Did you go gluten-free before you were tested for celiac disease? Are you now wondering if you have celiac disease? If so, you might be considering taking the Gluten Challenge. In this article, I discuss the Gluten Challenge to help you decide if it’s right for you. I also share alternative ways to test for celiac disease once you’ve eliminated gluten. This post contains affiliate links. Please read my disclosures and consult your doctor before changing your diet.
My friend “Kate” intuitively knew gluten was bothering her, so several years ago, she eliminated gluten from her diet. She almost instantly felt better.
Kate even tried, on several occasions, to eat gluten again, and, like most people who cannot tolerate gluten, she immediately fell ill. All her symptoms returned with a vengeance, a phenomenon known as loss of oral tolerance.
Kate clearly knows gluten is not good for her. Yet, she can’t help but wonder if she has celiac disease, a genetic autoimmune disorder, or non-celiac gluten sensitivity (also referred to as gluten intolerance).
Millions of people have eliminated gluten without first ruling out celiac disease. Most cannot fathom eating gluten again.
Unfortunately, many people following a gluten-free diet were never properly tested for celiac disease before ditching gluten, and now they’re curious to know which disorder they have.
While a simple blood test can tell someone if they have celiac disease, the catch is that they must be eating gluten for the test to be accurate.
Why? A celiac disease blood test looks for antibodies to gluten; if a person isn’t eating gluten, their immune system isn’t making antibodies to gluten.
This is why I constantly urge people to get tested for celiac disease before eliminating gluten for the multitude of reasons listed in my article, STOP! Don’t Go Gluten Free Until You Read This Article.
In this article, I discuss how the Gluten Challenge works and why someone would want to take it in the first place. I’ll also discuss alternative ways to test for celiac disease once a person has already eliminated gluten.
What is the Gluten Challenge?
The Gluten Challenge is the process of reintroducing gluten after a person has been following a gluten-free diet for some time. Remember, a person must consistently eat gluten for a celiac disease test to be accurate.
Once a person with celiac disease is entirely gluten-free, they stop making antibodies to gluten, and a celiac disease test would come back negative even though celiac disease is a lifelong disorder with no cure. (Read: What are Celiac Disease Monitoring Tests, and How Do They Work?)
For example, in 2012, a blood test revealed I had celiac disease. I’ve since taken many celiac disease blood tests while following a strict gluten-free diet. All the blood tests came back negative for celiac disease. (Read: How I Healed from Celiac Disease Naturally.)
This doesn’t mean I don’t have celiac disease or have been cured; instead, it means my celiac disease is in remission.
Should I reintroduce gluten, my body would make antibodies to gluten again, my immune system would attack the healthy tissue surrounding my small intestine, and my painful and annoying celiac symptoms would return, likely with a vengeance. A blood test for celiac disease also would come back with a positive result.
The Challenge of Reintroducing Gluten
When taking the Gluten Challenge, experts recommend eating 3-10 grams of gluten daily for 6-8 weeks. This is equivalent to 2-4 slices of bread daily (a slice of bread is about two grams).
Other experts at the Celiac Disease Center in Chicago recommend eating only about two grams of gluten daily for 12 weeks or one slice of bread.
While the experts disagree on exactly how much gluten should be consumed daily, they agree that a person needs to consistently eat a meaningful amount of gluten for a prolonged period.
While it sounds easy, reintroducing gluten can be painful and problematic, especially for someone who reacts to even the tiniest exposure to gluten. For me, the thought of eating gluten again – and sitting on the toilet for several hours each day – sounds like torture!
While many people try the Gluten Challenge, many give up a few days in. It’s just too painful.
Regardless of the duration, a good doctor will still run a celiac blood test to check for gluten antibodies, and many will also biopsy the small intestine to see if any damage has occurred. Sometimes a tiny amount of gluten can cause visible damage.
Why Take the Gluten Challenge?
I’ve met dozens and dozens of people who tell me they wished they had taken a simple celiac disease test before they went gluten-free.
They want to know if they have celiac disease, and most of the time, the reason is curiosity or their desire for their diet and condition to be taken more seriously by others.
While knowing if a person has celiac disease or non-celiac gluten sensitivity won’t change whether they follow a gluten-free diet, having a celiac disease diagnosis in hand can benefit a person in many ways.
(1) Celiac Patients Are Taken More Seriously
People with celiac disease are often taken more seriously by friends, families, servers, and even the medical community.
Unfortunately, gluten intolerance, despite being a very real and serious disorder, isn’t as widely understood. And worse, it’s sometimes dismissed as a made-up or fad disorder.
(2) Celiac Patients May Be More Strict In Dietary Adherence
People with celiac disease may be more likely to adhere to a gluten-free diet, given they have a full-blown autoimmune disorder. A strict gluten-free diet will ensure proper healing and recovery.
