Dietitian Tiffany Torok discusses Gluten Intolerance, what it is, what to do about it, and how the medical community sees this condition.
Gluten intolerance, also known as non-celiac gluten sensitivity, is one of several disorders on the gluten-sensitive spectrum. In this condition, the digestive tract responds to a part of gluten (either a carbohydrate or protein) by producing similar symptoms of celiac disease without the associated intestinal damage to the nutrient-absorbing site of the digestive system.
The digestive symptoms of non-celiac gluten sensitivity are similar to celiac disease symptoms and include gas, bloating, abdominal pain, stomach cramps, nausea, and constipation. Related symptoms of gluten sensitivity include headaches, weight loss, joint pain, and skin reactions.
What happens when you test negative for Celiac but still have symptoms?
Typically, when someone tests negative for celiac disease but still struggles with unpleasant digestive issues following ingestion of gluten, they are either diagnosed with exclusion of IBS or non-celiac gluten sensitivity.
This can be frustrating for those individuals because often, they have been trying to find an answer for what has been making them feel so miserable, and a blood test or endoscopy does not verify this diagnosis.
However, both conditions are real and respond to a gluten-free or low FODMAP diet. Also, in the case of IBS, further dietary elimination is required to determine what saccharide is responsible. This is called a low FODMAP diet; gluten-containing grains are part of the high FODMAP food list.
What is Gluten Intolerance, and What Causes It?
Gluten intolerance, or non-celiac gluten sensitivity, is diagnosed after a work-up for celiac disease and wheat allergy are negative. However, the individual still experiences adverse reactions to the ingestion of gluten.
Gluten intolerance is not an autoimmune disease or a gluten allergy but rather a reaction to a protein or carbohydrate present in wheat or a deficiency in the digestive enzymes that break down the gluten particle or other parts of the wheat grain.
(Cardenas-Torres, et al., 2021).
What Are The Symptoms of Gluten Intolerance?
- Bloating – bloating occurs when bacteria in the intestines attempt to break down food from an imbalance in gut microflora or a lack of adequate enzymes. When this occurs, the bacteria create gas as a byproduct of their digestion, and the inside of the intestinal tract becomes inflamed, causing gas, bloating, and abdominal pain.
- Nausea – nausea is the sensation of feeling like you need to vomit. This can happen with any GI condition as your body is triggered to rid itself of an invading organism.
- Skin Reactions – some common skin reactions in the gluten-intolerance spectrum disorders are dermatitis herpetiformis and eczema.
- Abdominal Pain – abdominal pain associated with gluten intolerance is related to inflammation, gas, or due to a rush of water into the digestive tract to eliminate the offending product.
- Fatigue – the fatigue associated with the gluten-related spectrum of disorders is often debilitating, meaning there is not enough caffeine in the world to snap someone out of it.
- Brain fog – related to the body’s production of inflammatory cells, brain fog, makes it very difficult for someone to think or remember things that used to be simple for them; often, working memory is affected, so the person has a difficult time remembering the steps involved in a simple task.
- Arthralgia, also known as “joint pain,” differs from arthritis because it does not cause permanent damage. However, it is still very painful, and when added to the other symptoms commonly experienced by someone with a gluten-related disorder, it can be challenging to manage.
- Headaches and Migraine – many individuals with gluten sensitivity or celiac disease experience frequent headaches, often migraines. Again, this is thought to be related to inflammation from the constant immune response.
How Many People Are Affected By Gluten-Spectrum Disorders?
Epidemiologists have used the results of recent survey studies to conclude that approximately 0.5-15% of individuals self-report having non-celiac gluten sensitivity.
The prevalence of celiac disease is only 0.5-1.4% for comparison. For IBS, that number is 12% of the population. Confirmed wheat allergy affects approximately 0.2-1% of individuals.
Patel and Samant, 2023
What is Gluten?
Gluten is a protein complex, precisely the combination of two proteins, glutenin and gliadin, and is found in wheat, rye, and barley. However, due to modern processing and storage techniques utilized by food production companies, many processed foods are unsafe for individuals with celiac disease or gluten intolerance, including most oats, due to cross-contact issues.
Since gluten is not only a part of wheat but also in barley and rye, food manufacturers do not have to declare if gluten is present in the food, but they must disclose if their product contains wheat. Recently, since the passage of the gluten-free labeling Act, if a food manufacturer claims that a food is gluten-free on its label, that food has to be tested to be under 20 parts per million (FDA.gov, 2013).
What Is The Gluten Intolerance Spectrum?
There are several disorders for which the gluten-free diet is used as a therapeutic treatment.
Aside from celiac disease, individuals with a confirmed Wheat allergy, gluten sensitivity, dermatitis herpetiformis, gluten ataxia, irritable bowel syndrome, and non-celiac gluten sensitivity also utilize the gluten-free diet as a treatment for their conditions.
Recent scientific research continues to try to establish tests and biomarkers to diagnose the conditions on the gluten-intolerance spectrum accurately. In non-celiac gluten sensitivity, in vitro and animal studies have found that the evidence in animal studies suggests that gliadin can increase intestinal permeability, induce cellular apoptosis, and cause changes in neuromotor function.
Non-celiac gluten sensitivity has been a recognized condition since 1978. According to an update about non-celiac gluten sensitivity, it may be a non-IgE-mediated food allergy to wheat, although further research is ongoing.
