Almost daily in my work with IBD patients, I get to see the power of nutrition therapy for reducing inflammation and alleviating symptoms. Nutrition therapies like the Specific Carbohydrate Diet, Crohn’s Disease Exclusion Diet, and more are backed by a growing body of research and are increasingly becoming a mainline treatment. This is such a game changer for people with Crohn’s and Ulcerative Colitis!

But patients and even practitioners are sometimes puzzled by a missing piece. Where does gluten fit in, if at all?

My IBD patients often ask me if they should trial a gluten-free diet. Here are some of the reasons why:

• Gluten-free is popular. In the U.S. alone, the gluten-free products market is expected to reach $11 billion by 2026.
• Those with celiac disease, another disease involving intestinal inflammation and damage, must strictly avoid gluten.
• They may have heard that gluten could increase intestinal inflammation or permeability.
• Friends, family, or practitioners may have suggested they remove gluten because of growing awareness around gluten sensitivity.
• They may experience overlapping issues that are linked to gluten. Sometimes, they’ve tried avoiding wheat or gluten and felt better.
• Inflammatory Bowel Disease is complex, and dietary triggers can be challenging to sort out. It’s natural for patients to seek a clear-cut fix.

So, should people with IBD avoid gluten?

Honestly, we don’t know yet. We need more research and trials to sort it out. But both patients and practitioners alike need guidelines on gluten consumption in Crohn’s and Ulcerative Colitis, so I’d like to walk you through what we do know and how I advise my patients.

First, what is gluten?

Gluten is a protein that helps bread hold its shape and elasticity during rising and baking. It’s found naturally in wheat, rye, and barley. There are two main proteins in gluten: glutenin and gliadin, with gliadin being the primary trigger that initiates an inflammatory response in Celiac Disease.

Who needs to avoid gluten?

While the research on gluten in IBD is not yet clear, there are several key populations that need to eliminate or reduce gluten consumption.

People with Celiac disease must strictly avoid all gluten

Celiac disease is a life-long digestive and immune disorder that causes damage to the small intestine when gluten is ingested. Symptoms can include diarrhea, constipation, abdominal pain, joint pain, bloating, gas, fatigue, rash, weight loss, malnutrition, and anemia. Over time, untreated Celiac can lead to bone loss, stunted growth, and increased risk of certain autoimmune disorders and cancers.

The current estimate is that roughly 1.4% of people worldwide have Celiac, with some variation between the world’s regions, and with women affected slightly more than men.¹

Celiac disease is typically diagnosed via blood tests followed by a small intestinal biopsy to confirm. It’s important to know that these tests may not be accurate if you’ve been following a gluten-free diet on your own prior to seeking a diagnosis. In such cases, gastroenterologists may prescribe a “gluten trial” prior to intestinal biopsy.

If you’ve been diagnosed with Celiac Disease, it’s essential that you permanently avoid all sources of gluten in order to heal your small intestine, prevent recurrence, and avoid long-term complications.

Patients on certain Nutrition Therapies for IBD need to avoid gluten

If you are a non-Celiac undergoing certain nutrition therapies for IBD, you’ll need to avoid gluten as specified in the protocol. These treatments include Exclusive Enteral Nutrition (EEN), the Specific Carbohydrate Diet (SCD), and the Autoimmune Protocol (AIP). Additionally, those following the Anti-Inflammatory Diet for IBD (IBD-AID) should avoid all gluten-containing foods except for barley. In these cases, avoiding gluten is typically limited to the duration of the diet and the patient’s tolerance; it is not a life-long limitation as in Celiac.

Patients with a wheat allergy must avoid all wheat and maybe gluten

People can have an IgE-mediated allergy to wheat when ingested or even inhaled. Allergic symptoms can include swelling, itching, difficulty breathing, headache, and gastrointestinal symptoms. In this case, the body’s immune response may be to any of the proteins contained in wheat – not always gluten – and the allergic mechanism is different from Celiac. In some cases, those with wheat allergy will need to avoid other cross-reactive grains like rye and barley.² Patients with a wheat allergy can consult with their allergist for help in determining which other grains are appropriate for their diet and if gluten is safe to consume. 

