Is Gluten Sensitivity Real?
Update, Feb 2021: Since publishing this blog 5 years ago, I’ve recorded a comprehensive podcast episode 142: Gluten Sensitivity & Celiac Disease that goes into greater detail about celiac disease, gluten sensitivity, testing options and more.
(or, how many hip hop references can I cram into a blog post about gluten?)
About a month ago I got SUPER sick. Like can’t-get-out-of-bed sick. The day before I had eaten out at a local spot and as I lay in bed in pain, swollen from top to tail, I realized: oh shoot, I ate gluten yesterday. I did it unintentionally—I have been gluten-free for over 5 years now—which almost made the sting worse.
I felt completely out of control; this wasn’t a choice I made consciously, and the only thing in my power to do was wait it out. The gluten exposure triggered an autoimmune response from my body, and lots of old symptoms flared up: joint pain and swelling, body ache, fatigue, headaches and anxiety. Fortunately, it only took me a week to recover, with the help of some things I’ll be discussing next week.
When I told people what was going on, the overwhelming response was: “oh wow, you actually have an allergy, huh?”
As though I had been faking it for the past half decade…?
It would appear that there’s an underlying current of suspicion when it comes to the authenticity of gluten sensitivity. (This always makes me think of Method Man: Is it real, son? Is it really real son?)
People don’t think gluten intolerance is a real thing. Maybe it’s because of this (hilarious) Jimmy Kimmel video from a a few years ago. Maybe it’s because, like parents, people just don’t understand. Maybe it’s because it’s culturally acceptable to make judgement calls on what others are eating.
A couple of weeks ago I was posted up at a Starbuck’s working on my computer, and I overhead an interview going down. It was a college (won’t say which) food service company looking to hire a cook. During the interview, they joked that around spring break, many of the college girls decide to go gluten-free. The interviewer all but suggested they lie in order to appease the masses. I almost stood up and said something. (I almost did, but then I heard my husband’s voice in the back of my head pleading with me to stay out of it. He’s like my Jiminy Cricket sometimes.)
Evidently people aren’t satisfied until you have a doctor’s note explicitly affirming celiac disease. Then—and only then—is it okay for you to request the gluten-free bread.
If you have a sensitivity to gluten, you know what I’m talking about. (I know you do, because some of you reached out to me to tell me so.) But if you don’t, and you’ve been questioning what all this gluten business is about, then please read the following PSA:
If someone feels better when they’re not eating gluten, it’s okay for them to not eat gluten. They are not high maintenance, nor are they orthorexic, nor are they trying to be trendy, nor are they on a diet. (And if they are…that’s their prerogative).
But maybe they just like feeling good! And maybe their food choices shouldn’t impact you. #mybodymybusiness
Now let’s get on to business…
What is celiac disease?
An autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food, causing serious health problems if undiagnosed.
Do I have celiac disease?
2021 UPDATE:
I have since tested positive for the celiac genes HLA-DQ2 and HLA-DQ8, meaning I do have the genetic susceptibility.
I have tested negative, however, for the tissue transglutaminase 2 antibodies, using the wheat zoomer food sensitivity test. This is explained more on episode 142.
This is a question I get often, and one that makes me uncomfortable. Because “I’m not sure” seems like an inappropriate response coming from a functional nutritionist. But that’s it. I really am not sure. I probably do, but at this point, there’s no way to tell.
What I do know: I used to get sick often. I had “belly aches” all throughout childhood and digestive issues as I moved through my teens years. Depression, anxiety, joint pain, numbness in feet in hands became the norm as I moved into my twenties. These are all symptoms of celiac disease, but CD wasn’t on the map to the extent it is now, so I was never tested. No doctor ever even brought it up to me.
When I was about 25 I got sick again, and ended up in an osteopath’s office. He ran a blood test and told me to stay away from wheat and gluten. I did, and I felt better. I wasn’t perfect—I still wanted bread and pizza and beer, dammit—and quite honestly, I didn’t know how serious a gluten sensitivity could be at that point. But I did know that when I didn’t eat it, I felt better. After about 2 years, I was pretty much full tilt with a gluten-free diet.
