Beyond Celiac: Five Gluten-Related Disorders
June 2022 | Linda Armstrong | ✓ Medically reviewed by: Gary Falcetano, PA-C, AE-C; Fabio Iachetti, MD; Rebecca Rosenberger, MMSc, PA-C; Eva Södergren, PhD, MSc
A licensed Physician Assistant with more than 25 years of diverse experience in emergency and disaster medicine, primary care, and allergy and immunology, Gary Falcetano is the U.S. Clinical Affairs Manager for Allergy in ImmunoDiagnostics at Thermo Fisher Scientific. Fabio Iachetti is a licensed physician with more than 15 years of diverse experience in several disease areas such as allergy, CV, pain, GI, rheumatology, urology, and diabetology. He is a Senior Medical Manager for Allergy in ImmunoDiagnostics Global Medical Affairs at Thermo Fisher Scientific.In addition to being a practicing Physician Assistant in the field of allergy and immunology for more than 20 years, Rebecca Rosenberger is the Associate Director for Clinical Affairs & Education, ImmunoDiagnostics at Thermo Fisher Scientific. A nutritionist by training, Eva Södergren now works as a Senior Scientific Advisor for Allergy on the Medical and Scientific Affairs team for Thermo Fisher Scientific’s ImmunoDiagnostics division.
Gluten is a family of proteins that acts as a sort of glue that holds food together. (The term is actually the Latin word for glue. Not surprising, huh?) Gluten can be found in rye, barley, triticale (a hybrid of wheat and rye), and wheat (including wheatberries, durum, emmer, semolina, spelt, farina, farro, graham, Kamut Khorasan wheat, and einkorn).1
These seemingly sweet little proteins have gotten a bad rap, as everyone from Billy Bob Thornton to Miley Cyrus have claimed to have removed gluten from their diets at one time or another. Naturally, then, if you have digestive issues or mysterious symptoms, you might be wondering if gluten is causing your troubles as well.
So to provide you with some reliable info—as opposed to celebrity chatter—we put together the following primer. It’ll help you understand some of the more common gluten-related disorders and what steps you might take to seek a diagnosis.
Gluten-Related Ailments
There are five major gluten-related disorders: celiac disease, dermatitis herpetiformis, gluten ataxia, wheat allergy (which can be triggered by both gluten proteins and other proteins in wheat), and non-celiac gluten sensitivity.2 (You probably haven’t heard of some of these, but each one is totally a thing. We promise.) Symptoms of these conditions overlap, so their diagnosis can be pretty difficult. 2 That said, here’s a brief rundown of each of them.
Simply put, celiac disease is an autoimmune reaction to gluten. Over time, the immune response damages the lining of your small intestine and can limit it from absorbing some nutrients. This damage, then, can also variably cause diarrhea, weight loss, bloating, fatigue, anemia, and more.3
An itchy, blistering skin disease, dermatitis herpetiformis is a type of rash that usually occurs on the elbows, knees, torso, scalp, and/or buttocks. Just like celiac disease, this condition is a cutaneous autoimmune reaction to the ingestion of gluten, which is often associated with changes to the lining of the small intestine, but DH might not actually include digestive symptoms. 3
Ataxia is a symptom of many conditions that affect the cerebellum, which is a part of the central nervous system. It causes clumsiness or a loss of balance and coordination that is not due to muscle weakness. Gluten ataxia, then, is a rare disease in which the immune system attacks the nervous system as a reaction to gluten ingestion. Those with gluten ataxia don’t always have the same digestive issues as those with celiac disease. 4
Wheat allergy is an allergic reaction from eating foods containing wheat or in some cases from inhaling or handling wheat flour. With celiac disease, gluten creates an abnormal autoimmune response. Conversely, with wheat allergy, the body produces specific antibodies (IgE) to one or several different proteins found in wheat. Symptoms can include: nasal congestion, headache, difficulty breathing, cramps, nausea, vomiting, diarrhea, hives, itchy rash or swelling of the skin swelling, and itching or irritation of the mouth and/or throat. 5
Those with non-celiac gluten sensitivity experience symptoms similar to those with celiac disease, but they don’t test positive for celiac serological markers. Previously, it was thought that people with NCGS didn’t have intestinal damage in conjunction with their symptoms. However, at least one study confirms that for those with NCGS, gluten triggers a systemic immune reaction and accompanying intestinal cell damage. 6
Foods that Contain Gluten
While gluten can be found in all of the foods listed in the first section, some sources identify the “Big Three” gluten sources as wheat, rye, and barley. Here’s a brief list of some foods that contain these three sources of gluten:1
- Wheat: breads, baked goods, soups, pasta, cereals, sauces, salad dressings, roux
- Barley: malt (e.g., malted barley flour, malted milk/milkshakes, malt flavoring, malt vinegar), food coloring, soups, beer, Brewer’s yeast
- Rye: bread (e.g., pumpernickel), beer, cereals
Keep in mind, this list is by no means exhaustive. Plus, in contrast to the other gluten-related disorders where you need to avoid all sources of gluten, a wheat allergic patient may be able to tolerate other grains such as barley and rye, as his or her allergy is not necessarily connected to gluten. Therefore, testing is important, and your healthcare provider can assist in providing additional nutritional guidance.
