skeptical family members, friends who question your dietary choices, and restaurant managers or servers who may give you the eye-roll or the brush-off.
While many in the gluten free community embrace the publicity certain gluten free celebrities have brought to "our cause," this "help" is no help at all if it results in our conditions -- both Celiac and gluten sensitivity -- not being taken seriously. These are medically necessary diets for us, and that bears repeating -- and repeating again -- until many of the misconceptions and percpetions of the gluten free diet being an unnecessary "fad" are a distant memory.
So, please, let's all band together on this one and be respectful in communicating with each other on this very important and sensitive topic. Let's support the hard work of all the national associations that dedicate themselves to the gluten free community -- the National Foundation for Celiac Awarenss, the Celiac Support Association, the Celiac Disease Foundation, and the Gluten Intolerance Group. We are truly all in this together, as we continue to learn more about gluten, how it affects different people in different ways, and We truly are all fighting for the same thing, aren't we? An improved quality of life for ourselves and our loved ones...and progress in getting the remaining 2.5 million people with undiagnosed Celiac properly diagnosed and on the road to better health.
Publisher, Gluten Free Travel Blog
Associate Editor, Simply Gluten Free magazine
Proud Mother to a Celiac son diagnosed in 2005