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Validation for Non-Celiac Gluten Sensitivity

Is Gluten Really the Culprit We’ve Made it Out to Be?

Key Takeaways:

  • Gluten sensitivity symptoms are highly variable between individuals and include issues like stool changes, gas, bloating, headaches, brain fog, and mood issues.
  • Gluten sensitivity only affects up to 6% of the population and is far less prevalent than commonly perceived.
  • Going gluten-free is not necessary for everyone, especially those with no health symptoms.
  • Gluten sensitivity is vulnerable to misdiagnosis (which is done through gluten elimination and a reintroduction challenge).
  • FODMAP, histamine, and lactose intolerance are more common and can mimic a gluten sensitivity, as can gut infections and bacterial overgrowth.
  • If a gluten-free diet doesn’t fix your symptoms, another elimination diet like low FODMAP or Paleo, and probiotics can help.

Gluten sensitivity is a frequent concern amongst my patients and often comes as a self-diagnosis after experiencing a physical (and sometimes mental or emotional) reaction after eating gluten-based products, like wheat. There is ongoing debate about the extent of gluten sensitivity in the general population, but it’s a very real condition that causes a myriad of symptoms. Gas, bloating, changes in bowel habits, fatigue, headaches, and even anxiety can result from this condition. 

While gluten sensitivity may seem like just a health trend, the research does back up its validity as a diagnosis. However, it’s not as prevalent as the media would lead you to believe, only affecting up to 6% of the population, though the prevalence is potentially much higher in those with digestive symptoms [1, 2].

However, things aren’t always so “cut and dried” when it comes to treating non-celiac gluten sensitivity (a gluten intolerance that doesn’t meet the criteria for celiac disease). Gluten isn’t always the main culprit in “gluten sensitivity”, and there’s plenty of emerging evidence that other food sensitivities, FODMAP intolerance, or a disruption in the gut microbiome can be to blame.

Altering your treatment plan to encompass these other issues often means a temporary adjustment for sustainable long-term results. When indicated, addressing these concerns can heal a co-existing gluten sensitivity, and allow you to enjoy a broader array of foods.  

This is an important concept to highlight — treating a non-dietary issue with a highly-targeted and lifelong dietary solution may miss the mark and create unnecessary fear surrounding gluten. Now, that doesn’t go to say that gluten is safe for everyone, as that is certainly not the case. But this should be enough to make you pause and rethink if avoiding gluten forever is truly the solution to your symptoms, or if taking another approach may be worth a shot.

Back to Basics: What is Gluten Sensitivity and Who Has It?

To fully appreciate what it means to have gluten sensitivity, I’ll take a step back and briefly cover the defining characteristics of this condition. Gluten intolerance is an umbrella term that encompasses three gluten-implicated conditions: celiac disease, non-celiac gluten sensitivity, and a wheat allergy [3].

The term gluten sensitivity most often refers to non-celiac gluten sensitivity (NCGS), where an array of symptoms emerge after consuming gluten-containing foods and subside after eliminating them. 

Diagnosing NCGS can get a bit murky, as there are no reliable labs to back it up [4], and should only be diagnosed once celiac disease and a wheat allergy are ruled out (more on that below) It’s diagnosed purely in the presence of an adverse reaction(s) after consuming gluten products, which is why it’s commonly self-diagnosed. However, it does seem that this elimination/reintroduction approach is a fairly reliable way to tease out NCGS [4].

A 2015 study took two groups of subjects who were not celiac but consumed a gluten-free diet because they believed they felt better while gluten-free (presumably having NCGS). Then, in double-blind study fashion, they were randomly administered either a placebo pill or a gluten pill for one week. The results? 

Compared to placebo, those receiving the gluten pill reported significantly more symptoms, specifically:

  • Abdominal pain
  • Bloating
  • Brain fog
  • Depression
  • Aphthous stomatitis (canker sores)  

The placebo-controlled design is really important here, as those with NCGS are particularly vulnerable to the placebo effect during food elimination and reintroduction. Those who expect to have a return of symptoms after reintroducing gluten often do [5], and this underscores the importance of avoiding jumping to an NCGS diagnosis right away.

