Gluten Intolerance vs. Celiac Disease

Summary: Gluten intolerance and celiac disease have one main thing in common with each other, which is that eating gluten triggers the symptoms for each condition.

Other than that, gluten intolerance and celiac disease are very different conditions. Both are part of the broader category of gluten-related disorders.

Celiac disease has a well-established diagnostic procedure.

Gluten intolerance, also known as "non-celiac gluten sensitivity", has a less straight-forward diagnosis.

Treatment, avoidance of gluten, is the main treatment for both celiac disease and gluten intolerance.

The many different symptoms of gluten intolerance and lack of specific markers for diagnosis purposes, present opportunities for further study of this increasingly prevalent condition.

What is Gluten Intolerance?

Gluten intolerance or Non-Celiac Gluten Sensitivity (NCGS) is a term used to describe a condition where people have a "reaction" to eating gluten or gluten-containing foods.

(More on what a "reaction" is below.)

You might hear names like Non-Celiac Wheat Sensitivity (NCWS), Gluten Sensitivity (GS), or Gluten Intolerance (GI) used interchangeably. They're basically the same thing.

They’re just different names for gluten intolerance.

Gluten intolerance is a condition that is becoming more and more common.

It has a prevalence of about 0.5% - 13% worldwide and is more common in women(1).

Because the research is ongoing and there are still some unanswered questions related to this condition, people can go years without a correct diagnosis.

This can lead to taking medications that aren't right for you; or restricting your diet or other aspects of your lifestyle that aren't helpful. At worse, these can be harmful and at best, they can cause lost time or money.

This was my experience for years before I was diagnosed.

Signs of gluten intolerance

There's a lot of different signs and symptoms of gluten intolerance.

It's likely that you'll have symptoms that are specific to your body. Which means that it's very hard to diagnosis gluten intolerance on symptoms alone because people vary so much in the type of symptoms they have and how severe the symptom is.

Symptoms of gluten intolerance involve intestinal and extra-intestinal symptoms.

• Intestinal symptoms refer to symptoms that are "of or in" the intestine. An example would be bloating or diarrhea.
• "Extra-intestinal" refers to "outside" the intestine, ie symptoms that don't involve the intestinal tract. Example of these can be join pain, fatigue or "brain fog".

Here are some of the common symptoms of gluten intolerance:

• Bloating - sometimes called "gluten bloat"
• GERD (Gastric Esophageal Reflux Disease) or reflux
• Abdominal pain
• Indigestion (also called "dyspepsia")
• Diarrhea
• Nausea
• Constipation
• Extra-intestinal manifestations such as canker sores and chronic skin conditions like, dermatitis herpetiformis
• Ataxia
• Inability to concentrate on work
• Inability to memorize various things
• Non-specific symptoms including "brain fog"
• Depression
• Anxiety
• Fatigue

Gluten intolerance symptom checklist (PDF)

How to test for gluten intolerance

Recent research shows us that the diagnosis of gluten intolerance is complicated at best.

Gluten intolerance may be immune-related but there is currently no diagnostic test from a reliable biomarker (1, 2).

Unlike celiac disease where the gold standard way to get a definitive diagnosis is a biopsy of the small intestine while consuming a gluten-containing diet, there is no definitive test for gluten intolerance (1,2).

Not only that, but there’s a lot of overlap in symptoms between gluten intolerance and other gastrointestinal disorders, making a clear diagnosis even more difficult.

Plus, here's the kicker: you can have gluten intolerance and not have celiac disease or wheat allergy(2).

Combine all this with the fact that the pathophysiology of gluten intolerance is largely unclear, including what triggers this condition, all of this can make it really tough to figure out what's the cause of the non-specific gastrointestinal symptoms.

One way to test for gluten intolerance from the research involves cutting out gluten and monitoring for symptoms after re-introduction of gluten.

Catassi et al (2015) recommend a double blind placebo controlled gluten challenge, including a one-week challenge followed by a one-week wash-out of strict gluten-free diet and a new crossover to the second one-week challenge (2).

