This post about the gluten challenge test should not be used as a substitute for medical advice from your doctor. This article also contains affiliate links. Please read my disclosures and disclaimers.
A friend of mine, “Karen,” had a feeling gluten was bothering her. Many years ago she eliminated gluten from her diet and began to feel better. She even tried, on several occasions, to eat gluten again and, like most people who cannot eat gluten, she immediately fell ill. All her symptoms returned with a vengeance.
Karen clearly knows gluten is no good for her, yet she can’t help but wonder if she has celiac disease or a gluten sensitivity.
Karen’s story might sound familiar to you. There are millions of people who have eliminated gluten and experienced a health turnaround. Most of them cannot fathom going back on gluten, yet none of them were tested for celiac disease or a gluten sensitivity. They are curious to know which disorder plagues them.
In order to get tested for celiac disease (or a gluten sensitivity), however, you must be eating gluten. A celiac disease blood test cannot pick up antibodies to gluten, and the small intestine cannot be damaged, without the presence of gluten.
While it is EXTREMELY important to get tested for celiac disease (and a gluten sensitivity) BEFORE eliminating gluten, many people have eliminated gluten, experienced a vast improvement in their health, and now are left wondering what disorder they actually have.
In this article, I will talk about the Gluten Challenge, what it is, how to implement it, how to decide whether or not it’s right for you, and how the outcome of the Gluten Challenge will or won’t change your approach to gluten.
Also, I’ll also discuss a few things you can do BEFORE taking the Gluten Challenge that might save you from a lot of pain and discomfort.
What is the Gluten Challenge?
The Gluten Challenge is the process of reintroducing gluten back into your gluten-free diet so you can get tested for celiac disease. (If celiac disease is ruled out, the Gluten Challenge can be used to get tested for a gluten intolerance or sensitivity as well).
You must consistently be eating gluten in order for a celiac disease test to be accurate. Without gluten, the small intestine will heal, making intestinal damage consistent with celiac disease, the gold standard test for diagnosing celiac disease, undetectable. Additionally, without gluten, a simple celiac disease blood test, which you can take at-home, cannot pick up antibodies to gluten; Gluten must be present for your body to make gluten antibodies.
While I tested positive for celiac disease via a blood test AND small intestinal biopsy in 2012, I have been tested (via blood test) for celiac disease again, several years after implementing a strict gluten-free diet. All my blood tests now come back negative for celiac disease.
A negative blood test doesn’t mean I don’t have celiac disease anymore; rather it means my celiac disease is in remission. If I began eating gluten again, the damage to my small intestine would return, as would my sour symptoms.
How Much Gluten and For How Long?
If you’re going to take the Gluten Challenge, you may be wondering how much gluten you have to eat and for how long you have to eat it.
While you should discuss these details with a doctor trained in helping patients with celiac disease, it is generally recommended that you eat three to 10 grams per day for six to eight weeks. This is equivalent to a 2-4 slices of bread each day (a slice of bread is about two grams).
However, the experts at the Celiac Disease Center in Chicago recommend eating only about two grams of gluten per day for 12 weeks, or one slice of bread.
As you can see, even the experts disagree on how much you should eat and for how long you should eat it; they do, however, agree that you need to be eating a meaningful amount of it consistently for a prolonged period of time.
The process of adding gluten back into your diet can be a painful one, especially for someone who is symptomatic to gluten.
Personally, the thought of eating gluten and sitting on the toilet for several hours each day sounds like torture because even a crumb of gluten has me running for the can!
Some people cannot tolerate eating gluten for the duration of the Gluten Challenge. It’s just too painful.
No matter how long someone can stand to eat gluten, a good doctor will still do a blood test to look for antibodies to gluten, as well as a biopsy of the small intestine, to see if any damage has occurred. Even a small amount of damage caused by gluten may be seen after just two weeks into the Gluten Challenge.
Why Take the Gluten Challenge?
I can understand why many people want to take the Gluten Challenge. They want to know, for sure, if they have celiac disease or if something else might be at play.
But what are the true benefits of a celiac disease diagnosis should you decide to take the Gluten Challenge test?
(1) Celiac Patients are Taken More Serious: For starters, people with confirmed celiac disease are often taken more seriously by friends, families, waiters and even the medical community. A gluten intolerance isn’t as widely accepted in our society and even questioned, shunned and made fun of by late night comics.
I assure you, however, a gluten sensitivity is real and serious! Unmanaged gluten sensitivities can lead to early mortality as I wrote about in this article. When someone is sensitive to gluten, their small intestine is in a chronic state of inflammation… and it’s no secret that inflammation leads to disease (and lots of it!).
(2) Celiac Patients are More Likely to be Strict about their Diets: People with celiac disease are more likely to strictly adhere to the gluten-free diet, where people with just a gluten sensitivity may be more lacksidasicle in their management of their diet (perhaps not as concerned about cross contamination or crumbs as their celiac disease counterparts are).
Again, it’s unfortunate that some people with gluten sensitivities are not as serious about their diet as someone with celiac disease. It’s mainly due to the lack of awareness and education of gluten sensitivity as a “real” disorder. I assure you, it’s real and afflicts so many people in so many ways.