An extended list of common symptoms is listed below, along with what percent of the time they are present in NCGS [6], though they are certainly not limited to these:

Digestive Symptoms Non-Digestive Symptoms
  • Abdominal pain (87%)
  • Bloating (83%)
  • Diarrhea (54%)
  • Pain in the upper abdomen (52%)
  • Nausea (44%)
  • Air swallowing (36%)
  • Reflux (32%)
  • Canker sores (31%)
  • Alternating bowel habits (27%)
  • Constipation (24%)
  • Lack of well-being (68%)
  • Fatigue (64%)
  • Headache (54%)
  • Anxiety (39%)
  • Brain fog (38%)
  • Numbness (32%)
  • Joint pain/muscle pain (31%)
  • Skin rash (29%)
  • Weight loss (25%)
  • Anemia (23%)
  • Depression (18%)
  • Dermatitis (irritated skin) (18%)
  • Rhinitis (runny nose) (10%)
  • Asthma (5%)

Clinical trials like the one above suggest that NCGS is a valid medical condition that responds well to gluten elimination [7, 8]. That being said I’m not so much concerned with the existence of this diagnosis as I am with the extent of it. In other words — who will actually benefit from cutting out gluten? Is it really harmful to everyone, or are we overdoing it with the current trend of removing it from everyone’s diet?

As I’ll get into in a moment, the big issue here is that many other gut conditions (and food sensitivities) can masquerade as gluten sensitivity. In fact, NCGS is estimated to be present in only up to 6% of the general US population, meaning 94% (at the very least) can eat gluten without an issue [1]. This statistic is a far cry from the current belief that everyone should remove gluten from their diet. 

Though this number increases in those with digestive symptoms, it seems that it’s time to reevaluate how “villainous” gluten really is and if making blanket claims on the need to remove it from everyone’s diet it is causing more harm than good. 

And even if going gluten-free is the answer for you, the research is unclear if 100% avoidance is necessary for NCGS and/or if it needs to be avoided forever [9]. 

These issues are likely feuling the current overdiagnosis of gluten sensitivity and can prematurely lead you to think that life-long food restriction is the answer. It’s understandable if this feels overwhelming, and I’ll clear up some of this confusion in a moment. First, let’s briefly cover the rest of the gluten intolerance family to help you tease out what might be NCGS, and what isn’t.

A Quick Note on Other Kinds of Gluten Intolerance

Celiac disease is a gluten-triggered autoimmune condition, where antibodies break down the lining of the gut. It’s easy to distinguish from NCGS, as it presents with distinct antibodies and changes to the tissue of the small intestine that’s seen on biopsy. While the symptoms can be far more severe, it typically responds favorably to a strict gluten-free diet [4]. 

Occasionally, a gluten-free diet doesn’t fully resolve symptoms of celiac disease. Like those with NCGS, these “non-responders” will likely benefit from further investigation into other food intolerances or co-infections [10].

A wheat allergy is more akin to a peanut allergy, where an immune-driven, IgE reaction creates symptoms that quickly come on after eating wheat. It’s more common in children and can cause anything from mild hives to asthma [11]. It’s imperative that these populations avoid eating or inhaling all wheat-containing products, and keep an EpiPen on hand in the case of a severe reaction like anaphylaxis [12].