Diagnosing Gluten-Related Disorders
There are various ways to diagnose these disorders. For example, two types of blood tests can help diagnose celiac disease: 1) a serology test looks for antibodies in the blood that can indicate an autoimmune disease triggered by gluten, and 2) genetic testing for human leukocyte antigens can help rule out celiac disease.7
For wheat allergy, various tests and diagnostic tools may be used (e.g., skin-prick test, blood test, food diary, elimination diet, food-challenge test).8 Consult your healthcare provider to determine the type of tools and tests that are right for you.
Gluten-Free Diet
A gluten-free diet is essential for managing signs and symptoms of celiac disease and other gluten-related disorders. However, removing gluten from your diet likely changes your overall intake of fiber, vitamins, and other nutrients. Thus, it’s important to understand how this elimination can affect your overall nutritional needs. 9 (And just because your favorite singer or actor might go gluten free doesn’t mean it’s the right nutritional move for you.)
Also, keep in mind that those with a wheat allergy may not react to gluten and may in fact be sensitized to other proteins found in wheat. For these individuals, a gluten-free diet may be unnecessary.
For all these reasons, it’s important to consult your healthcare provider to make appropriate dietary choices.
Clearly, then, gluten-related issues aren’t just limited to celiac disease. These sticky proteins are linked to five key disorders. Still, it’s important to talk to your healthcare provider and successfully diagnose what’s causing your symptoms, rather than making assumptions and following the gluten-free trend. After all, you don’t want to break (with) bread or go against the grain if you don’t have to.
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- Celiac Disease Foundation (Gluten) [Internet]. Woodland Hills, CA: Celiac Disease Foundation; 2021. Available from: https://celiac.org/gluten-free-living/what-is-gluten. (Accessed Nov 2021.)
- Taraghikhah, N., Ashtari, S., Asri, N. et al. An updated overview of spectrum of gluten-related disorders: clinical and diagnostic aspects. BMC Gastroenterol 20, 258 (2020). https://doi.org/10.1186/s12876-020-01390-0.
- Mayo Clinic (Celiac) [Internet]. Rochester, MN: Mayo Foundation for Medical Education and Research; 2021 Aug 10. Available from: https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220. (Accessed Nov 2021.)
- Beyond Celiac [Internet]. Amber, PA: Beyond Celiac; 2021. Available from: https://www.beyondceliac.org/celiac-disease/related-conditions/gluten-ataxia. (Accessed Nov 2021.)
- Mayo Clinic (Wheat Allergy) [Internet]. Rochester, MN: Mayo Foundation for Medical Education and Research; 2021. Available from: https://www.mayoclinic.org/diseases-conditions/wheat-allergy/symptoms-causes/syc-20378897. (Accessed Nov 2021.)
- Celiac Disease Foundation (Non-Celiac Gluten) [Internet]. Woodland Hills, CA: Celiac Disease Foundation; 2021. Available from: https://celiac.org/about-celiac-disease/related-conditions/non-celiac-wheat-gluten-sensitivity. (Accessed Nov 2021.)
- Mayo Clinic (Celiac Testing) [Internet]. Rochester, MN: Mayo Foundation for Medical Education and Research; 2021. Available from: https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225. (Accessed Nov 2021.)
- Mayo Clinic (Wheat Allergy Diagnosis) [Internet]. Rochester, MN: Mayo Foundation for Medical Education and Research; 2021. Available from: https://www.mayoclinic.org/diseases-conditions/wheat-allergy/diagnosis-treatment/drc-20378902. (Accessed Nov 2021.)
- Mayo Clinic (Gluten-Free Diet) [Internet]. Rochester, MN: Mayo Foundation for Medical Education and Research; 2021. Available from: https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/gluten-free-diet/art-20048530. (Accessed Nov 2021.)
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