Is it Celiac or Gluten Sensitivity?

Gluten sensitivity is sometimes used as a catchall to describe any negative reaction to either gluten or wheat.

In reality, there are specific gluten- and wheat-related conditions that cause the body to react in different ways. Having a clear diagnosis is important to their treatment and management of symptoms.

Does gluten disagree with you?

Health conditions that trigger a reaction to gluten and/or wheat:

• Celiac disease
• Non-celiac gluten sensitivity (NCGS)
• Gluten ataxia
• Gluten intolerance
• Wheat allergy

Here are the differences between each of these conditions.

Celiac Disease

Celiac disease is a serious autoimmune disease that runs in families. 

An autoimmune disease causes your immune system to mistakenly identify your body’s own healthy cells as invaders. When triggered, it produces antibodies to repeatedly attack them.

For celiac disease, the trigger is gluten. It causes the body to attack the villi that line the small intestine when gluten is consumed.

This leads to malabsorption of nutrients, conditions related to malnourishment, and inflammation across the entire body. Celiac disease affects every part of the body and may cause numerous, seemingly unconnected, symptoms.

The only treatment for celiac disease is a lifelong 100% gluten free diet. At this time, there is no cure for celiac disease.

The average person has a 1% chance of developing celiac disease during their lifetime. If you have a first-degree full-blood relative (parent, sibling, or child) with celiac disease, your risk factor increases to 1 in 10.

How much gluten causes a celiac reaction?

Non-Celiac Gluten Sensitivity

Many people do not have celiac disease, but still react poorly to gluten.

They may have non-celiac gluten sensitivity (NCGS). 

While NCGS does affect the immune system (which is what causes symptoms), it does not trigger the autoimmune response.

As a result, a person with NCGS will not have celiac antibody markers in their blood or damage to their intestine as seen in celiac disease by an endoscopy-biopsy.

NCGS causes symptoms that may include nausea, vomiting, abdominal pain, headaches, diarrhea, joint pain, fatigue, brain fog, and many more. These might be slight or severe.

A NCGS diagnosis requires a negative celiac panel (blood work) followed by improvement of symptoms after following a diet without gluten. It is NOT recommended that you try a gluten free diet prior to celiac testing as that may prevent you from gaining an accurate diagnosis.

Depending on the cause of your NCGS and the severity of your symptoms, you may need to either eliminate gluten completely or simply decrease how often you consume it. 

The rate of NCGS is highly debated and it is still a poorly recognized condition.

Some studies estimate NCGS to be as high as 13% of the population. More research is needed to clarify the general risk factor, who is most likely to develop NCGS, and potential treatments.

Your likelihood of developing either celiac disease or NCGS increases if you have certain conditions, such as autoimmune disease, irritable bowel syndrome (IBS), or eczema.

Gluten Ataxia

Some people with celiac disease or NCGS may develop gluten ataxia, another autoimmune disorder.

When a person with gluten ataxia consumes gluten, the body releases antibodies that attack part of the brain called the cerebellum. Our cerebellum is responsible for movement, posture, balance, and speech.

Gluten ataxia is a progressive condition. It may start off mild and gradually become debilitating.

Early diagnosis and treatment with a gluten free diet are critical to stopping the progression and further cerebellum damage.

Symptoms of gluten ataxia are similar to other ataxia conditions. These include problems with walking or arm control, unsteadiness, issues with coordination, difficulty talking, vision problems, and symptoms of nerve damage in the hands, feet, and limbs.

Some researchers have estimated that potentially up to 23-41% of all people with unexplained ataxia may have gluten ataxia. More research into this recently recognized condition is needed.

Even though symptoms are triggered by consuming gluten, people with gluten ataxia are less likely to experience digestive symptoms. Like celiac disease, treatment for gluten ataxia requires a 100% gluten free diet for life.

Gluten Intolerance

Sometimes people mix up the term gluten intolerance with gluten sensitivity. Even though they both cause unpleasant symptoms after gluten is ingested, they have different impacts on the body.

Unlike an autoimmune disease, food sensitivity, or allergy, a food intolerance does not involve the immune system. As a result, it cannot cause severe allergic reactions, such as anaphylaxis.