Who needs to minimize gluten?

Some non-Celiac patients with gastrointestinal or immune issues may find improvements through minimizing gluten intake or adjusting which kinds of gluten-containing foods they eat.

Those with Non-Celiac Wheat or Gluten Sensitivity (NCWS/NCGS) benefit from avoiding gluten or modifying their intake

Those with NCWS/NCGS can have similar symptoms from consuming gluten as those with Celiac Disease, but they don’t have Celiac or wheat allergy. It’s thought that the numbers of those with NCWS/NCGS are as great or greater as those with celiac. For a diagnosis of NCWS/NCGS, a patient must experience symptoms with wheat or gluten consumption and test negative for Celiac and wheat allergy.

This can be a frustrating place to be for patients who know they react negatively to consuming gluten, but tests aren’t finding anything. There are no lab tests to definitively rule in NCWS/NCGS and the research on the subject is still limited. It can also make it challenging to know how careful they should be about consuming wheat or gluten, causing them to wonder if different varieties of wheat are better or if occasional splurges will hurt.

It was long thought that NCGS caused no intestinal damage, so gluten avoidance was strictly about minimizing symptoms. However, a 2016 study called that idea into question. Researchers looked at patients (without IBD) who reported symptoms from eating wheat but who had been cleared of having Celiac Disease or wheat allergy. When they were exposed to wheat, their blood showed evidence of both a systemic immune response and signs suggestive of compromised lining of the intestine.³

As research progresses, we may learn more about what triggers symptoms when these patients consume wheat or gluten. It’s important to note that other issues can mimic NCWS/NCGS, including sensitivity to the plant defense chemical known as amylase-trypsin inhibitor, and fructans, which are fermentable sugars (FODMAPs) found in a range of plant foods that can trigger bloating, gas, diarrhea, and other GI symptoms. These plant foods include various fruits, vegetables and processed grain products such as cereals, breads, tortillas and marinades or mixes that typically contain gluten. Because reactions to these substances involve reduced digestion along with fermentation in the intestine, symptoms from wheat do not necessarily equate to an increase in inflammation.

In practice, nutrition and medical professionals find NCWS/NCGS patients can see improvements from avoiding, limiting, or modifying their sources of gluten. I recommend those with symptoms from wheat or gluten who have been cleared of Celiac and wheat allergy work with a GI-focused registered dietitian. Typically, we guide patients to remove wheat first and, if symptoms don’t resolve, then all gluten-containing products for a defined period of time. Then we carefully and systematically reintroduce these foods to determine an individual’s tolerance. This tolerance can also wax or wane over time in response to triggers or stressors like travel, illness, medications, and surgeries.

Patients on certain Nutrition Therapies for IBD may need to minimize gluten

 As mentioned above, IBD patients who are following the final stage of the Anti-Inflammatory Diet for IBD (IBD-AID) will be allowed to eat barley, but must restrict all other forms of gluten given the lack of research at this time. The Crohn’s Disease Exclusion Diet (CDED) in some phases allows a defined amount of whole grain bread or pasta daily.

How many people with IBD also have Celiac Disease or Non-Celiac Gluten or Wheat Sensitivity?

So, we arrive at the question: how likely are you to have both IBD and Celiac Disease or NCWS/NCGS?

A 2020 meta-analysis reviewed 65 relevant studies and found evidence for an increased risk for Celiac Disease among IBD patients compared to other patient populations. ⁴ For Non-Celiac Gluten Sensitivity, one study found that patients with IBD self-report having NCGS at a much higher rate than controls who had dyspepsia but no IBD.⁵

If you’re one of the unlucky few who have IBD plus Celiac Disease, then you will need to cut out all gluten for life.

If you have both IBD and NCGS/NCWS, then your tolerance may vary when flaring or in remission and it’s best to work with an IBD Nutritionist to determine the diet modifications that will best serve you.

