I wrote the following as a comment on another blog after someone said they couldn’t wait for the gluten free fad diet to go away. Usually I ignore those comments. This time, for whatever reason, I didn’t. The words poured out and I decided to edit it and post it on my blog. So without further ado, here is my response to those who believe the gluten free diet is just another fad diet.
Okay, that’s going to prompt me to pull out my soapbox. I have to confess, I have mixed feelings about the current faddish aspect of the gluten-free diet. On the one hand, it’s educated the broader population. A lot more people now at least know what gluten is. That makes it much easier for me to explain what I can and can’t eat. Restaurants have become a lot more sensitive and knowledgeable about food allergies, sensitivities, and intolerances in general and gluten specifically. (Even though what I have isn’t an allergy, the treatment is the same as that for an allergy.) And it’s now a lot easier than it was to identify a gluten-free food product with confidence. (Part of that is also a result of the labeling regulations the FDA has developed.)
With that said, it has also led to a widespread dismissive attitude by people who treat it like just another fad diet. Mostly I ignore it, but the stories of restaurant chefs and servers who deliberately contaminate food because they are irritated about this “fad”, though thankfully uncommon, are always in the back of my head any time we eat out. Even when someone isn’t malicious, they can still be careless if they think it’s just a fad. We’re very selective in the restaurants in the area that we know and trust, but there is always that first time you try a restaurant that isn’t already on your list. There have been times I simply haven’t eaten the food because something about the food or the service set off warning bells. ( I don’t make a scene based on a gut feeling, but I don’t like that I have to worry about it.)
Fundamentally, the gluten free diet is emphatically not a fad; it’s a medical diet. Nobody would dismiss a diabetic diet as a fad even if, for some reason, it gained a faddish quality among some people who did not have diabetes.
Celiac disease is at the top of the list of medical conditions that are treated with a gluten free diet. Celiac disease remains widely misunderstood by the general population, even when they’ve heard of it. It’s not an allergy or food intolerance. Nor is it limited to GI symptoms.
Rather, celiac disease is an autoimmune disease like lupus, type 1 diabetes, and a number of other pretty serious diseases. When a person has an autoimmune disease, their body produces auto-antibodies that attack itself rather than an invading pathogen. Unlike all the rest of the autoimmune diseases, we actually know what triggers the autoimmune response for those of us with celiac disease — consuming gluten. In a way, I consider myself fortunate. At least I have a chronic, incurable disease that I can keep in complete remission simply by maintaining a strict medical diet. People who have lupus, for example, aren’t so fortunate. All they can really do is try to treat the symptoms and keep it under control, but they are never symptom-free. And none of the medication is free of side effects. And if the first medicine used becomes ineffective, the next one is actually a chemotherapy drug. Similarly, I’ve known a number of people with type 1 diabetes. They have to follow a fairly strict medical diet, watch their blood sugar, and give themselves insulin shots. And their disease is never in remission or fully controlled.
A lot of studies have been done over the past decade or so, including a controlled study here in the US that tested something like 13,000 people in the general population across the country. So we know the rate of celiac disease. In the US, roughly 1% of the population has active celiac disease. That’s roughly the same rate as type 1 diabetes, making those two diseases by far the most common autoimmune diseases. Unfortunately, nearly 90% of those with active celiac disease remain undiagnosed. Moreover, other studies have shown that the rate of celiac disease in the general population has been increasing for decades and is still increasing. (They tested blood samples going back to the 50s and discovered active celiac disease back then had about a quarter of the rate it currently does.)
And that’s because celiac disease can be largely asymptomatic for years as it creates long-term damage. Or its symptoms can seem unconnected to each other and and can range across all the bodily systems. Since even most doctors still associate it exclusively with GI symptoms, if someone doesn’t present with those symptoms, they never consider celiac disease. In reality, celiac disease has over 300 potential symptoms ranging from the classical GI symptoms to neurological to diseases related to nutritional deficiencies and many more. The list is mind-boggling. Over the long-term, it can trigger other autoimmune diseases. It can cause depression. It can trigger ADHD or make it worse. Active celiac disease can even lead to cancer.
The presenting symptom for me when I was finally diagnosed was iron deficient anemia. However, I was then discovered to have osteoporosis in my spine (now almost completely returned to normal). I discovered the “aches and pains” I thought were just part of growing older largely went away. They were apparently the result of systemic inflammation. I was suffering from depression, which is now completely gone. I had mild neuropathy and “brain fog” now also gone. I was an extremely advanced case when I was finally diagnosed and even after almost five years, my body is still healing.
Active celiac disease will kill you. (Studies have shown it significantly reduces longevity.) And it will do so slowly and with significant suffering.
There is a strong genetic component to celiac disease. If you don’t have certain genes, it’s extremely unlikely you’ll ever develop celiac. As a result, though, that means that family members, especially first degree relatives, of someone with celiac disease are much more likely to have or develop active celiac disease than the general population. So after I was diagnosed, I let all my family members know, including my older children. (Unfortunately, except for my older son, I don’t think any of them have actually gotten tested.) My two younger children were both still minors at the time, so we had them tested as a precaution. We were shocked to discover they both had full-blown celiac disease. They were completely asymptomatic. Fortunately, unlike me, we caught it early with them. So they’ll never suffer the extensive systemic damage I did.
However, the diet is extremely strict. I forget the exact threshold, but something like 20-50 milligrams of gluten in a day will trigger a full-blown autoimmune response. (Yes, they’ve studied that as well.) And even smaller levels can trigger some autoimmune reaction. As a result, we talk about gluten as “parts per million” in any given food we consume to avoid reaching the very small daily thresholds. 20 parts per million is the threshold used in the FDA regulations, if I recall correctly. (Mostly I think that’s because we don’t have a test that will reliably detect lower levels of gluten.) But that means that food that has been fried in the same oil as flour battered items or has otherwise been in contact with a gluten-containing food is typically not safe for us to eat.
Moreover, once triggered by exposure, the autoimmune response can take weeks to completely subside and for the disease to return to full remission. (Generally, the acute symptoms from an exposure, if any, subside in a matter of days, but the autoimmune response itself takes much more time.) I recall another case study of a nun who strictly adhered to the gluten free diet except for weekly communion with only a small piece of the eucharistic wafer. Her celiac disease remained fully active even from that small weekly exposure. (I will note that both the Catholic and Orthodox churches hold that communion with either bread or wine alone remains the fullness of communion and can commune those with celiac disease with wine only.)
The doctors who research celiac disease are trying to get it added to the regular screening process like diabetes and cholesterol. Given that around 3 million people in the US have active celiac disease and roughly 2.7 million of them remain undiagnosed and since the disease can activate at any age, that seems reasonable. It’s especially reasonable since it’s so hard to diagnose from the symptoms and can even be largely asymptomatic for years as it damages the body. Moreover, they now have a blood test that is highly accurate and specific, so it’s relatively easy to screen. But the medical community generally moves pretty slowly on such things. Hopefully we’ll get there.
I’ll put the soapbox away now. But please, even though there is presently a faddish quality to the gluten free diet, don’t dismiss it as simply another fad diet. It isn’t. It’s a life-saving necessity for those of us with celiac disease.