This is the most reliable procedure so far for diagnosing NCGS for sure but it doesn't really work for real life.

Great for clinical trials, but hello?

With your busy life, going from Zooms meeting to a kid pick-ups with making suppers and lunches and never-ending(!) snacks in between, it's too much.

You don't have time for clinical-trial-like protocols here. You still have to live.

So. What to do?

Rule Out Celiac Disease

We know you can't rely on symptoms alone to tell the difference between celiac disease and gluten intolerance.

That's because both gluten intolerance and celiac disease can cause similar symptoms in people.

So the first step to figuring out if what you have is gluten intolerance is to test for celiac disease.

Most if not all of the published research to date recommends that gluten intolerance be diagnosed after ruling out celiac disease.

See below for how to test for celiac disease.

Eliminate Gluten from Your Diet

But wait. There is another option if you don't want to wait.

If you're like me though and want relief from your symptoms yesterday, you don't necessary have to wait to get a biopsy.

Many clinicians will recommend an “open gluten challenge”, which is what my gastroenterologist recommended.

This is really the most practical way to do it: you simply cut out gluten for 2 weeks and see if your symptoms improve.

This way is of course, based on your ability to follow a gluten-free diet.

For me, I was pretty wishy-washy with the gluten-free diet until I made it stick. For good.

Do NOT go gluten-free alone. Join me to get all the gluten-free recipes or get support from a trusted healthcare provider.

If you want to know more about out how I finally cut the gluten, check out: How to Relieve Bloating from Gluten Intolerance

Treatment for Gluten Intolerance

The treatment for gluten intolerance is a gluten-free diet.

For me, going gluten free was the only way I could:

• Come off all my medications for reflux
• Get rid of my daily, debilitating nausea
• End my embarrassing burping
• And never have a severely bloated stomach again

This was my own personal experience and yours might be different so always check with a trusted healthcare provider before making drastic changes to your lifestyle, especially when it comes to medication.

But choosing a healthier diet and one that's gluten-free is something you can do right now.

Get started by grabbing my Gluten Free Diet Plan for Beginners (PDF download).

And be sure you're signed up for email updates so you get the weekly emails from me and we can be on this gluten-free lifestyle together!

Prevention

At the time of writing this, the "prevention" part of gluten intolerance is focused around preventing the symptoms.

Which really goes hand-in-hand with the treatment: stopping the effects of eating gluten before they even start.

What would be even better is to prevent the intolerance in the first place!

But like most things when it comes health conditions, it stands to reason: you can't truly prevent something if you don't know the cause.

And as for where we are right now, the mechanism or "cause" of gluten intolerance remains a mystery.

In their review article, Casella et al (2018) discuss, among other things, that progress is being made in starting to uncover some of the mechanisms behind the symptoms that occur with gluten ingestion in people with gluten intolerance.

For example, in a case report by Rostami et al (2015), the researchers discuss how the blanket diagnosis of Irritable Bowel Syndrome (IBS) in patients with symptoms like dyspepsia (or indigestion), constipation or diarrhea, doesn't address a gluten (or lactose) intolerance caused by an infection in the gut.

The site of infection can produce different symptoms. For example, if the virus or bacteria was present in the small bowel or colon then IBS-like symptoms were more likely.

If the infection was in the stomach or duodenum (the first part of the small intestine), then functional dyspepsia (indigestion) was more likely.

Dyspepsia is a fancy name for indigestion and isn't actually a symptom itself but refers to pain or discomfort in the upper abdomen that occurs after eating. Symptoms of dyspepsia include bloating, discomfort, pain, nausea, feeling too full and gas.

In these cases, the researchers note that the symptoms that point to an IBS diagnosis, are actually covering up a gluten sensitivity.

As a result, the patient doesn't get the right treatment (ie, they don't get support with a gluten-free diet.)

More research is ongoing to try and figure out the cause of gluten intolerance and get easier and more specific ways to help clinicians diagnosis it in their patients.