Gluten and Inflammation

What about reports that gluten causes intestinal inflammation and increases intestinal permeability (or “leaky gut”)? Is it perhaps safer to cut out gluten when you have IBD just in case it’s causing low-level damage?

Again, we just don’t know for sure. One small study with tissues taken from all study participants showed increased intestinal permeability when exposed to gliadin. However, the response was much greater for those with active Celiac and gluten sensitivity than for those with Celiac in remission or those without Celiac. ⁶ The finding does provoke questions as those with IBD already face intestinal inflammation and increased permeability, however, this study did not include IBD patients.

On the other hand, a small 2021 randomized trial of IBD patients and controls without IBD aimed to limit (but not fully eliminate) gliadin exposure in the context of a Mediterranean diet over 8 weeks. The intervention group eating plan also added functional foods like curcumin and removed or reduced potential irritants like food additives and alcohol. In this case, the diet made no difference in terms of markers of inflammation or intestinal permeability, although patients did report symptom improvement. ⁷ This study highlights the fact that food components work synergistically and not alone and it’s difficult to single out specific food components such as gluten.

What we know from the CDED and other IBD Diets

Ultimately, the goal of any treatment for IBD is to achieve symptom control and remission. We now have many evidence-based Nutritional Therapies for IBD that support this goal.

The Crohn’s Disease Exclusion Diet (CDED) now has two randomized clinical trials^{8   9} that demonstrate its effectiveness as part of a Crohn’s disease treatment protocol in both pediatric and biologic naive adults. What I’d like to point out here is that the CDED includes gluten in the form of wheat bread (homemade preferred) in phases 2 and 3 in specified amounts if desired. Both adult and pediatric patients on the CDED achieved remission in high percentages — while consuming wheat and gluten. The frequency at which participants consumed gluten is not specified in the studies.

Another randomized clinical trial known as The Diet to Induce Remission in Crohn’s Disease (DINE-CD) study, pitted the Specific Carbohydrate Diet (gluten/grain free) against a Mediterranean Diet (gluten allowed) and found that almost half of the participants achieved symptomatic remission at six weeks. The remission percentages for each diet were roughly similar and statistically insignificant by week 12, meaning participants showed similar responses on both diet arms with or without gluten. The amount of gluten consumed by participants was not specified in the study.¹⁰

What about official guidelines? A recent report in the Lancet looking at the interaction of diet and gut microbiome patterns in IBD indicates there is no need to restrict gluten-containing foods.¹¹ Additionally, the International Organization For the Study of Inflammatory Bowel Disease (IOIBD) in their 2020 recommendations for patients with IBD state there is “insufficient evidence to recommend restriction of wheat and gluten.”¹²

Kim’s general guidelines for gluten and IBD

Although you can have a perfectly balanced and nutritionally complete diet without grains, gluten-containing grains offer taste, variety, and really good bread! Plus, they’re hard to avoid.

The decision to consume wheat or gluten when you have IBD is highly individual — based on your own genetics, habitual diet, lifestyle, immune function, microbiome composition and more — and is best discussed with your GI team.

We’re rapidly moving toward an era of precision nutrition, where we will be able to tailor nutritional recommendations based on certain characteristics of an individual and predict how they may respond to particular dietary modifications.¹¹ This will hopefully remove some trial and error from the process and improve outcomes for IBD patients.

Until then, in general, I don’t believe it’s necessary to exclude wheat or gluten if you don’t seem to react to them and you’re not on a Nutrition Therapy protocol which restricts them.

If you do react to gluten or are on Nutrition Therapy, here are some rough guidelines:

If you have Celiac Disease

 Avoid gluten.

If you are on a Nutrition Therapy for IBD

Consult your dietitian (or find one like me) for individualized guidance for your specific Nutrition Therapy. The goal should be maximum dietary freedom while aiding in symptom and disease management.