A food intolerance means that your body does not make enough of the digestive enzymes needed to fully break down that particular food. As a result, the digestive process remains incomplete. This puts stress on the body and may lead to increased intestinal permeability (aka leaky gut syndrome).

One’s level of reaction may be related to the amount of the food and frequency it is consumed. People with food intolerances are likely to experience gastrointestinal symptoms (bloating, indigestion, diarrhea, constipation, etc.) after eating.

In contrast, people with celiac disease, gluten ataxia, or NCGS may not have any GI symptoms.

Food intolerances have been associated with asthma, chronic fatigue syndrome, and IBS.

While complete elimination may not be required, those with gluten intolerance may be healthier by limiting gluten in their diet. Digestive enzymes taken before meals may also improve their health.

It is very difficult to find testing for gluten intolerance. Pinnertest is the only food intolerance test kit I know of that checks for gluten intolerance. Personally, I have found the information provided by Pinnertest to be extremely valuable to our family’s health.

Wheat Allergy

Sometimes people with celiac disease describe themselves as having a “gluten allergy” when dining out to make it clear to waitstaff that their gluten free diet is a medical necessity, not a choice. There is nothing wrong with this if it helps you successfully stay gluten free.

While there is no such thing as a true gluten allergy, it is possible to have a wheat allergy. In fact, a wheat allergy is one of the top nine most common food allergies in the US.

People with wheat allergies will experience an allergic response to any part of the wheat, not just the gluten. However, gluten from other grains will not trigger an allergic response in these individuals.

Food allergies are not the same as food intolerances or sensitivities.

A food allergy happens when your immune system overreacts to a harmless food protein – an allergen. Food allergies may worsen over time and become life-threatening.

Having a clear diagnosis, patient education, and access to life-saving medication, called an epinephrine pen (aka epi-pen) are all critical to the management of food allergies.

It is possible to have both a wheat allergy and celiac disease.

Key Takeaways

A gluten free diet is absolutely necessary for everyone with celiac disease or gluten ataxia. Even a little bit of gluten triggers the autoimmune response and causes damage.

Ongoing damage from gluten exposure can lead to serious short- and long-term health problems for people with these autoimmune diseases.

Eliminating or greatly limiting gluten is also beneficial to anyone who has non-celiac gluten sensitivity, gluten intolerance, or certain autoimmune diseases and other inflammatory health problems.

If you have a wheat allergy, then you only need to eliminate wheat, not other sources of gluten.

Talk to your doctor about comprehensive celiac and allergy testing if you think you may be reacting to gluten or wheat.

Layered Living offers celiac education and support for patients and their families.

Citations

Celiac Disease. Cleveland Clinic. (2020, October 1). Retrieved November 12, 2021, from https://my.clevelandclinic.org/health/diseases/14240-celiac-disease. 

Fletcher, J. (2018, January 25). What happens in gluten ataxia? Medical News Today. Retrieved November 12, 2021, from https://www.medicalnewstoday.com/articles/320730. 

Food allergy and intolerance. Better Health Channel. (n.d.). Retrieved November 12, 2021, from https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/food-allergy-and-intolerance. 

Gluten Ataxia and Celiac Disease. Beyond Celiac. (2021, February 9). Retrieved November 12, 2021, from https://www.beyondceliac.org/celiac-disease/related-conditions/gluten-ataxia/. 

Non-celiac-gluten-sensitivity-epidemiology. Dr. Schär Institute. (2019, January 15). Retrieved November 12, 2021, from https://www.drschaer.com/us/institute/a/non-celiac-gluten-sensitivity-epidemiology. 

Symptoms of Non-Celiac Gluten Sensitivity. Beyond Celiac. (2021, April 1). Retrieved November 12, 2021, from https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/symptoms/.

What is a Food Allergy? Food Allergy Research & Education. (n.d.). Retrieved November 12, 2021, from https://www.foodallergy.org/resources/what-food-allergy. 

Wheat. ACAAI. (2021, October 4). Retrieved November 12, 2021, from https://acaai.org/allergies/allergic-conditions/food/wheat-gluten/. 

Disclaimer: I am not a doctor. This blog post is general information only and is not to be substituted for medical advice, diagnosis, or treatment.