What is celiac disease?

Celiac disease is a gluten-induced immune mediated condition that causes inflammation of the lining of the intestine over time.

Celiac disease is being diagnosed more and more in recent years.

This is in part related to better awareness about the condition and more sensitive and specific blood tests for diagnosis.

But it also reflect a true increase in the absolute prevalence of the disease. That is, more people have it. (5).

Symptoms

Although most typically, patients will present with intestinal distress cause by gluten, patients may also have "extra intestinal" symptoms, or symptoms that occur outside of the intestine.

This suggests that celiac disease is actually a "systemic" disease, or one that affects the whole body(6).

Diagnosis

The diagnosis for celiac disease is more well studied and reliable than what we have now for gluten intolerance.

The "gold standard" way to get a definitive diagnosis of celiac disease is a biopsy of the small intestine.

You still eat your typical, gluten-containing diet before this procedure is performed.

The biopsy will be able to show if you have the hallmark damage to your intestine or not.

There is also a blood test that your doctor can do which look for increased levels of certain antibodies in your blood. Finding these elevated levels of these antibodies could indicate an immune reaction to gluten.

Another more recently available option uses genetic testing. Certain human leukocyte antigens (HLA-DQ2 and HLA-DQ8) can be used to rule out celiac disease.

If you're interested in more about diagnosis of celiac disease, check out this article from the Mayo Clinic.

Treatment

The treatment for celiac disease is following a strict, gluten-free diet for life.

People with celiac disease need to be careful about even trace amounts of gluten, such as those that can come from cross-contamination.

For example, rolled oats do not contain gluten as part of their natural plant structure. As a result, are technically, gluten-free.

However, because oats are often grown in fields near or next to wheat fields, the oats can become "contaminated" with gluten.

This happens when the wind or even birds spread gluten protein, in the form of wheat particles, on the growing oats.

Other places cross-contamination can happen are:

• Processing of the oats - unless certified gluten-free, oat products could come in contact with wheat or other gluten-containing grains during processing at a food plant
• In the home - cross contamination of gluten-free products can easily happen in house: muffin tins can have trace amounts of gluten on them if not exclusively used for gluten-free baking; the toaster can be a source of gluten from previous toast-making and same goes for cutting boards
• At restaurants - many restaurants will offer "gluten-friendly" options, which is different than "gluten-free". I've been at restaurants where the server will ask me: "is it a preference or an allergy?" I let them know I have gluten intolerance and ask for recommendations for what to order. But if it's a decent establishment, they will make note of the allergy (if celiac disease) or intolerance so the kitchen staff is aware. I've also had servers tell me what the kitchen will do, now that they have this information (ie, use separate prepping station, different knifes, etc) to avoid cross-contamination. This will vary by restaurant so always be clear and kind with your server about what you need and if possible, check the restaurant's menu online before you go.

With a diagnosis of celiac disease, it's important to be followed by a health care professional who can continue to support you staying on a gluten-free diet and monitor for any co-morbidties (5).

Prevention

Unfortunately, as of right now, there is no known way to prevent celiac disease.

For children who are at higher risk for developing celiac disease, there may be steps parents can take to reduce the likelihood of it developing.

The Mayo Clinic put out a great great (and brief) article that addresses this question which you can check out here if you're interested.

What's the difference between gluten intolerance and celiac disease?

Gluten intolerance and celiac disease are very different conditions.

Gluten intolerance (and the whole spectrum of gluten-related disorders) is probably more complicated than we know right now.

In many ways, we're just scratching the surface in trying to better understand this increasingly prevalent condition.

There are varying degrees of symptoms that are related to the ingestion of gluten in individuals; there's no reliable biomarker or easy diagnostic test yet for gluten intolerance; and individual factors likely play a role in the severity of gluten sensitivities in general.

Celiac disease, on the other hand, has well-defined and well agreed upon diagnosis criteria, clear treatment protocols, and is generally a well-accepted condition by the public.

