If you have celiac disease and still eat gluten, you may be wondering what happens to your body, and what risks are associated with eating gluten despite your body’s rejection of the sticky protein. In this article, I’ll discuss what happens when someone with celiac disease continues to eat gluten. This post contains affiliate links. Please see my disclosures.
Celiac disease is a common genetic autoimmune disorder that affects 1 in 100 people worldwide. Every time someone with celiac disease eats gluten, their immune system mistakenly attacks the healthy tissue surrounding the small intestine. This impairs the small intestine’s ability to properly absorb and distribute nutrients and leads to a slew of annoying and serious symptoms and risks.
The only treatment option for celiac disease is for the patient to follow a strict gluten-free diet.
Gluten is a protein found in wheat, rye, barley and sometimes oats, and studies have shown that gluten leads to gut inflammation in all humans. However, humans love gluten because it adds structure to baked goods, giving cookies, cakes and pizza dough a desirable and more palatable texture.
The gluten-free diet can feel isolating, frustrating and difficult to follow the degree it’s required to be followed in order to put celiac disease symptoms into remission. A lot of people with celiac disease feel like they miss out on social events, and there is a high emotional burden to the gluten-free diet.
Following a strict gluten-free diet requires avid reading and decoding of [sometimes] confusing food labels, eating out with caution, limited food options, and oftentimes, it all comes with a hefty price tag in the form of more expensive foods, restaurant upcharges, and higher priced goods (which I might add often contain less product despite costing more).
Risks, Consequences and More
If you have celiac disease, you might be wondering if the effort required to follow a strict gluten-free diet is worth it.
And if you choose not to follow a strict gluten-free diet, are there serious enough risks and consequences that might convince you to take your gluten-free diet seriously despite the difficulties the lifestyle change brings?
Here’s what happens if you continue to eat gluten despite needing to be on a medically-necessary gluten-free diet:
(1) You continue to experience painful symptoms.
There are hundreds of symptoms associated with celiac disease and gluten disorders from digestive issues to skin conditions and brain disorders. Many of the symptoms are painful and typically grow more problematic with time when you continue to eat gluten despite having celiac disease.
Long term consumption of gluten will equate to long-term symptoms that worsen before they turn into even more serious issues and likely damage your body beyond repair.
Please note that, if you follow a gluten-free diet already, and you accidentally eat gluten (or get “glutened“), you may temporarily experience the symptoms you were trying to manage with the gluten-free diet, but your body should bounce back quickly.
For example, if I accidentally eat gluten (typically from cross contamination in a restaurant), I feel extremely bloated and have the urgent need to use the bathroom. Some people experience skin rashes, migraines, joint pain, fatigue or other symptoms associated with accidental gluten exposure.
(2) You impair nutrient intake and absorption.
Gluten is the trigger food that sets off an autoimmune reaction in the body of someone with celiac disease. Celiac disease is the only autoimmune disease in which the trigger (gluten) is known.
When a person with celiac disease eats gluten, the body’s immune system sends killer T cells to the site of the small intestine, launching an attack on what it perceives to be a foreign invader.
This attack on the small intestine is significant because the small intestine has a hefty job to keep the body healthy as it’s responsible for absorbing nutrients from food and then distributing those nutrients to every cell and organ in the body.
If the small intestine is impaired by gluten, various symptoms start to emerge. Many of the symptoms aren’t a big deal at first, but they worsen over time just like a drippy faucet will eventually cause great damage if left unattended.
One of the most important organs affected by impaired nutrition is the brain. You might experience forgetfulness, brain fog, migraines at first, and all it can lead to cognitive decline, dementia and Alzheimer’s. It’s no wonder the gluten-free diet is recommended for those with dementia, Alzheimer’s and other brain disorders.
(3) You create widespread inflammation.
Studies have proven that gluten causes inflammation in all humans, not just those with celiac disease. However, those with celiac disease will absolutely be negatively affected by continued gluten exposure as their immune systems are already hyper-triggered by gluten.
Gluten is difficult to digest, so when it enters the digestive system, large, undigested particles often end up inside the small intestine. These large food particles cannot be easily absorbed by the small intestine, and, because they have nowhere to go, they break through the intestinal lining and “leak” into the bloodstream where they wreak havoc throughout the body, typically at the weakest link in the body’s chain. For some people, their weak link might be their stomachs, for others, the weak link may be in the joints, brain, muscles, thyroid, skin, etc.
