Non-Celiac Gluten Sensitivity: Is Gluten Secretly Making You Sick?

Gluten makes you sick, but you don’t have celiac disease. What do you do now?

You think you are allergic to gluten.

Every time you eat it you get brain fog, fatigue, and intense abdominal bloating.

However, when your doctor ran a celiac blood test, the results came back negative.

You do not have celiac disease.

You may have gone back to eating all the gluten-filled delights this world has to offer – cinnamon buns, croissants, pastries, you name it! Yet you feel sick every time you eat wheat.

What’s going on?

Although celiac disease is the most widely known gluten-related condition, it isn’t the only one. There is also a condition known as non-celiac gluten sensitivity (NCGS). It doesn’t affect the body the same way, but the symptoms can be very similar.

What is non-celiac gluten sensitivity?

It’s incredibly confusing when you aren’t celiac, but still react to gluten. However, there is a chance you are dealing with NCGS.

Non-celiac gluten sensitivity (also referred to as non-celiac wheat sensitivity) and celiac disease have very similar symptoms. When you stop eating gluten/wheat, these symptoms usually improve. Some of the more common symptoms associated with celiac disease are:

• Abdominal bloating and pain
• Chronic diarrhea
• Vomiting
• Constipation
• Fatigue
• Weight loss

The common symptoms of NCGS are:

• Abdominal bloating and pain
• Chronic diarrhea
• Vomiting
• Constipation
• Fatigue
• Weight loss

Notice how the symptom picture is exactly the same.

People with NCGS and celiac disease suffer from very similar symptoms. Sometimes the symptoms are identical. What you need to remember is that the most common symptoms of celiac disease are not related to your gut! The same goes for NCGS – the symptoms don’t have to be strictly located in your gut.

If you have a strange array of symptoms, like those found in chronic fatigue syndrome or fibromyalgia, a hidden gluten sensitivity could be to blame!

I don’t have celiac disease. That means I can eat gluten, right? 

You cannot tell the difference between NCGS and celiac disease based on symptoms alone. Both conditions have a wide array of symptoms. Instead, you should start with a celiac test from your doctor.

However if you test negative for celiac disease, it is likely that your doctor will stop any further investigation into your symptoms. You may end up with a less-than-helpful diagnosis like IBS or chronic fatigue. But that’s about it. Your family doctor may even tell you that since you don’t have celiac disease, you can keep eating gluten!

It’s not that simple. 

Celiac disease occurs when your immune system is allergic to the gluten protein. It then confuses the gluten protein with the villi of your small intestine. Your immune system attacks and destroys your intestinal villi.

It makes sense that the two unique characteristics of celiac disease are:

1. Damage to the villi of your small intestine.
2. The development of tissue transglutaminase (tTG) antibodies
   • This is caused by an autoimmune reaction from your body.

In non-celiac gluten sensitivity, your intestinal villi are not damaged, and your body does not develop tTG antibodies. But you will still have many chronic symptoms and develop different antibodies. This is why proper testing for NCGS is so important. Testing should not end after a negative celiac screen.

Sometimes, the symptoms of NCGS are less severe than celiac disease and may include symptoms like:

• Headaches
• Fatigue
• Brain fog
• ADHD-like behavior
• Bloating
• Diarrhea and/or constipation
• Joint pain

In some people, the symptoms of NCGS can be just as severe and debilitating as celiac disease.

In summary, non-celiac gluten sensitivity is an immune reaction to wheat/gluten that is not celiac disease. The challenge with NCGS is getting a proper diagnosis. It’s not easy to obtain.

Below, I’ll show you the best ways to determine if you have a hidden gluten sensitivity!

How do you know if you have non-celiac gluten sensitivity?

Do you feel better on a gluten-free diet?

Do your symptoms return or get worse when you eat a lot of wheat or grain products?

Before there was fancy laboratory testing, there were elimination or reset diets. In these 30-day challenges, you removed all sources of gluten (including the hidden sources) for thirty days. At the end of the thirty days, you reintroduced gluten and made note of any changes in your symptoms.

In some people, the difference is dramatic. In other cases the difference is subtle, and sometimes even undetectable. I often tell patients who get gut issues when they eat gluten that they are lucky. Their body is clearly telling them that they cannot tolerate gluten and should not eat it.

Unfortunately, most cases are not so clear cut.

Just because you did not notice a difference on a gluten-free diet does not mean you don’t react to wheat. In autoimmune diseases, antibodies (which may be triggered by gluten) can develop up to 7 years before you experience any symptoms in your body.

If your reaction to gluten involves the creation of antibodies, there’s no way to feel or detect the increase in antibody production. Only laboratory testing can confirm if this process is occurring.

Be careful not to assume that you don’t have NCGS just because you don’t experience visible symptoms when you eat wheat products. Your symptoms could be manifesting below the surface without you even knowing!