Here’s more insight into the three conditions that make up gluten-related disorders:

  Non-celiac gluten sensitivity Celiac disease Wheat allergy
Underlying cause Possibly genetic: up to 50% of patients have HLA-DQ2 and/or DQ8 mutations [3] Genetic: HLA-DQ2 and/or DQ8 mutations [3]
Autoimmune: antibodies target the tissue lining the intestines
Hypersensitivity reaction leading to overproduction of IgE antibodies [3]
Blood test biomarkers Typically none [4], but may be IgG antigliadin antibodies in some patients [3] IgA/IgG antibodies against tissue transglutaminase, endomysium, or deamidated gliadin peptides [3] IgE antibodies produced specifically for wheat, omega-5 gliadin, or nonspecific fat transfer proteins [3]
Effects on the intestines Intestinal damage and/or high immune cell counts [3] Atrophy of villi (hair-like projections along the small intestinal wall that help with nutrient absorption), excessive growth of intestinal glands between villi, and high immune cell counts [3] Intestinal damage, high immune cell counts, or atrophy of villi and excessive growth of intestinal glands between villi [3]
Prevalence in the US 0.5% to 6% [13] 0.5% [14] 0.2% to 1% [12]
Most common symptoms
  • Abdominal pain
  • Bloating
  • Diarrhea
  • Generally poor wellbeing
  • Fatigue
  • Headache [6]
  • Diarrhea
  • Weight loss
  • Malabsorption
  • Fat in the stools
  • Nutrient/vitamin deficiencies [4]
  • Rashes (dermatitis herpetiformis)
  • Neuropathy
  • Itching
  • Skin rash/ hives
  • Swelling
  • Asthma
  • Runny nose
  • Abdominal pain
  • Vomiting
  • Acute eczema
  • Anaphylaxis [12]

Why Gluten Might be the Scapegoat of the Century

While gluten certainly does cause issues for many, and should definitely be avoided in celiac disease and in some other cases, it seems that the functional health community (amongst others) has over-demonized this all-pervasive protein. As seen above, the prevalence of true gluten sensitivity may be a lot lower than commonly perceived, which unfortunately, can lead to strict food avoidance and missing any underlying contributors.

As it turns out, there are several common conditions with similar digestive and non-digestive symptoms that can mimic, overlap with, and even lead to gluten sensitivity:

  • FODMAP intolerance [15]
  • Histamine intolerance [16, 17]
  • Lactose intolerance [18]
  • Other food sensitivity (dairy, soy, corn, etc.)
  • Gut pathogens (including H.pylori, yeast, parasite, and amoebas) [18]
  • Small intestine bacterial overgrowth (SIBO) [18]
  • Leaky gut syndrome

The unifying theme among all of these conditions is inflammation in the intestines. And when an inflamed, angry gut is exposed to gluten (or any other food), there’s a pretty good chance that you can develop a sensitivity to it [19, 20]. This is an important point, as it shows that gluten itself may not be the root of the problem in NCGS, but rather a symptom of uncontrolled inflammation. 

Further complicating this issue is the fact that gluten sensitivity symptoms can take from a few hours to several days to emerge [11]. This can make it challenging to clearly define if gluten, another sensitivity, or even a SIBO flare is the real trigger. The take-home message here is not that gluten can’t be troublesome, but to try and not jump the gun when it comes to self-diagnosing a gluten sensitivity. 

Scoping out and addressing any underlying inflammatory triggers will heal up your gut, make you less reactive to foods, and presumably allow you to better tolerate gluten. 

The Gluten-FODMAP Conundrum

As discussed above, the general prevalence of NCGS in the general population is pretty low, but it jumps to 19–46% in those who have symptoms of irritable bowel syndrome (IBS) [2]. This makes gluten elimination look like a logical next step for treating digestive issues, but there may be a bit more to the story.

FODMAPs —  fermentable oligosaccharides, disaccharides, monosaccharides, and polyols — are certain carbohydrates and fiber present in foods. They tend to cause symptoms in a significant group of people, especially in those with gut dysbiosis (an imbalance of the flora) [19]. Interestingly, FODMAPs are often present in the same foods that contain gluten. There’s a very real possibility that FODMAP intolerance actually lies behind a “gluten sensitivity” in many people, making it appear more widespread than it truly is. = [4, 15, 21, 22, 23].

