This post titled, “How Do I Know If I’m Gluten Intolerant?” contains affiliate links. No information in this article should be construed as medical advice. I am not a doctor. Please consult your doctor and/or health care team before implementing a gluten-free diet. Please review my disclosures and disclaimers before reading this article.
I’m often asked, How do I know if I’m gluten intolerant?” It’s an important question and one that you’ll find lots of opinions on depending on who you ask.
In this article, I will attempt to help you answer this question so you can figure out if you’re gluten intolerant once and for all.
For all intents and purposes, I interchangeably use the terms “gluten intolerant” and “gluten sensitivity” as they mean the same thing.
And, just in case you didn’t know, let me also define gluten. Gluten is a protein found in many grains, mostly commonly in wheat, as well as barley, rye and spelt. Gluten gives baked goods their gooey, elastic texture and shape.
What is a Gluten Intolerance?
Before we get into whether or not you have a gluten intolerance, let’s first define it.
A gluten intolerance, or gluten sensitivity, is where the consumption of gluten triggers inflammation in your body, typically at the site of your weakest link.
Dr. Tom O’Bryan, in his pioneering book about autoimmune disease, The Autoimmune Fix, attempts to get to the bottom of what causes autoimmunity. He says it’s all about the gluten, baby. Gluten causes inflammation and inflammation fuels disease.
In fact, he says, “Excessive inflammation pulls on your chain, and wherever the weak link in your health chain is, that’s where the tissue damage will occur.” This is why, as you’ll read below, that a gluten intolerance can present itself in many different ways – not just in your digestive tract. Also, it’s why many people find their joint pain or migraines resolve once they remove gluten from their diets.
While we know that celiac disease, also a gluten disorder, is an autoimmune disease, it isn’t as clear cut if a gluten intolerance should be classified as an autoimmune disease as well.
In fact, a gluten sensitivity is a separate reaction that Dr. O’Bryan says is primarily caused by the innate immune branch. A gluten sensitivity doesn’t wear down the microvilli surrounding the small intestine (as it does with celiac disease patients), rather it creates a chronic state of inflammation in the small intestine instead.
You can read my post, Gluten Sensitivity vs. Celiac Disease, to learn the difference between an innate vs. adaptive immune system response. Briefly, however, people with a gluten intolerance tap into the body’s innate (nonspecific) immune system. Innate immunity is the body’s first defense against foreign invaders that want to attack your cells, such as viruses, bacteria, and parasites. Your innate immunity occurs naturally, as it’s “innate.” In order for a pathogen to attack your cells, it’s going to have to get past your innate immune response first.
On the other hand, people with celiac disease experience an adaptive (or acquired) immune system response to gluten over time. Adaptive immunity is your body’s second line of defense against invaders and is much more complex. Once an invader (gluten) is introduced in the body, the adaptive immune system creates an army of immune cells designed to attack that specific antigen. The immune system remembers those antigens so it can initiate future attacks more efficiently.
Maybe It’s a Wheat Sensitivity?
While most people call their poor reaction to gluten a “gluten sensitivity” or “gluten intolerance,” it may be more appropriately called a “wheat sensitivity.” Someone experiencing chronic symptoms after eating wheat may be responding to one of the many components of wheat, says Dr. O’Bryan in The Autoimmune Fix.
The reaction could be to the entire wheat molecule (not just the gluten, which is the protein), or it could be a reaction to the lectins in wheat, or a sensitivity to a family of carbohydrates called FODMAPS. FODMAPS have been directly attributed to symptoms such as bloating, gas, constipation and diarrhea.
Chemicals found in wheat called benzodiazepines also can contribute to this reaction. This is why many researchers refer to a gluten intolerance more technically as a “non-celiac wheat sensitivity” or NCWS. In other words, a gluten sensitivity or gluten intolerance would fall under the NCWS umbrella.
Signs You Might be Gluten Intolerant
If you think you might be gluten intolerant, but you’re not sure, chances are you’re experiencing any or many of these common symptoms. You can read more about these symptoms, as well as link to research about each condition, in this article, 10 Gluten Sensitivity Symptoms.
