Non-celiac gluten sensitivity (NCGS) or non-celiac wheat sensitivity (NCWS)

Melinda Dennis MS, RDN, LDN

Q: Can you address non celiac gluten sensitivity (NCGS)? How is it diagnosed? What are the symptoms of NCGS?  What are possible complications with NCGS vs celiac disease? What is the treatment?

Answer


Non-celiac gluten sensitivity, also called non-celiac wheat sensitivity (NCWS) is a much-debated, poorly understood, and intensely researched condition in the celiac scientific community. The term NCWS also includes the closely related grains of rye and barley. NCWS is distinct from celiac disease, dermatitis herpetiformis, and wheat allergy.  Its exact prevalence is unknown although it appears to be more common in females.

NCWS is “a condition triggered by an adverse reaction to certain wheat components and characterized by gastrointestinal, namely irritable bowel syndrome (IBS)-like, symptoms, and by extraintestinal manifestations, occurring a few hours or days after the ingestion of foods made with gluten-containing cereals (ie, wheat, rye or barley).” (1) The symptoms resolve by avoiding these gluten-containing grains and return when the grains are rechallenged in the diet.

The diagnosis of NCWS comes after celiac disease and wheat allergy have been excluded using the appropriate testing. The scientific community is working to replace this diagnosis of exclusion with established biomarkers for NCWS.

While gluten appears to be the main trigger for symptoms, other components of wheat and related cereals may be involved in causing symptoms, either alone or in combination with wheat. Both amylase trypsin inhibitors (ATIs – a family of proteins found in wheat) and fermentable carbohydrates (known as FODMAPs) are under investigation for their possible roles in symptoms related to NCWS, as are other factors. (2,3)

Symptoms
Some of the gastrointestinal symptoms seen in NCWS include: (4,5)

  • bloating, abdominal pain/cramps, diarrhea, constipation or alternating diarrhea and constipation, nausea, vomiting, gastro-esophageal reflux

Some of the extraintestinal symptoms (symptoms outside the gut) found in NCWS include: (4,5):

  • canker sores, fatigue, headache, anxiety, foggy mind, arm/leg numbness, muscle/joint pain, weight loss and skin rash

Notice how similar these symptoms are to those of celiac disease.

Lab Abnormalities and Nutrition

Like celiac disease, features of malabsorption such as low vitamin D, ferritin (iron stores), and folic acid have been seen in NCWS. (1) Lactose and, less often, fructose malabsorption (poorly absorbed sugars), and food sensitivities have also been reported among patients with NCSW. (1)

For someone on the gluten-free diet, it is important to remember that  limiting the diet by even one food group can lead to lost nutrients and health concerns.  Here are a few examples: (6)

  • Calcium and Vitamin D (in the case of lactose intolerance)
  • Most of the B vitamins if you are not eating a variety of gluten-free grains, nuts and seeds
  • Fiber – most people do not get enough fiber in their diets; low fiber diets can lead to constipation.

Complications

Whereas previous studies did not show an association between NCWS and autoimmunity, more recent data are linking NCWS to autoimmune markers and autoimmune disorders (such as Hashimoto thyroiditis). (7,8)

Unlike celiac disease, however, certain complications such as small intestinal lymphoma (cancer), small bowel adenocarcinoma (cancer that develops in the lining or inner surface of an organ) and ulcerative jejunoileitis (ulceration of the small intestine associated with cancer) have not been seen in NCWS per a review article published in March 2019.(1)

Research suggests that the immune system and changes in the gut microbiome (dysbiosis) may play a role in NCWS. (4) Much more needs to be understood about NCWS – such as its frequency, cause, effect and natural course. (9)

 In the meantime………

Recommendations:

  • If you suspect you have a disorder related to gluten, make an appointment with a gastroenterologist.
  • Please do not try to diagnose yourself with NCWS or celiac disease and do not start a gluten-free diet if you suspect one of these conditions. You must be tested while still eating gluten to determine the correct diagnosis.
  • If a diagnosis is positive for NCWS, the recommendation is to follow a gluten-free diet for life (4)
  • In this case, it is highly recommended to visit with a registered dietitian who can help you understand the gluten-free diet and your unique nutritional needs. (6)
  • Your healthcare providers will offer medical and nutrition treatment specific to your own medical history, lab results, and nutrition needs. This might include, among other things, recommendations for specific vitamins and minerals.