One study found that FODMAP intolerance is present in 50–80% of those with IBS-like symptoms, meaning you’re far more likely to have a FODMAP sensitivity than a gluten sensitivity. Research shows that it’s actually the FODMAPs that cause the aggravation in those with IBS, not gluten [15]

Furthermore, FODMAPs are present in many other gluten-free foods (honey, beans, onions, etc.), and cutting out just gluten may provide little (or no) benefit in those with FODMAP intolerance. This point brings us back around to what really matters here — finding the true cause of your symptoms so you can implement the best treatment for maximum relief.

A 2021 study looked at individuals who had both IBS and self-reported NCGS, who were already following a gluten-free diet [23]. After adopting a low-FODMAP diet, the participants either took gluten on placebo. While the gluten had no effect on the presence of leaky gut markers or symptoms, the low FODMAP diet significantly reduced them. 

Histamine intolerance is another top offender, as it’s estimated to be responsible for digestive tract complaints in 30–55% of people and has significant overlap with NCGS [17]. It can be difficult to appropriately diagnose gluten sensitivity in those who are unknowingly consuming a lot of high-histamine foods.

This may not seem like great news at first glance — restricting all FODMAPs and histamine-containing foods from your diet is a lot more work than taking out gluten. But studies show that a low FODMAP diet for four to six weeks can improve tolerability to higher FODMAP foods in the future. 

When viewed from a broader perspective, this means way less dietary restriction in the long term when compared to going gluten-free forever. But more importantly, it means you are addressing the root of your concerns, which leads to better health in the long run.

The Gut Microbiome and Gluten

As previously mentioned, a healthy gut microbiome is essential for a well-functioning digestive system. When there is a disruption — whether it be from a pathogen or an overgrowth of “good” bacteria — your gut can become inflamed and your immune system dysregulated. A haywire immune response makes you more vulnerable to developing leaky gut and food allergies [19, 20]. 

As your gut health improves, you should see your tolerability, or your tolerance, to gluten increase.

Small intestinal bacterial overgrowth (SIBO) is a common condition that is marked by an imbalance and overgrowth of the gut microbiome. SIBO can cause many health symptoms, including gas, bloating, diarrhea, constipation, abdominal pain, a foggy mind, and mood changes. Sound familiar? 

SIBO is a likely culprit behind many cases of “gluten sensitivity” and conveniently responds well to a low-FODMAP diet. This is likely because it deprives the overgrowth of small intestinal bacteria that can cause symptoms when provoked by eating large amounts of FODMAPs. 

I want to pause here and take a moment to reiterate that a positive response to anelimination diet doesn’t necessarily reaffirm that the foods themselves are the problem, but that food reactivity can be a symptom of a deeper issue — such as in the above case of FODMAPs and SIBO. But why is this really so important? Because it shows that gluten sensitivity is not always a true dietary problem, and forcing a dietary solution (gluten elimination) isn’t the best set-up for success.

When it comes to healing the underlying cause of gut distress, probiotics are a game-changer. These tiny organisms are a powerful way to balance the microbiome and clear harmful pathogens, and can be used with a targered elimination diet to reduce overall inflammation and symptoms. 

As a small 2020 clinical trial shows, adding probiotics to a gluten-free diet for three months led to fewer digestive and non-digestive symptoms and improved stool consistency in NCGS [24].  So whether you have true gluten sensitivity or your symptoms are are the result of another intolerance or digestive issue, probiotics can help cover your bases. 

I’ve designed a triple probiotic therapy approach that consists of taking three health-promoting categories of probiotics to give you maximum relief. I’ve taken the hassle out of taking these separately with my triple therapy probiotic sticks, available for purchase from my online store

A Spotlight on Celiac Disease

Surprisingly, 30% of people with coeliac disease don’t completely respond to a strict gluten-free diet, and some of the above factors may be to blame. A small 2021 study with 20 participants with persistent abdominal pain found that [10]:

  • 90% had other food intolerance
  • 55% had histamine intolerance
  • 30% had H. pylori

Another study found that treating lactose intolerance, parasitic infections, and SIBO resolved symptoms in 100% of celiac non-responders [18]. This is great news for those with celiac disease, but addressing these issues doesn’t replace the need for a strict gluten-free diet. 