Briefly, common symptoms associated with a gluten intolerance include:
- Gastrointestinal disorders such as bloating, gas, constipation, diarrhea, etc.
- Energy issues, such as anemia, chronic fatigue, low iron, weakness, feelings of low blood sugar, etc. A wonky thyroid can also be tied to energy issues.
- Skin conditions, such as dermatitis herpetiformis, keratosis pilaris, acne, eczema, and psoriasis.
- Mental disorders such as depression, dramatic mood swings, ADHD, anxiety and autism.
- Oral conditions, such as mouth sores, cavities, canker sores and geographic tongue.
- Fertility issues, such as infertility, irregular menstrual cycles and premature births.
- Migraines and recurrent headaches also can be a sign of a gluten intolerance.
- Joint pain, such as stiffness and arthritis.
- Delayed puberty, or failure to thrive and short stature in children.
While the research is fledgling, there are studies and much anecdotal evidence that indicates a gluten intolerance can be tied to many chronic conditions. Please read my article, 10 Symptoms of a Gluten Sensitivity to learn more about each symptom.
One VERY IMPORTANT point to note: There isn’t a lot of research on gluten disorders beyond celiac disease. Just because the research isn’t there (yet), doesn’t mean it’s not a real disorder (don’t let anyone – even your doctor – tell you otherwise).
Unfortunately, research is slow to catch up to the information crowdsourced by people who have successfully implemented a gluten-free diet and found symptom resolution. I believe research is slow because individuals manage this disorder via diet vs. a pharmaceutical drug. The skeptical me realizes there’s no money in researching something you can’t create a pill for profit for, right?
The Risks of Unmanaged Gluten Intolerance
Someone with celiac disease is quick to adopt a strict gluten-free lifestyle, currently the only treatment option. However, someone diagnosed with or suspects they have a gluten intolerance, they may be more prone to “cheating” on their gluten-free diet. A little won’t hurt, right? (Read: Don’t Cheat On Your Gluten-Free Diet.)
In a study in the Journal of the American Medical Association (JAMA), researchers examined the intestinal linings of 351,000 individuals and classified each of the subjects either as someone (1) on the celiac spectrum, (2) with celiac disease, (3) early stages of celiac development, and (4) those who did not have celiac but had a gluten sensitivity. Researchers found that those with celiac disease had a 39 percent increased risk of early mortality while those with just gut inflammation due to a gluten sensitivity had a 72 percent increased risk of early mortality. In other words, you’re more likely to die early due to a gluten sensitivity than celiac disease!
A gluten sensitivity is a serious disorder and if unmanaged, can have dire consequences.
These studies – and other research – suggest that a gluten intolerance may be exactly what initiates autoimmune diseases. The longer the exposure to gluten, the more likely you’ll progress along the autoimmune spectrum and the sooner your gluten intolerance will turn into a full-fledged autoimmune disease.
How to Get [Properly] Diagnosed with a Gluten Intolerance
Diagnosing someone with a gluten intolerance is challenging, and there seems to be no consensus on how to do it. The research isn’t there… yet, but don’t mistake “non-existent” research with a “non-existent” disorder. This is what some “just the facts, ma’am” people will have you believe – if the research doesn’t it exist, it’s a fake disease. You know those people I’m talking about. Chances are one of them is trying to tell you this gluten thing is just a bunch of hooey. You know otherwise, right?
When doctors test for celiac disease, they first conduct a simple blood test, which is highly accurate. Then, they conduct an endoscopy procedure where they biopsy and examine the small intestine. Doctors look for total villous atrophy or flattened villi, which are the hair-like follicles surrounding the small intestine. If a doctor doesn’t find total villous atrophy, they tell their patients, “You don’t have celiac disease.”
Just because a patient’s endoscopy comes back normal (no villous atrophy) doesn’t mean it’s okay for that patient to continue to eat wheat. In fact, remember, the risk of early mortality is higher in those who are sensitive to gluten vs. those with full-blown celiac disease, probably because those with just a sensitivity continue to eat wheat!
