If you’ve been diagnosed with celiac disease, have a family history of chronic illness, and generally feel awful every time you eat bread, it’s safe to say that gluten adds to your fatigue.
But what about if your only symptom is a mild level of fatigue?
Could gluten be the hidden cause of your fatigue?
The simplest answer is: maybe.
If you have a great baseline of health, have no family history of chronic illness, chronic fatigue (or fibromyalgia), and can’t seem to notice any symptoms when you eat gluten, then consuming gluten is likely okay.
This is one end of the spectrum. The other end of the spectrum includes those with celiac disease or severe gluten sensitivities. In these situations, fatigue is almost always a symptom.
For the majority of you, it’s likely that you’ll fall somewhere between the two extremes. This is when it becomes challenging to evaluate whether you or not gluten is causing your fatigue.
Who’s at risk for gluten fatigue?
1-3% of the general population has celiac disease. If you have a first-degree relative (brother, sister, mom, or dad) with celiac disease, the likelihood of you developing celiac disease jumps to 10%. If that’s you, be careful. you’re at increased risk to feel fatigued (and a number of other unwanted symptoms) after eating gluten
Since one set of your genes comes from mom and the other from dad, you can have any one of many, many different gene combinations. Some of these genes predispose you to celiac disease. In fact, 98.4% of those with celiac disease have one of two specific genes. These same genes were found in almost 90% of first-degree relatives as well.
While we know the odds of developing celiac disease, we don’t have enough evidence to determine how that may translate into developing a gluten sensitivity. Preliminary research does seem to indicate there may be other genes that predispose you to gluten intolerance.
One study looked at the link between the genes that cause celiac disease and gluten sensitivities. The researchers found that only 56% of those diagnosed as gluten sensitive carried one of the celiac genes. This indicates that those genes are far less involved in the development of gluten sensitivity than they are in the development of celiac disease. (1)
However, the genes did appear more often in those with gluten sensitivity than they did in the general population. Genes do play a role in gluten sensitivity — it’s just not clear what role that is.
While we may not know the exact risk factors involved in developing gluten sensitivities, there is a lot of information regarding risk factors for developing celiac disease. Genetics is just one piece of that puzzle. It is thought that those who are at risk for developing celiac disease are also likely at a higher risk for developing gluten sensitivities.
- First degree relatives of patients positively diagnosed with celiac disease
- Type 1 diabetes
- Down syndrome
- A short stature
If you have any of the above risk factors, it’s more likely that gluten could be causing some of your symptoms – including fatigue!
In Western countries, the overall prevalence of celiac disease is on the rise. A recent US study showed that the prevalence of celiac disease was only 0.2% in the year 1975, and increased 5-fold during the next 25 years. (4) The reasons for these changes are unclear but the current hypothesis has to do with changes in the quantity and quality of ingested gluten. (5)
While I haven’t come across a lot of research, I have had a number of patients who tolerate gluten just fine while in Europe. But once they return home to North America, gluten seems to trigger a number of their symptoms.
How to actually determine if you react to gluten
Unfortunately, it’s not as simple as getting a celiac screen from your doctor. Not being celiac does not give you free license to consume products containing gluten. A celiac screen tests for celiac disease. Nothing else. It does not tell you whether you have a gluten sensitivity or allergy.
I go into more detail about it in this post.
Let’s assume that you’ve already had a celiac test. It was negative. But you still feel tired after eating gluten. In this case, there are two primary ways of testing for gluten sensitivities.
1. Elimination diet
The elimination diet is the original method of diagnosis. Eliminate gluten and all gluten-related products for a minimum of 30 days. Reintroduce and make note of the effects (or lack thereof). If you notice changes to your digestion, bowel movements, mood, or any other bodily functions, a gluten-free diet will likely serve you well.
The elimination diet is a cost-effective, do-it-yourself style of diagnosis. More often than not, it works.
At the clinic, we’ve developed a three-step method to best help eliminate gluten from your diet. Below I’ll show you how to perform a gluten-free elimination diet.
Step #1 – get used to reading food labels
Some foods, like bread or pasta, obviously contain gluten. Other foods can be more confusing – does salad dressing contain gluten?
Health Canada mandates food manufacturers specify if a product contains wheat or gluten. Please keep in mind that a wheat-free product does not guarantee the product is gluten-free. However, a gluten-free product does ensure it is free from wheat. This warning appears at the end of the ingredients list. Start with the products in your pantry and fridge – you’ll be surprised at how many items you use regularly contain gluten!
Get to know foods that are naturally gluten-free. The obvious gluten-free foods include:
Please note that these foods need to be free from marinades, breading, and other methods of preparation as these coatings are often a hidden source of gluten. Again, read the label to ensure the product is gluten-free. If a packaged food does not explicitly state that it is gluten-free, assume that it contains gluten.
Keeping your food simple is the best way to start out. As you get more adventurous don’t shy away from the gluten-free prepackaged food and mixes. A gluten-free diet has become more mainstream and there is a wide variety of food to choose from in almost every grocery store. Don’t be discouraged if you are turned off by the flavor or texture of one product – there are many options out there; keep trying until you find something you like.
Remember, organic does not equate to gluten-free.
step #2 – identify hidden sources of gluten in your home
As odd as it may seem, your house likely has non-food sources of gluten. Gluten is incredible at helping improve the texture of both foods and household products. In fact, the word gluten comes from Latin where it meant glue. This is exactly what it does to products – it glues them together, creating a smooth, wonderfully textured product. The following household products often contain gluten:
- Lipsticks/lip balms
- Vitamins and supplements
Step #3 – cut out cross-contamination
Imagine you possessed a futuristic technology that enabled you to be able to cut a piece of bread into a million little pieces. It would take between 3-6 of those small little pieces to trigger a reaction in your body. Another way to think of that is 3-6 parts per million.
