Maybe you went gluten free before you got tested for celiac disease and you’re considering taking the Gluten Challenge, a challenge that pushes people already on the gluten-free diet to eat gluten again in order to be tested for celiac disease. In this article, I’ll discuss the Gluten Challenge in detail as well as whether the effort of the challenge is worth the reward. This post contains affiliate links. Please read my disclosures and consult your doctor before making changes to your diet.
A friend, “Kate,” 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 tolerate gluten, she immediately fell ill. All her symptoms returned with a vengeance.
Kate clearly knows gluten is no good for her, yet she can’t help but wonder if she has celiac disease or a gluten intolerance.
Kate’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 gluten sensitivity first, and they’re now curious to know which disorder they actually have.
In order to get tested for celiac disease (or gluten intolerance), you must be eating gluten. A celiac disease blood test cannot pick up antibodies to gluten, and the small intestine cannot become damaged, without the presence of gluten.
While it’s important to get tested for celiac disease before eliminating gluten for a number of important reasons which I detail in my article, STOP! Don’t Go Gluten Free Until You Read This Article, 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, how it works, and if it’s something that’s right for you.
What is the Gluten Challenge?
The Gluten Challenge is the process of reintroducing gluten back into your gluten-free diet for the purpose of getting tested for celiac disease.
You must consistently be eating gluten in order for a celiac disease test to be accurate. Without the presence of gluten, the immune system does not make antibodies to gluten.
In 2012, a blood test revealed that I had celiac disease. I’ve since been tested (via blood test) for celiac disease again, after several years on a strict gluten-free diet. These subsequent blood tests all came back negative for celiac disease.
This doesn’t mean I don’t have celiac disease or have been cured; rather it means my celiac disease is in remission. If I began eating gluten again, my body would begin making antibodies to gluten again, my immune system would attack the healthy tissue surrounding my small intestine again, and my painful and annoying celiac symptoms would return once again.
Reintroducing Gluten
When undertaking the Gluten Challenge, some experts recommend that you eat 3-10 grams of gluten per day for 6-8 weeks. This is equivalent to a 2-4 slices of bread each day (a slice of bread is about two grams). However, other 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.
When the experts disagree on exactly how much gluten you should eat on any given day, they do agree that you need to eat a meaningful amount of gluten 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!
This is why 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 celiac blood test to look for antibodies to gluten, as well as biopsy of the small intestine to see if any damage has occurred. Sometimes, even a small amount of damage caused by gluten could be seen after a short time on the Gluten Challenge.
Why Take the Gluten Challenge?
Most people take the Gluten Challenge because they want to know, for sure, if they have celiac disease. This is because having an official celiac disease diagnosis could be beneficial in the following ways:
(1) Celiac Patients are Taken More Serious: People with celiac disease are often taken more seriously by friends, families, waiters and even the medical community. Unfortunately, a gluten intolerance, despite being very serious, isn’t as widely understood and therefore often dismissed as a made up disorder.
(2) Celiac Patients are More Likely to be Strict about their Diets: People with celiac disease are more likely to adhere to the gluten-free diet, where people with just a gluten intolerance may be more lacksidasicle in the management of their diet and perhaps not as concerned about something like gluten cross contamination.
(3) More Celiac Patients Means More Research and Interest: 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.
Unfortunately, researchers at Rutgers University found the rates of celiac diagnosis stagnant for the first time since 2009, which might be due to the fact that people go gluten free before first ruling out celiac disease. When someone doesn’t first rule out celiac disease, it becomes impossible to determine the true prevalence of the disorder.
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, food companies, restaurants, etc.
(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 people with celiac disease. However, these treatment options will only be available to those with confirmed celiac.
Furthermore, people with celiac disease might be able to take advantage of tax benefits. In some countries, like Italy, the government provides a stipend to celiac patients to help offset the high cost of gluten-free food.
Alternatives to the Gluten Challenge
Before you put yourself through the difficult Gluten Challenge test, you may be wondering if there is a better way to figure out if you have celiac disease beyond forcing yourself to eat gluten again.
Genetic Testing:
Take a genetic test before implementing the Gluten Challenge because you must have one of the two genes associated with celiac disease – HLA DQ2 and DQ8 – in order to have celiac disease. If you don’t have one of the genes, there’s a slim chance you have celiac disease and there’s no need to torture yourself with the Gluten Challenge.
You can ask your doctor for a genetic test, or take matters into your own hands and take this simple at-home celiac gene test, which involves only a simple cheek swab.
Celiac Testing:
Before reintroducing gluten, you could also take a celiac disease test, just to see what it says. Dr. Tom O’Bryan, a leading gluten sensitivity doctor and author of The Autoimmune Fix, says 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.”
Why? He says you might be eating trace amounts of gluten despite being on a gluten-free diet, and these trace amounts of gluten add up over time and causes your body to make antibodies.
Treating Gluten Disorders
While it might be nice to know if you have celiac disease vs. gluten intolerance, the kicker is that the treatment is the same. Both disorders require a strict lifelong gluten-free diet without exception.
Plus, 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 showed that most children put on the Gluten Challenge 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.”
Furthermore, if you took the Gluten Challenge, but still tested negative for celiac disease, would you give yourself permission to eat gluten again because it’s just a gluten intolerance? Did you know that gluten intolerance is a very serious disorder too? Eating gluten again can put you at risk for all sorts of serious, life-altering and reversible diseases.
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 first taking a celiac genetic test, as well as a celiac disease blood test to see if gluten antibodies are, by chance, detectable in your body since many people on the gluten-free diet may still be eating trace amounts of gluten.
Regardless of your decision, I hope you find the answers you’re looking for and peace with your decision and final diagnosis.
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.