If you have Gluten Sensitivity

First, try a form of gluten that may be better tolerated and easier to digest. They’re not all equivalent! (Unless you have Celiac.) These can include:

• Sourdough bread with a longer fermentation period (this will reduce phytic acid, help break down the gluten through digestive enzymes known as proteases, and provide additional gut health benefits). Try your hand at baking or find a local bakery you like.
• Give spelt a try. It’s an ancient relative of wheat which may be better tolerated.
• Take a cue from European baking, which prefers soft white wheat flours (durum) containing more carbs and less gluten, and features semolina pasta, both of which may cause fewer reactions. If you can’t find durum or semolina flours, pastas or other products locally, I love purchasing from Azure Standard for bulk and specialty items.
• Find other whole grains like rice, millet, quinoa or teff that you can use in addition to your favorite gluten containing options.

Most importantly:

1. Do what works best for you and find specialized support if you are having difficulty or feel too limited with your food choices.
2. Eat gluten-containing foods as part of your varied diet if you enjoy and tolerate them. Try fermented options first or wheat varieties noted above. Variety may mean you consume more gluten-containing items at times and less at other times, depending on your situation (i.e. you are traveling abroad and want to enjoy the cultural foods).
3. Prioritize homemade gluten-containing foods vs. store bought options, which likely contain food additives and added sugars. These products may worsen or be the true cause of intolerance.
4. Eat a varied diet. We know that a diverse diet, including whole grains, promotes a varied gut microbiome.

Before excluding gluten try:

Fermented recipes for your favorite breads, buns, and tortillas – bonus: they’ll be homemade which tastes best in my opinion!

If you need to exclude gluten or wish to try something new, here are some of my favorite gluten substitutes:

It is fun to experiment with new options in addition to your staples/familiar foods.

For Pastas: Try

• Lentil, pea or bean pastas (I love Trader Joe’s, Wellbees, Explore Cuisine and Tolerant brands.)
• Orzo – lentil varieties exist
• Rice/Quinoa pastas
• Spiralized veggie noodles such as zucchini, butternut squash, carrot

For Tortillas: Try

• Gluten-free flour-based tortillas – sub with corn, lentil flour, rice, potato, or other wheat flour alternatives such as coconut or almond. Store bought tortillas often contain a variety of food additives. Look for options with recognizable ingredients.

While there are no definitive answers yet as to which IBD patients can consume gluten and which should avoid or minimize it, I hope this walkthrough has given you the guidance you need to make informed food choices for your condition and seek additional help when needed. As always, I’m here to answer questions from patients, practitioners and health organizations alike, so please reach out!

1. Singh, P., Arora, A., Strand, T. A., Leffler, D. A., Catassi, C., Green, P. H., … & Makharia, G. K. (2018). Global prevalence of celiac disease: systematic review and meta-analysis. Clinical gastroenterology and hepatology, 16(6), 823-836.[↩]
2. Czaja-Bulsa, G., & Bulsa, M. (2017). What Do We Know Now about IgE-Mediated Wheat Allergy in Children?. Nutrients, 9(1), 35. https://doi.org/10.3390/nu9010035[↩]
3. Uhde, M., Ajamian, M., Caio, G., De Giorgio, R., Indart, A., Green, P. H., Verna, E. C., Volta, U., & Alaedini, A. (2016). Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease. Gut, 65(12), 1930–1937. https://doi.org/10.1136/gutjnl-2016-311964[↩]
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6.  Hollon, J., Puppa, E. L., Greenwald, B., Goldberg, E., Guerrerio, A., & Fasano, A. (2015). Effect of gliadin on permeability of intestinal biopsy explants from celiac disease patients and patients with non-celiac gluten sensitivity. Nutrients, 7(3), 1565–1576. https://doi.org/10.3390/nu7031565[↩]
7. Lacerda, J. F., Lagos, A. C., Carolino, E., Silva-Herdade, A. S., Silva, M., & Sousa Guerreiro, C. (2021). Functional Food Components, Intestinal Permeability and Inflammatory Markers in Patients with Inflammatory Bowel Disease. Nutrients, 13(2), 642. https://doi.org/10.3390/nu13020642[↩]
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