However, it does highlight the complexity of gluten sensitivities, and why there may be more to the picture than simply eliminating gluten. 

An Updated Approach for Addressing Gluten Sensitivity

So how do we reconcile the known health issues that gluten can cause in light of this new information? The most important point to first mention is that if you don’t have health symptoms, you do not need to remove gluten from your diet (unless you have been diagnosed with celiac disease). There are no universally “bad” real foods, and gluten is a problem for far less people than commonly thought.

Second, it’s often unnecessary to get overly particular about saying gluten is an issue or is not an issue, or is an issue because of this or is not an issue because of that. We want to bring this down to a practical level. What can you do? How can you use this information to get healthier? 

–––Do we need to get overly obsessed with the mechanism? In my opinion, not necessarily. The patients that I see that get the most concerned about these things can actually end up creating more stress in their lives because they’re turning their diet into an obsession rather than just saying, “This works for me. This doesn’t work for me. I’m going to eat accordingly and focus on enjoying my life.” 

Testing for food sensitivites is pretty unreliable, and I find that working through the below steps is a great way to address a suspected gluten sensitivity without getting too lost in the details:

  1. Eliminate gluten and see if you feel better/ try a gluten challenge to confirm your results.
  2. If you have complete symptom relief on gluten-free foods, try reducing it to tolerance (the maximum amount of gluten you can eat before experiencing symptoms again) to avoid being unnecessarily restricting.
  3. If you have minimal results, consider a broader elimination diet to cover other food intolerances, like a low FODMAP or Paleo diet.
  4. Consider adding on probiotics or other supplements, like digestive enzymes, to address remaining symptoms.

So, it seems like there is certainly evidence that gluten can be an issue for some. You should take gluten out, see how you feel, bring it back in, and see how you feel.

If you notice a consistent, negative regression when you bring gluten back in, for whatever reason, then you probably want to be careful in the amount of gluten that you eat.

Some people will be able to tolerate small amounts. Some people will not. You’ll have to experiment and figure out where you fall on that spectrum.

And then secondary to that, if you take steps to improve your gut health by eliminating inflammatory foods, eating foods that may be anti-inflammatory, maybe using a probiotic to help with these transient anti-inflammatory species, like Bifidobacterium, that can also help with breaking down gluten, then your tolerability may increase.

And finally, if you need to seek out a skilled functional healthcare professional and treat something like a SIBO, that should further yet still improve your tolerability to some of these foods that may be questionable and may cause irritation in some.

There’s gold-standard evidence that gluten can be a problem for some. Does this mean we have to become gluten zealots and everyone needs to be gluten-free? No. And does it mean that people who are trying to claim gluten is a fad are right? I wouldn’t think so either. As it goes with most things when it comes to your health, I think there is a middle ground.

Gluten-Free Isn’t a Panacea for Health 

Gluten sensitivity isn’t always the simplest condition to navigate, but this article should get you started. Though it’s probably not as much of an issue as functional healthcare can lead you to believe, it still causes trouble for some. What’s important is to keep a holistic mindset when approaching gluten sensitivity, and to keep it as simple as possible. 

There’s no harm in eliminating gluten to see if it works for you, but try not to get hung up on if you truly have gluten sensitivity. If taking out gluten doesn’t seem to work, look into another elimination diet, or probiotics, or check out my book Healthy Gut, Healthy You, for a wealth of information on treating all types of food intolerances and resolving your symptoms for good.

The Ruscio Institute has developed a range of high-quality formulations to help our patients and audience. If you’re interested in learning more about these products, please click here. Note that there are many other options available, and we encourage you to research which products may be right for you.

➕ References
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