Additionally, in IBS, it has recently been established that one of the primary carbohydrate sources found in wheat is from FODMAPS, which are fermentable sugars that, when ingested in individuals with IBS, cause gas, bloating, abdominal pain, constipation, and/or frequently diarrhea.
Recent evidence points to the fructans in wheat as the trigger of symptoms in IBS rather than the gluten protein (Croall, et al., 2019).
Additionally, in non-celiac gluten sensitivity, it is hypothesized that the trigger is one or more of the following: gluten proteins, amylase, and trypsin inhibitors, wheat germ agglutins, and lipopolysaccharides (Rinninella, et al. 2019).
What is a ‘Wheat Allergy’?
A true wheat allergy is fairly common in childhood and is an IgE-mediated allergic response causing hives, rashes, diarrhea, or vomiting. In a wheat allergy, the body responds to a specific protein only found in wheat. However, they can probably still eat rye grains and barley.
Oats may remain questionable depending on the severity and sensitivity of the allergic reaction because they may be tainted with wheat from cross-contact.
A blood test or a skin prick test typically diagnoses a wheat allergy. Fortunately, wheat is one of the top eight allergens and food manufacturers must include a warning label.
Notes from Tiffany Torok, MA, RDN.
How Do You Treat Gluten Intolerance?
As a registered dietitian, I practice medical nutrition therapy, including targeted nutrition interventions to treat underlying symptoms and diseases. I don’t diagnose but instead work within a doctor’s condition diagnosis.
I cannot diagnose someone with IBS or gluten intolerance. Still, I can help those individuals alleviate their symptoms by recommending and teaching them a way to eat that helps to improve the associated gastrointestinal symptoms.
For gluten-related disorders, I recommend a gluten-free diet with additional elimination if necessary, such as eliminating lactose if the individual continues to struggle with gluten-free foods. This is because lactase, the enzyme that breaks down lactose, is produced at the very tip of the intestinal villi, and a person can sometimes produce less lactase due to intestinal inflammation or nutritional deficiencies.
I recommend a low FODMAP diet with a reintroduction phase for those with IBS to find the specific triggers.
For someone with a true Wheat Allergy, I recommend a wheat-free diet, avoiding cross-contamination for someone with a wheat allergy.
What Is The Difference Between Gluten Intolerance and Celiac Disease?
The distinct difference between gluten intolerance and celiac disease is that celiac disease is an autoimmune disorder and gluten intolerance is considered a functional bowel disease.
This is because, with celiac disease, the immune system attacks the nutrient-absorbing part of the small intestines, rendering them unable to function properly. This leads to nutritional deficiencies, including iron deficiency anemia.
With gluten intolerance, the body has difficulty digesting gluten-containing grains, and/or the immune system creates an inflammatory response.
However, in gluten intolerance, the intestines still absorb nutrients, meaning the small intestines are still functional (Catassi, et al., 2017).
Tiffany’s Personal Family Story
I was the first person in my family diagnosed with a gluten-related disorder, in my case celiac disease. After I was diagnosed, I let my family members know that they were at a higher risk of developing celiac disease.
Since then, several family members have been diagnosed with either celiac disease or gluten intolerance.
It can be hard for someone to get an accurate diagnosis if they eliminate gluten on their own, however, as a parent of two gluten-intolerant kids, I can say that it is also hard living with the pain and other gluten intolerance symptoms while waiting for a diagnosis.
Tiffany Torok, MA, RDN
Final Thoughts About Gluten Intolerance
Non-celiac gluten sensitivity is a condition described over four decades ago. However, non-celiac gluten sensitivity has become an entirely accepted medical diagnosis in recent years. Researchers are still trying to identify blood markers to develop better diagnostic testing so that individuals have an accurate diagnosis and know the treatment for their symptoms. Additionally, there is emerging research studying pharmacological and immunological therapies.
Gluten-Free Resources on the Blog
Resources and References
Rinninella E, Cintoni M, Mele MC, Gasbarrini A. Irritable Bowel Syndrome (IBS) and Non-Celiac Gluten Sensitivity (NCGS): Where Is the Culprit Hiding? Nutritional Tips for Gastroenterologists. Nutrients. 2019; 11(10):2499. https://doi.org/10.3390/nu11102499
Catassi C, Alaedini A, Bojarski C, Bonaz B, Bouma G, Carroccio A, Castillejo G, De Magistris L, Dieterich W, Di Liberto D, Elli L, Fasano A, Hadjivassiliou M, Kurien M, Lionetti E, Mulder CJ, Rostami K, Sapone A, Scherf K, Schuppan D, Trott N, Volta U, Zevallos V, Zopf Y, Sanders DS. The Overlapping Area of Non-Celiac Gluten Sensitivity (NCGS) and Wheat-Sensitive Irritable Bowel Syndrome (IBS): An Update. Nutrients. 2017 Nov 21;9(11):1268. doi: 10.3390/nu9111268. PMID: 29160841; PMCID: PMC5707740.
Croall ID, Trott N, Rej A, Aziz I, O’Brien DJ, George HA, Hossain MY, Marks LJS, Richardson JI, Rigby R, et al. A Population Survey of Dietary Attitudes towards Gluten. Nutrients. 2019; 11(6):1276. https://doi.org/10.3390/nu11061276
Cárdenas-Torres FI, Cabrera-Chávez F, Figueroa-Salcido OG, Ontiveros N. Non-Celiac Gluten Sensitivity: An Update. Medicina. 2021; 57(6):526. https://doi.org/10.3390/medicina57060526