(3) Researchers Get an Accurate Picture of the Number of People Afflicted with Celiac Disease: While the generally accepted number of people with celiac disease is about one percent of the population, many experts say that the rate of celiac disease is actually closer to three percent of the population. No one can know for sure, however, because many people go gluten-free before getting tested.
Interestingly enough, Researchers at Rutgers University found the rates of celiac diagnosis stagnant for the first time since 2009. However, this number is likely skewed due to people self-diagnosing their conditions and choosing to follow a gluten-free diet without FIRST having ruled out celiac disease.
When someone doesn’t first get tested for celiac disease, it becomes impossible to determine the true prevalence of the disorder and worse, researchers may conclude that the number of people with celiac disease is decreasing!
Furthermore, as the number of cases of celiac disease rise, and the “true” number of people afflicted with the disorder comes to light, so does interest from researchers, doctors, pharmaceutical companies, etc.
We need researchers to spend more money and time understanding and treating celiac disease (and even gluten sensitivities) … but they will do so only if the disorders afflict a larger percentage of the population.
(4) Celiac Disease Patients May be Eligible for Future Treatment Options or Benefits: Fingers crossed that one day there will be celiac disease treatment options beyond the gluten-free diet for those of us with celiac disease. Someone will need a confirmed diagnosis of celiac disease, however, in order to be eligible for such treatment options.
Furthermore, should additional insurance benefits become available for those with diagnosed celiac disease, those on a gluten-free diet without the diagnosis may want to take advantage of those benefits too.
In countries like Argentina, health care providers must cover the cost of alternative flours and gluten-free mixes. In the U.S. you can deduct some of the additional costs of eating gluten free from your taxes. Read this article about tax deductions for celiac disease and consult your tax adviser.
Are There Alternatives to the Gluten Challenge?
Before you put yourself through the difficult Gluten Challenge test, you may be wondering if there are alternatives to forcing yourself to eat gluten, redamage your body, and be chronically sick for 8-12 weeks!
Yes, there are some things you can do first before implementing the Gluten Challenge test.
First, discuss with your healthcare provider getting a genetic test before doing the Gluten Challenge. People with celiac disease carry one of two genes, HLA DQ2 and DQ8. About 25-30 percent of the population carries one of the genes associated with celiac disease.
Someone cannot have celiac disease unless they have one of these genes and are eating gluten. (Read: What Causes Celiac Disease?)
You can read more about how to undergo genetic testing for celiac disease in this article.
If you don’t have one of the celiac disease genes, then you cannot have celiac disease and there is no need to put yourself through the Gluten Challenge.
Additionally, one of the leading experts on gluten disorders, Dr. Tom O’Bryan, says that you can take a celiac disease blood test even if you are gluten free.
He said in a 2014 PDF titled “Reintroduce Gluten, “Clinically we see that about six out of every 10 people who are gluten-free and do a test find that the results come back positive with elevated antibodies to the peptides of gluten.”
Again, consider doing the above tests before taking the Gluten Challenge, particularly if the thought of eating gluten again is a painful one.
Is the Treatment Different for Celiac Disease vs. Gluten Sensitivity?
Here’s the kicker of it all: Whether you have celiac disease or a gluten sensitivity, the current treatment option (a strict gluten-free diet) is exactly the same.
At the end of the Gluten Challenge, the only thing you have to show for yourself is a confirmed diagnosis (or not) and a (re)damaged intestine that can take many months, even years, to heal and put back into remission.
Additionally, Dr. O’Bryan, says reintroducing gluten to your diet for the sake of testing for celiac disease may create more harm than good.
One study in the Journal of Pediatric Gastroenterology and Nutrition of the Gluten Challenge in children showed that most children were not able to consume the full recommended amount of gluten (due to roaring symptoms), and that, despite the small amounts of gluten consumed by the children, “all children showed signs of relapse at a clinical, laboratory, or histologic level.”
Would you want your child, or yourself, to suffer through a relapse?
Furthermore, let’s say you took the Gluten Challenge and tested negative for celiac disease. You then give yourself permission to eat gluten again because it’s just a gluten sensitivity. Guess what? Celiac disease can develop at anytime (and it can create a lot of damage in its path). A negative test today doesn’t mean you won’t go on to “develop” celiac disease later in life, particularly if you begin consuming the trigger food (gluten) again.
Knowing if you are genetically vulnerable to celiac disease, regardless of your symptoms and test results, puts you at higher risk of developing celiac disease. Celiac disease is a serious autoimmune condition with a multitude of damaging symptoms, many which are irreversible and life-altering.
What Should You Do?
Ultimately, deciding whether or not to take the Gluten Challenge test is a personal decision. There is no right or wrong answer.
However, before taking the Gluten Challenge, consider getting genetically tested for celiac disease first, as well as taking a simple blood test to see if gluten antibodies are detectable in your body. Many people on a gluten-free diet are still eating trace amounts of gluten that can be detected by today’s blood testing methods.
Because I was diagnosed with celiac disease before I went gluten-free, I did not have to take the Gluten Challenge test. That’s why I’d love to hear from you.
Did you take the Gluten Challenge? How did it go? Or are you considering it? Please share your comments and questions below and allow our community to help you figure things out.
Regardless of your decision, I hope you find the answers you’re looking for and peace with your decision and final diagnosis.