If you experience any of the gluten sensitivity symptoms noted above, talk with your doctor about getting tested for a gluten disorder.
There are diagnostic tools available to help you determine if you have a gluten intolerance. Most labs in the U.S. tests for one component of poorly digested gluten known as alpha-gliadin, yet there are more than 62 different peptides of gluten that can cause an autoimmune reaction. You want to look for a test that screens for more than just one peptide if at all possible.
Cyrex Labs has developed a test that screens for 10 different peptides (the most science is able to identify via lab work) to help someone better understand if they have a gluten sensitivity. Talk to your doctor about ordering the Cyrex Array 3 tests or learn how you can order it directly on this website.
Unfortunately, I hear about patients’ struggles to get the test they need. Some can’t afford the Cyrex Array 3 test without insurance. Others say they are “talked into” taking the standard test that only tests for one peptide, a test that comes back negative 50 percent of the time despite someone having a gluten sensitivity.
What If the Tests Don’t Work for You?
If the tests don’t work for you, it may be time to take matters into your own hands. You may want to implement an elimination diet. An elimination diet is where you remove gluten from your diet for 4-6 weeks, then reintroduce it and see how you feel. You must remove gluten fully from your diet – 100 percent – not even a crumb.
For some people, the impact of reintroducing gluten will be sudden. They may feel flu-like symptoms, or their joint pain or stomach aches will come back immediately. For others, symptoms, if resolved by the gluten-free diet, may reemerge slowly or show up on an abnormal thyroid test later in the year, for example.
If eliminating and reintroducing gluten doesn’t resolve anything, perhaps it’s time to consider that there is something more at play here than just gluten. Talk to your doctor, and even consider getting a second opinion from a functional medicine doctor. It can’t hurt to have multiple doctors from multiple fields of study working FOR you to help you resolve your chronic inflammation.
Regardless, be sure to work with a trained nutrition professional to aid you in your elimination diet and to ensure you’re getting proper nutrition. You may also want to read up on whether or not you have a candida or SIBO, another disorder that can mimic symptoms of a gluten sensitivity.
Gluten Disorders Are Not Fad Diets
Before I conclude this article, I want to take a moment to talk a little bit about fad diets, as people seem to think the gluten-free diet is just a short lived, jump-on-the-bandwagon kinda diet.
While fad diets come and go, I assure you, the gluten-diet is here to stay. It’s no fad. Fad diets help someone lose weight fast, however, celiac disease, wheat sensitivities and gluten intolerances are REAL medical conditions. The gluten-free diet is not a get-skinny-fast diet. Far from it.
Once you’ve identified gluten as the food that is causing havoc in your body, removing it will allow your immune system to recover and your body to heal. Dr. O’Bryan says in The Autoimmune Fix, “There is no condition that may not be helped by removing the offending foods, thus calming down an inflammatory cascade.”
Usually, after eating gluten, the gut is able to heal itself; however when someone has celiac disease or a gluten intolerance, and after continued consumption of wheat (the average person in the U.S. eat 131 pounds of wheat per year (according to 2017 data), the damage to the gut does not heal itself and the gut begins to “leak.”
Overall, eliminating gluten can’t hurt. It truly may be the last resort to figuring out if you have a gluten intolerance, at least until better research and diagnostic tools become available.
BEFORE implementing a gluten-free diet, please get tested for celiac disease. It is essential that you “rule out” celiac disease before eliminating gluten from your diet as you must be eating gluten in order for a celiac disease test to be accurate.
Learn more about celiac disease testing in this post, How to Get Tested for Celiac Disease. I discuss the process, in-depth, as well as share with you more about a highly accurate at-home celiac disease test you can take on your own terms – no doctor visit required.
Not convinced that you should rule out celiac disease first? Please read my article, STOP! Don’t Go Gluten-Free Until You Read This!. Also, my article, Should You Take the Gluten Challenge?, will explain what to do if you’ve already eliminated gluten but want to get tested for celiac disease and/or a gluten sensitivity.