References

  1. Volta U, et al. Nonceliac wheat sensitivity: an immune-mediated condition with systemic manifestations. In Gastroenterol Clin N Am. 2019 Mar;48(1):165-182.
  2. Junker Y, et al. Wheat amylase trypsin inhibitors drive intestinal inflammation via activation of toll-like receptor 4. J Exp Med. 2012 Dec 17;209(13):2395-408.
    https://www.ncbi.nlm.nih.gov/pubmed/?term=Junker+Y.+wheat+amylase+trypsin+inhibitors
  3. De Giorgio R, et al. Sensitivity to wheat, gluten and FODMAPs in IBS: facts or fiction? Gut. 2016 Jan;65(1):169-78.
    https://www.ncbi.nlm.nih.gov/pubmed/26078292
  4. Igbinedion S, et al. Non-celiac gluten sensitivity: all wheat attack is not celiac. World J Gastroenterol. 2017 Oct 28;23(40):7201–10.
    https://www.ncbi.nlm.nih.gov/pubmed/?term=Non-celiac+gluten+sensitivity%3A+All+wheat+attack+is+not+celiac.+World+J+Gastroenterol.+2017+Oct+28
  5. Bardella M, et al. Non celiac gluten sensitivity. Curr Gastroenterol Rep. 2016 Dec 1;18(12):63.
    https://www.ncbi.nlm.nih.gov/pubmed/?term=Bardella+M%2C+et+al.+Non+celiac+gluten+sensitivity.+Curr+Gastroenterol+Rep.+2016+Dec+1
  6. Mendo-Lopez, R. Non-Celiac Gluten Sensitivity. www.CeliacNow.org; Sept 2018.
    https://www.bidmc.org/centers-and-departments/digestive-disease-center/services-and-programs/celiac-center/celiacnow/non-celiac-gluten-sensitivity
  7. Carroccio A, et al. High proportions of people with nonceliac wheat sensitivity have autoimmune disease or antinuclear antibodies. Gastroenterology. 2015 Sep;149(3):596-603.
    https://www.ncbi.nlm.nih.gov/pubmed/26026392
  8. Volta U, et al. Is autoimmunity more predominant in nonceliac wheat sensitivity than celiac disease? Gastroenterology. 2016 Jan;150(1):282.
    https://www.ncbi.nlm.nih.gov/pubmed/?term=Volta+U.+Is+autoimmunity+more+predominant+in+nonceliac+wheat+sensitivity
  9. Lebwohl B, et al. Celiac disease and non-celiac gluten sensitivity. BMJ 2015;351:h4347.
    https://www.ncbi.nlm.nih.gov/pubmed/?term=Lebwohl+celiac+disease+and+non+celiac+gluten+sensitivity+BMJ

For indepth reading:

Volta U, et al. Nonceliac Wheat Sensitivity: An Immune-Mediated Condition with Systemic Manifestations. Gastroenterol Clin N Am 48 (2019):165-182.

The book is available electronically through Amazon (via Kindle) or a print version can be pre-ordered through Amazon: https://www.amazon.com/Celiac-Disease-Gastroenterology-Clinics-America-dp-0323655238/dp/0323655238/ref=mt_hardcover?_encoding=UTF8&me=&qid=1552958239

Individual articles/chapters from the book are available for purchase here: https://www.sciencedirect.com/journal/gastroenterology-clinics-of-north-america/vol/48/issue/1

For those with university library access, each chapter can be downloaded separately.

Disclosures: I co-wrote a chapter on “Nutritional Considerations of the Gluten-Free Diet” for this book. I have no financial interest in this book.

Note: This information is provided by NCA and Melinda Dennis, NCA's Senior Consulting Dietitian. This information is meant for educational purposes and is not intended to substitute for personalized medical advice or replace any medical advice provided directly to you by your health care provider. This information can be printed and used in consultation with your physician or dietitian. No liability is assumed by NCA, Ms. Dennis or her nutrition consulting service Delete the Wheat, LLC. by providing this information.

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About Melinda Dennis MS, RDN, LDN

Melinda Dennis, Senior Nutrition Consultant for NCA, is an expert celiac dietitian and and Nutrition Coordinator for the Celiac Center at Beth Israel Deaconess Medical Center in Boston, MA. Diagnosed with celiac disease in 1990, she specializes in the nutritional treatment of patients with celiac disease and gluten-related disorders.

Melinda lectures internationally and has written extensively on the nutritional management of celiac disease including the award-winning book Real Life with Celiac Disease. Melinda was the original founder of NCA in 1993 and so it is only fitting that she comes back to us in this capacity. We are truly honored to have her on our team.