This is all the gluten required to cause a reaction in celiacs. And I suspect that’s probably all the gluten that’s needed to start making you feel tired. Such a small amount can easily be consumed via cross-contamination.
Cross-contamination occurs on many areas/surfaces that come into contact with gluten. Some of the more common culprits include:
- Cutting boards
- Tupperware containers
My general rule of thumb is that if a surface can be scored with a dull knife, it is a potential source of cross-contamination. Pots and pans are no issue. Nor are forks, knives, and other cutlery. Glass is safe too.
The problem areas are plastics. Tupperware containers, plastic ladles, serving spoons, cutting boards etc. These are the areas where cross-contamination can occur.
Cross-contamination becomes a real issue when part of a family is gluten-free while the other members consume gluten. In these cases, I encourage getting designated gluten-free cutting boards, toasters, Tupperware, etc.
A quick note about the elimination diet
The elimination diet is not a means of diagnosis. It does not confirm or deny an allergy/sensitivity to gluten. The elimination diet is a useful first step in exploring how gluten affects your body. Laboratory testing is the only way to conclusively diagnose a gluten allergy or sensitivity.
Even if your only symptom is fatigue, I would still encourage you to try a gluten-free diet for 30-days. This simple dietary change may be what’s needed to improve your energy levels!
Gluten and autoimmune disease – fatigue may be your only symptom!
For patients with an autoimmune disease (or a family history of autoimmune disease) do not use the elimination diet as a diagnostic measure. You may feel no different whether you include or exclude gluten in your diet because there could be many processes occurring beneath the surface. Sometimes you won’t be able to feel a physical symptom.
Take, for example, the autoimmune disease Multiple Sclerosis (MS). In a normal immune system, the body creates antibodies to attack foreign invaders such as germs. However, the immune systems of people with MS recognize the protective insulation over the nerves (myelin) as a foreign invader and create antibodies to attack it.
Gluten can trigger your body to produce antibodies to myelin. (6, 7) Even if you are extremely diligent in your elimination diet, you won’t be able to feel your body increasing or decreasing the number of antibodies.
A similar process may be occurring for those with chronic fatigue syndrome. Often, chronic fatigue is caused by a number of different processes. Gluten may be only one of the factors contributing to your fatigue.
If there are multiple contributing factors to your fatigue, going gluten-free may not be enough to experience an increase in your energy. In these instances, I encourage you to work with a knowledgeable functional medicine practitioner who can guide you through treatment. Don’t get discouraged if a gluten-free diet doesn’t improve your fatigue!
Is there a test to see if gluten makes you tired?
To best way to determine whether (or not) gluten is causing your fatigue (or, any other health concern) is via laboratory testing. There are many food sensitivity tests on the market and not all are created equal. In fact, at the time of this writing, there is only one lab known to offer a comprehensive test for gluten sensitivity.
Testing is an objective means of determining whether a reaction to gluten exists. Labs will identify if your immune system is reacting to particular foods. In order for a test to be accurate, the food being tested needs to be in your diet for about thirty days before doing the test.
Why is there only one lab that offers comprehensive testing for gluten?
That has to do with grains being composed of much more than just gluten. Gluten is one specific protein in wheat which is the most common form of ingestion. However, wheat is comprised of other proteins – an example being gliadin. For a more exhaustive look at all the proteins and peptides found in wheat, please see this post.
You can react to one or any combination of proteins. As you are a unique individual, the way you react to wheat is likely different than your spouse (8). If testing is to be considered accurate, it has to test a comprehensive array of wheat proteins and peptides.
If your lab results identify a gluten-related sensitivity, then a gluten-free diet is recommended. You can safely assume that yes, gluten is contributing to your fatigue.
What about genetic testing?
Genetic testing does not diagnose celiac disease. Remember, 25-30% of the general population carry the very same genes that are linked to celiac disease. But celiac disease only affects 1-3% of the population. A genetic test merely identifies whether (or not) you have the genes associated with celiac disease. This does not mean you have celiac disease or will go on to develop it later in life.
Genetic testing does indicate whether or not you’re at an increased risk of developing celiac disease or possibly gluten sensitivities. Should you have these genes, the likelihood of gluten being part of the reason you experience fatigue is elevated. If you do genetic testing like 23&me, and learn that you have the HLA DQ2 or DQ8 genes that most celiacs have, I’d encourage you to adopt a gluten-free diet.
I recommend performing genetic testing if one of your first-degree relatives has celiac disease or the genes associated with celiac disease. This is especially important for children as they may not have any symptoms of celiac disease early in life. Genetic testing is also a great option for those already following a gluten-free diet.
Be aware that a celiac screen will only work if you are consuming gluten on a regular basis, but the genetic test will work regardless of whether you’re consuming gluten or not.
Genetic testing is also great if you’ve received a negative gluten sensitivity screen or a celiac screen but feel like your fatigue is improved on a gluten-free diet.
Ok, now you know the genetics and the associated risk factors for developing celiac disease and possibly gluten sensitivity.
The big takeaway:
If fatigue is a debilitating presence in your life, gluten may very well be a contributing factor. And if you noticed no difference in your energy levels after adhering to a gluten-free diet, don’t brush a gluten-free diet off as a fad. There are likely multiple factors contributing to your fatigue. Gluten could still be one of them!
Now, I want to hear from you.
How has gluten affected your energy levels?
Also published on Medium.