To start, before the haters come to comment away, this post is not about doubting your sensitivity to gluten. This post is all about nomenclature. No, you don’t have a gluten allergy. Why? Because that’s not a thing. Not a thing that has been proven by science by that name, that is.
There are several things that you might have instead. A true wheat allergy. Celiac disease. Or you might have non celiac gluten intolerance (or what they’re calling non celiac wheat intolerance). It’s confusing, I know, but it’s what you say that matters. Because there are people who think that anyone with an issue with gluten is a special snowflake. And if you have one of these three issues, you can prove that, while you might be special and adorable like a snowflake, you’re definitely not making it up for attention, because these three conditions have science behind them.
Here’s the nomenclature of the three conditions that you can have, scientifically recognized, related to gluten. Of course, none of these should be diagnosed on your own, and requires proper testing by a real medical doctor. Side note: please, don’t get diagnosed by muscle testing because that’s not a thing either.
- A True Wheat Allergy. This is an IgE test to wheat. It’s a blood test, like blood tests that can test for a milk allergy, peanut allergy, etc. You can learn more about food allergies on the American College of Allergy, Asthma and Immunology and the Food Allergy Research and Education. If it comes back positive, and you react to foods containing wheat (not barley, not rye, but wheat itself), then you probably have a wheat allergy. You can become anaphylactic to wheat with an IgE allergy and you should consider following up with an allergist and get epinephrine injectors (like an EpiPen, AuviQ, or other auto-injector). Always carry two injectors with you at all time if you have a wheat allergy that could lead to anaphylaxis. If you have a wheat allergy and not another condition, you could technically eat gluten – found in barley products (like Rice Krispies) and rye products that do not contain wheat.
- Celiac disease. Celiac disease is a lifelong genetic autoimmune disease. You can learn more about celiac disease at the Celiac Disease Foundation, Gluten Intolerance Group, and Beyond Celiac – three US non-profits dedicated to life gluten-free. Celiac is brought on by consuming gluten along with another trigger – some are brought on by surgery, pregnancy, or a common stomach bug. It’s not an allergy, you will not have an anaphylaxis reaction when gluten is consumed** (Please note, there are over 300 symptoms of celiac disease in reaction to wheat, so there is no “typical” reaction that one might have to gluten as a celiac. The typical symptoms are digestive related, primarily in children, but adults can present with a myriad of symptoms.) Celiac disease can be determined by three tests – a blood test, an endoscopy and genetic disease. The blood test, that must be done while eating gluten, is just a screener. If antibodies are found (head to celiac.org to find the proper tests you should request if your doctor is unfamiliar), then you can proceed to the next step – an upper endoscopy. Again, this endoscopy must be done while eating gluten. The endoscopy can confirm if there is villi damage from the gluten. Between the blood test and endoscopy, a celiac disease diagnosis can be made. However, if both tests are equivocal, or if you refuse to take the blood test or endoscopy while eating gluten, you can take a genetic test. This test is a blood test that can confirm if you have the celiac genes. If you do not have the genes for celiac, you cannot have celiac disease.
- Non Celiac Gluten Sensitivity/Non Celiac Wheat Sensitivity/Non Celiac Gluten Intolerance/Gluten Intolerance is a diagnosis by exclusion. If you do not have a wheat allergy, or celiac disease (via test), then you might still have a sensitivity to gluten. However, doctors are still seeking out the mechanisms in your body that causes a sensitivity to a certain protein in food. At Digestive Disease Week 2016, they remarked that they have found a biomarker in some that reacts to wheat – and thus they may think it’s Non Celiac Wheat Sensitivity, instead of an issue with gluten. There is much still to be found out about this condition, but it’s real, and we’re still trying to figure it all out. You can’t rush out and get a test for NCGS/NCWS, etc. but I do believe that eventually there will be a mass-market way to test for this sensitivity to gluten (not an allergy).
While we might throw around the term “allergy” at restaurants, it’s always important to use proper terminology, because these conditions are three separate conditions with separate issues attached to them. Those with a wheat allergy need to carry epinephrine. Those with celiac need a follow-up biopsy a year after a strict gluten-free diet, need follow up nutritional and bone density testing, and need relatives to get tested for celiac as well. Non celiac gluten/wheat sensitivity does not include these follow up protocols.
If you feel like you’re having a problem with wheat or gluten, please get tested immediately for a wheat allergy (blood test IgE) and celiac disease (blood test and endoscopy while still eating gluten). If none of those come back positive, work with a gastroenterologist and/or dietitian to confirm non celiac wheat intolerance, and that it’s not something with FODMAPs, SIBO, EPI, IBS, IBD or other gastrointestinal issue that needs to be found before assuming it’s something that it might not be.