Regardless of where the inflammation occurs, you can be sure that over time your symptoms will worsen and inflammation will lead to full-blown disease.
Even people with silent celiac (also known as asymptomatic celiac) eventually experience symptoms due to the slow drip attack going on inside of their bodies. They may not have common digestive issues, but rest assured they experience other widespread symptoms that percolate over time until full-blown disease is in motion.
(4) You fuel more autoimmune disease, cancer, and early death
If you continue to eat gluten despite having celiac disease, then you are continuing to feed – and fuel – disease. For example, your chances of getting additional autoimmune disease(s) increases by 25 percent if you already have an autoimmune disease.
Additionally, the risk of developing life-threatening cancers increases when celiac disease is unmanaged or if a person with celiac disease hasn’t been diagnosed early enough. In fact, the Mayo Clinic says, “People with celiac disease who don’t maintain a gluten-free diet have a greater risk of developing several forms of cancer, including intestinal lymphoma and small bowel cancer.”
One 2020 study concluded that celiac disease was linked to a 21 percent increased risk of death from cardiovascular disease, cancer and respiratory disease. The greatest risk of early death are those in the first year after diagnosis, but researchers say the risk increase persisted for 10 years post diagnosis.
How to Stay Safe and Sane on the Gluten-Free Diet
Most people with celiac disease agree the painful symptoms, the chronic inflammation, looming disease, and early death are enough incentive for them to change their diets.
However, it’s not uncommon for someone with celiac disease to struggle to maintain a 100 percent gluten-free diet due to social pressures, hidden gluten in foods labeled gluten free, lack of support and knowledge from doctors and other care providers, along with the high-cost of gluten-free food. I write about why it’s so difficult to stick to the gluten-free diet in my article, 10 Reasons Why the Gluten-Free Diet is Hard to Stick To.
If you’re struggling to stay gluten free despite having a celiac disease diagnosis, I have a few strategies and tips for you.
Get Help: This disease is isolating enough, and there are plenty of qualified people who can help you and hold you accountable. I find that once someone knows how to prepare a few meals and eat at a few safe restaurants, they can build on that knowledge and be very successful at adhering to the necessary lifestyle change medically required of them.
If you’re looking for help, please visit my Recommended Celiac Practitioner page for a list of great dieticians and health coaches specializing in gluten disorders.
Live Your Life: I find there are many ways you can still live your life without eating gluten. It just requires you to plan ahead of time when traveling, and perhaps staying in a VRBO vs. a hotel so you can prepare and store your own food while away from home.
You can still eat out, but you may have to adjust where you eat and the kinds of dishes you order. For example, pizza is highly cross contaminated with gluten and is not safe even if the restaurant has gluten-free crust; but ordering a piece of grilled fish and a baked potato are probably a safer option. (You can always enjoy pizza at home.)
If you still live your life and do things that feel “normal” to you, your chances of success with the gluten-free diet will increase. When you deprive yourself of “normal” foods and a “normal” life, that’s when you’ll be most at risk of giving up on the gluten-free diet altogether.
Find Gluten-Free Friends: I find the gluten-free lifestyle is much more fun with gluten-free friends. Look on Facebook and Meetup to find a crew of gluten-free friends near you. The National Celiac Association may have a celiac support group near you where you can meet and bond with new friends who “get” what you’re going through.
Find Your Purpose/Why: You have one body in this world, so find a reason to treat it right. Do you want to be here to grow old with your spouse or see your children have children and so forth? Do you want to be active and travel in retirement? Do you want to live symptom free? Do you love hiking, fishing, biking, and being outdoors? Do you want to live a full, long life? Do you want to live long and die quickly or live in a stage of suffering and dying for years? Eating gluten can rob you of walking, cognitive function and more, making it ever-more important to take your health seriously before celiac disease turns into something much more serious and irreversible.
Reminder: If you suspect you have celiac disease, have a first-degree relative with celiac disease, and/or know you carry the celiac gene, please get regularly tested for celiac disease. I highly recommend this at-home celiac disease test.