However, people with gluten intolerance may be more lackadaisical in managing their diet and perhaps less concerned about gluten cross-contamination. They may also be more willing to cheat on their gluten-free diets.
This is concerning, given that gluten intolerance is often a precursor to celiac disease and other autoimmune diseases.
(3) More Celiac Patients Means More Research and Interest
The more people with celiac disease, the more interest will be paid to the disorder by researchers, doctors, pharmaceutical companies, food companies, restaurants, etc.
Interestingly enough, in 2020, researchers found that the number of diagnosed celiac disease cases increased by an average of 7.5 percent per year over the past few decades.
While this figure shows that celiac disease is on the rise, it doesn’t account for undiagnosed or misdiagnosed people.
Approximately 1.8 million Americans have celiac disease, but 1.4 million are unaware they have it, according to research from the Mayo Clinic.
(4) Celiac Disease Patients May be Eligible for Future Treatment Options
Fingers crossed that celiac disease treatment options beyond the gluten-free diet will one day become available for people with celiac disease.
However, these treatment options will only be available to those with confirmed celiac, making it more important than ever for people to have that firm celiac diagnosis in hand.
(5) Celiac Disease Patients Are Eligible for Tax Benefits
Finally, people with celiac disease may take advantage of tax benefits that help offset the high cost of gluten-free food. Some healthcare providers may also provide coverage for people with celiac disease seeking nutrition and dietary guidance from a dietician.
In some countries, such as Italy, the government even provides a stipend to celiac patients to help offset the high cost of gluten-free food. Should this benefit be available in the U.S., a person would likely need an official celiac disease diagnosis to qualify.
Alternatives to the Gluten Challenge
If eating gluten again is a non-starter, one can consider the following alternative Gluten Challenge alternatives.
(1) Genetic Testing
A genetic test can be a helpful tool in deciding if a person is at risk for celiac disease because a person must carry one of the two genes – HLA DQ2 and DQ8 – associated with celiac disease.
If a person doesn’t have one of the genes, they can’t have celiac disease, and there’s no need to undergo a Gluten Challenge because it’s clear that the person has a gluten intolerance, not celiac disease.
I recommend taking this simple at-home celiac gene test, which involves only a simple cheek swab, to determine if they have one of the celiac genes. A doctor can also perform a genetic test upon request.
(2) Celiac Testing
Before reintroducing gluten, a person should take a celiac disease test. Why? According to Dr. Tom O’Bryan, the leading gluten-sensitivity doctor and author of The Autoimmune Fix, six out of every ten gluten-free people who do a celiac test come back positive with elevated antibodies to gluten. (Source: “Reintroduce Gluten” by Dr. O’Bryan – this article has been archived.)
In other words, some people unintentionally eat trace amounts of gluten despite being on a gluten-free diet. Trace amounts of gluten add up over time and can still prompt a person’s immune system to react.
Is the Gluten Challenge Worth It?
Many experts say that the Gluten Challenge isn’t worth it for many reasons:
(1) The Treatment is the Same for Both Disorders
The treatment is the same regardless of whether a person has celiac disease or gluten intolerance. Both disorders require a person to follow a strict lifelong gluten-free diet.
Consider this: A person takes the Gluten Challenge only to find out they don’t have celiac disease. Should that person permit himself to eat gluten again even though gluten makes him feel sick?
Gluten intolerance is a very serious disorder and should be taken seriously by the person with the disorder and the medical community. Eating gluten with “just” a gluten intolerance can and will put a person at risk for a slew of serious, life-altering, and sometimes irreversible damage.
(2) Gluten (Re)Damages the Body
Unfortunately, the Gluten Challenge is known to cause more harm than good.
A Journal of Pediatric Gastroenterology and Nutrition study showed that most children on the Gluten Challenge could not consume the full recommended amount of gluten due to roaring symptoms.
The study also suggested that the small amounts of gluten consumed by the children caused “all” the children to display signs of “clinical, laboratory, or histologic” relapse.
Parting Thoughts
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, I recommend first taking a celiac genetic test and a celiac disease blood test.
Regardless of a person’s choices, I hope they find peace and comfort in the outcome.
There are varying guidelines from different orgs. I think I share a few recommendations and links in the article but ultimately discuss the right course of action with your dr.
How many grams, of weight, per slice of bread? Bread slices come in so many different sizes. I don’t want to eat more bread than necessary before my test.
Jenny, thanks so much for your blog. I have two copies of the gene fo celiac ( HDLAQ2–which means from both parents) and one for gluten sensitivity. I was also diagnosed with Hashimoto’s Thyroiditis about 13 years ago. I have not gone through testing for celiac but have eliminated gluten for the last almost 3 years. Initially, I did the AIP diet but have reintroduced some things so now I am gluten free, dairy free and soy free. I still experience some random issues ie I had Shingles over the Summer and then developed eczema. I also had a case of Covid but it was relatively mild since I take supplements to support my immune system.