Is there a lab test for non-celiac gluten sensitivity?

As more and more research comes out confirming that non-celiac gluten sensitivity exists, there will likely be more tests coming to market. However, there is currently only one lab with comprehensive testing to rule out gluten and wheat-related allergies/sensitivities.

There are other labs that test a small number of proteins found in wheat like gluten or the wheat protein itself. Unfortunately, these tests are not comprehensive and will only tell you if you have a reaction to gluten. However, wheat is made up of many more proteins. Your immune system may be reacting to many different wheat proteins or wheat peptides.

Some of the more common proteins found in wheat include:

• Wheat

  • Wheat is a commercially grown grain, which is processed and used in cereals, pasta, baked goods, sauces, and beverages. It is also used in pastes and glues and is raised as a fodder crop for livestock. (2)

• Wheat Germ Agglutinin 

  • The biological function of Wheat Germ Agglutinin is unknown; however, its suggested function is to protect the wheat crop against fungal infection. (3)

• Native + Deamidated Alpha-Gliadin-33-mer 

  • Gliadin is a simple, alcohol-soluble peptide present in wheat and occurring in various forms.  Alpha-Gliadin-33-mer is produced by your body’s natural digestion processes. (4)

• Alpha-Gliadin-17-mer 

  • Gliadin is a glycoprotein. It is an alcohol-soluble protein present in wheat and occurs in various forms. (5)

• Gamma-Gliadin-15-mer

  • Gliadin is a glycoprotein. It is an alcohol-soluble protein present in wheat and occurs in various forms. Gamma-Gliadins-15-mer are considered to be the most ancient proteins of the gluten family. (6)

• Omega-Gliadin-17-mer 

  • Gliadin is a glycoprotein. It is an alcohol-soluble protein present in wheat and occurring in various forms. (7)

• Glutenin-21-mer 

  • Glutenin is a wheat protein that words with gliadin to produce gluten. Glutenin gives firmness to bread dough during the kneading process by increasing stability. (8)

• Gluteomorphin+Prodynorphin 

  • Gluteomorphin, also known as Gliadorphin, is an opioid peptide formed from undigested Gliadin from gluten protein. Prodynorphin (PDYN) is an opioid polypeptide. Endogenous prodynorphin is a building block for endorphins, the neurotransmitters involved in anxiety, stress, deep emotional bonds, learning, and memory. Prodynorphin from wheat can compete with your own body’s prodynorphin at receptor sites. (9)

The celiac panel done by your doctor will only test for your body’s reactivity to the gluten protein. (10) But look at all the different wheat-based proteins and peptides I listed above!

Your body can react to any of these wheat proteins or peptides. Any of them! So even though you test negative for celiac disease, other wheat proteins could be contributing to your symptoms.

Should you get tested for non-celiac gluten sensitivity?

Testing for non-celiac gluten sensitivity is expensive. Luckily, it isn’t necessary for everyone.

Before any testing is done, start with a 30-day gluten-free reset diet. If you notice an improvement in your symptoms, then listen to your ‘gut’ and switch to a gluten-free diet. You don’t need your doctor’s approval to not eat something that makes you sick.

However – if you do not notice a change in your symptoms and still believe gluten/wheat affects you, keep reading.

Here are the situations where I highly recommend testing for NCGS:

• If you have a relative who has been diagnosed with celiac disease.

  • The closer in relation the relative is to you, the more important testing becomes.
    • Mother, father, brother, or sisters are considered first-degree relatives. If you have a first degree relative with celiac disease, I strongly recommend you pursue testing.

•  If you have an autoimmune condition

  • Examples include multiple sclerosis, Crohn’s, colitis, Hashimoto’s.
  • Gluten is often a trigger for autoimmunity.
  • Accurate testing is imperative for those with autoimmunity.

•  You have unexplained fatigue and/or brain fog

  •  Gluten tends to be a hidden cause of fatigue and brain fog.
  • Often a 30 day reset diet is not enough time to notice any changes in symptoms.

• You think you feel better on a gluten-free diet

  • Testing will give you an accurate description of whether or not you react to wheat products.

• You want to know how strict your gluten-free diet has to be

  • Not all gluten-free diets need to be followed 100% of the time.
  • If your body mildly reacts to gluten (without risk for autoimmune diseases) following an 80/20 rule is possible.
  • Testing allows you to determine how strict your diet needs to be.

More important than testing or reset diets is working with a knowledgeable functional medicine practitioner. A functional medicine practitioner will look at your entire history and help formulate the best nutrition plan based on your unique genetics.

Remember, no test is 100% accurate. Even with the best tests, false negatives happen. Testing will improve as researchers learn more about how the wheat proteins are digested.

Now, I want to hear from you!

What changes has a gluten-free diet made in your life?

Leave your reply in the comments section below!

Looking for more? Check out our other blog posts about gluten.