Celiac disease and gluten intolerance may be related by the common thread of the ingestion of gluten triggering symptoms but they are very different conditions.

For example, if you have gluten intolerance but not celiac disease, you won't get the same intestinal damage that people with celiac disease get.

And you won't test positive for celiac disease or wheat allergy with an intestinal biopsy.

As more research is done in the area of gluten-related disorders, personally, I hope that a reliable way to test for gluten intolerance is found.

So many people are mis-diagnosed by well-meaning health care professionals as having IBS or simple GERD (like I was), and go through years of discomfort and pain, trying to figure out what the heck is causing their symptoms and what to do about it.

I spent years in pain, discomfort and confusion too.

Not to mention, taking medications that weren't helping.

Going gluten-free helped me get control back to my eating, my health and my life.

If you think you have a sensitivity to gluten and are ready to find relief like I was, get started going gluten-free today.

Don't wait like I did!

Start with this list of Foods to Avoid for Gluten Intolerance so that you can get the majority of gluten out of your diet ASAP.

Can you go from gluten intolerance to celiac disease?

There is no definitive answer for this question but it has been shown that people can have one (or more) gluten-related disorders.

This could mean that someone could have gluten intolerance and then be diagnosed with celiac disease.

However, because celiac disease involves the activation of the immune system and the damage to the lining of the intestine, which gluten intolerance does not, the only way to know for sure, is the biopsy of the small intestine.

As I said above, because there is no easy and straight-forward way to diagnosis gluten intolerance, it's recommended to first rule out celiac disease and then base the diagnosis on the symptoms.

Bottom Line on Gluten Intolerance vs. Celiac Disease

If you think you might have celiac disease or gluten intolerance, talk to your doctor.

If you want to start on a gluten-free diet now to start feeling better, start here:

CHEAT SHEET: foods to avoid with gluten intolerance

Getting tested for celiac disease - and finding out that I didn't have it - was the thing that finally put me on the path to feeling better.

Going gluten-free for life and eating healthy is possible. Be sure to sign up for email update so that you get all the healthy and gluten-free recipes from me every week.

I'll see you on the inside!

~April

References:

1. Asri N, Rostami-Nejad M, Anderson RP, Rostami K. The Gluten Gene: Unlocking the Understanding of Gluten Sensitivity and Intolerance. Appl Clin Genet. 2021;14:37-50. https://doi.org/10.2147/TACG.S276596

2. Catassi C, Elli L, Bonaz B, Bouma G, Carroccio A, Castillejo G, Cellier C, Cristofori F, De Magistris L, Dolinsek J, Dieterich W, Francavilla R, Hadjivassiliou M, Holtmeier W, Körner U, Leffler DA, Lundin KEA, Mazzarella G, Mulder CJ, Pellegrini N, Rostami K, Sanders D, Skodje GI, Schuppan D, Ullrich R, Volta U, Williams M, Zevallos VF, Zopf Y, Fasano A. Diagnosis of Non-Celiac Gluten Sensitivity (NCGS): The Salerno Experts’ Criteria. Nutrients. 2015; 7(6):4966-4977 (downloaded)

3. Casella G, Villanacci V, Di Bella C, Bassotti G, Bold J, Rostami K. Non celiac gluten sensitivity and diagnostic challenges. Gastroenterol Hepatol Bed Bench 2018;11(3):197-202).

4. Rostami K, Rostami-Nejad M, Al Dulaimi D. Post gastroenteritis gluten intolerance. Gastroenterol Hepatol Bed Bench. 2015;8(1):66-70.

5. Meijer C, Shamir R, Szajewska H, Mearin L. Celiac Disease Prevention. Front Pediatr. 2018;6:368. Published 2018 Nov 30. doi:10.3389/fped.2018.00368

6. Leonard MM, Sapone A, Catassi C, Fasano A. Celiac Disease and Nonceliac Gluten Sensitivity: A Review. JAMA. 2017 Aug 15;318(7):647-656. doi: 10.1001/jama.2017.9730. PMID: 28810029.