I’m still trying to decide if it’s worth it to go through gluten challenge to get tested for celiac. I already know I have two gene alleles for it. Decisions. For now, I will pass. Thanks again for your research and work with your website. It is a blessing.
I was given diagnosis of IBS with intestinal lesions in my early 20’s after suffering for years with excruciating cramping, diarrhea, bloating and constipation which I thought everyone experienced. I was prescribed phenobarbital which did little to help. After getting married I miscarried 5 times and was finally able to carry my 6th pregnancy full term but experienced great difficulty including gaining nearly 100 pounds due to fluid retention. After delivery I experienced even more problems including extreme fatigue and sleep issues. After numerous tests I was diagnosed with a pituitary adenoma and secondary hypothyroidism. I was prescribed several thyroid medications which helped a little bit but my thyroid level had to be adjusted up and down with no consistency. I was diagnosed with osteoporosis and began taking medication with very little improvement over a 6 year period. By chance I happened to have a day when I did not have any gluten and was surprised to realize that I felt better than I could remember so I tried a week with no gluten. I felt sssooo much better. I had more energy, my gut was calm, my sense of wellbeing was 120% improved and I experienced so much less gas and bloating. My trips to and time in the bathroom decreased exponentially. When I saw my endocrinologist next my lab results indicated that my thyroid level was way too high and he thought my pituitary adenoma had enlarged or changed in some way. The MRI results indicated no change in the pituitary adenoma however there were some neurological changes. The endocrinologist conferenced with colleagues and came to the realization that I had been suffering from malabsorption due to the gluten sensitivity/celiac. Because of the miscarriages, gut issues, osteoporosis, osteoarthritis, neurological changes, depression, anxiety, headaches and skin issues the endocrinologist believes it to be celiac. I have been gluten free for 10 years now and so any of the tests would be negative. I have taken a DNA test which does not show any variant for celiac…?! The doctor told me that a person can have celiac even if they do not have the variant …? I am sharing my story with the hope that someone may find this useful and not experience the pain and disappointment of miscarriage.
Thank you Kathy. I’m glad I could help you on your journey towards good health! Hugs, Jenny
Jenny, thank you for this very informative newsletter. I really needed to hear/read this. I have been on thyroid meds for over 20 years. I felt worst after starting on thyroid meds. I complained to dr. without any relief. My health was deteriorating in my opinion, in and out of the hospital. So, l started doing my own research. A couple of years ago, I demanded full thyroid panel and found out I have Hashimoto’s. I immediately started the AIP elimination diet. I have had painful digestive issues since I was a small child. I can’t believe what a difference it made removing gluten from my diet. I was not tested for celiac disease, and wonder if I have it or sensitivity/intolerance. Taking the gluten challenge is tempting to find out conclusively; however, the reactions I have when accidentally being glutened are bad enough that I wouldn’t put myself through it. I take a pill now when I’m accidentally glutened. It helps lessen the reaction. Thanks also to you I
have the gluten tester. I hadn’t even thought about the damage eating gluten again could do. And I’m grateful there is an alternative to finding out if I actually have celiac (which I believe I do). So, thank you!!!!
Thankfully my natural path five yrs ago did a full panel food blood test because i was diagnosed with both thyroid diseases at that time snd that was my fourth one. So my dr and osteopathy who work together on my case suggested i see her. In this bloodwork panel i was extremely high for wheat and anything related plus veggies and fruits i thought i never reacted too till i started trying them one at a time for reaction. I had reactions to each veggie and fruit. I was also than told i was celiac. My heart sank i loved my desserts lol but didn’t like baking but it turned out to be the best thing for me as i had gained a lot of weight over the two yrs of trying to figure out the thyroid issue. I lost a lot of it and was at the weight my drs wanted me to be at. Now i have six autoimmune diseases Addison’s being diagnosed in march but have had symptoms since last April so nov last yr i started the paleo diet. I did it in steps as i thought going gf was hard at first. So in feb i cut out out refined sugar and processed foods and gmo. I have to say my body was thanking me till my first crisis in April and I’m now working on my leaky gut and brain with my dr osteopathy and natural path and even now my endrocologist . So i know I’m in good hands with them all. Blessed to have a traditional team that will work with my holistic team. So if u really want to know where u stand i would talk to your dr or natural path or both and get there opinions and if they say go for the challenge i would say try it because u can do better knowing which u have and get yourself even better. Getting that four hundred dollar blood test was the best money i have ever spent. Now I’m reading and buying books on all six autoimmune diseases because my fav saying is the more knowledgeable we r the more power we have to change ourselves.