Because of this, I can’t test for it.
In order to test for CD, you must have constant exposure to gluten. One “rule” I’ve heard is you must be eating 3 pieces of bread worth of gluten every day for 6 weeks. I can tell you from experience: there’s no way anyone in their right mind would willingly choose this if they already know gluten makes them feel terrible. I sure wouldn’t.
So here’s where I’m left: I don’t know if I have celiac disease. I don’t know if it’s a “true” allergy. I don’t really care. Because I do know how I feel when I eat gluten, and it’s very, very bad. So whether or not it’s a sensitivity or an allergy or an intolerance or an autoimmune disease—what does it matter? I feel better, my life is better, when I don’t eat it.
So, let’s get to it…
Is gluten sensitivity real?
YES, and it’s even acknowledged in the medical community. Also referred to as non-celiac gluten sensitivity, these patients do not test positive for celiac disease, however they DO experience symptoms similar to those of celiac disease, which resolve when gluten is removed from their diet.
HERE’S HOW I FEEL WHEN I EAT GLUTEN
(I share this because it’s a very common list of symptoms)
Joint pain and swelling
Body ache
Fatigue
Brain fog
Depression
Anxiety
Migraines and headaches
Skin issues (eczema, breakouts)
Digestive upset
Because gluten sensitivity is such a chameleon—symptoms are all over the place—it can’t really be diagnosed…YET. But researches are working on biomarkers to develop a test for this condition.
Dr. Alessio Fasano, one of the leading gluten sensitivity researchers in the world, currently based out of Mass General Hospital in Boston, states:
“
All we know is what gluten sensitivity is not. It’s not celiac disease and it’s not wheat allergy. If you have symptoms which you believe are triggered by gluten and you have ruled out celiac disease [via a blood test for certain antibodies confirmed by an intestinal biopsy] and wheat allergy, then you can try a gluten-free diet and see if things improve.
Should you go on a gluten-free diet?
Do you experience any of the above symptoms? Do you have an autoimmune disease? Then try it*.
Remove ALL gluten for a solid 30 days. At the end of the 30 days evaluate: do you feel better? You can test your system by introducing it back in: do you feel worse?
Removing gluten can be tricky, because there are hidden sources of gluten (soy sauce, vinegars, seasonings, lipsticks). It’s not as simple as “just don’t eat bread”.
If you are looking to try this out and would like some hand holding along the way, my Eat to Achieve nutrition program is 100% gluten-free. This could be a great starting point for you.
(And, for the record, all of the recipes on this blog are gluten free.)
BUT HOLD UP...
*If you suspect celiac disease, you may want to get tested for it prior to starting a gluten-free diet.
According the the Celiac Disease Center at Columbia University Medical Center, “anyone who suffers from an unexplained, stubborn illness for several months, should consider celiac disease a possible cause and be properly screened for it.” First-degree relatives (parent, child, sibling) should also be screened since they have a 1 in 10 risk of developing celiac disease.
OTHER CELIAC DISEASE SYMPTOMS TO BE ON THE LOOK FOR:
Unexplained iron-deficiency anemia
Fatigue
Bone or joint pain
Arthritis
Osteoporosis or osteopenia (bone loss)
Liver and biliary tract disorders
Depression or anxiety
Peripheral neuropathy (tingling, numbness or pain in the hands and feet)
Seizures or migraines
Missed menstrual periods
Infertility or recurrent miscarriage
Canker sores inside the mouth
Itchy skin rash
Symptoms of malabsorption, including diarrhea, steatorrhea (pale, foul-smelling, fatty stools), and weight loss or growth failure in children
One way to test for celiac disease—even early celiac—is through the Wheat Zoomer food sensitivity test.
I explain other tests for celiac in Episode 142 of The Funk’tional Nutrition Podcast.
At the end of the day, remember that a gluten-free diet isn’t necessarily some arbitrary decision or trendy diet of the month. For a good lot of people, it’s a medical necessity.
