The diagnosis of celiac disease is a life changing one. Though the treatment of it sounds simple at first – just eat gluten free! – the realities of this lifestyle can be frustrating, difficult and met with many emotions. The topic of intentionally eating gluten while on the gluten free diet seems to be a topic that will always be relevant. There are few other “diets” out there that require the intention and dedication to exclude something from your diet for the rest of your life.
It’s no wonder that people with celiac disease at times can slip up. Consider these scenarios:
- A teenager is over at his friends house and they ordered pizza. Not wanting to draw attention to himself he thinks “I’ll just have a slice, it can’t be that bad for me”.
- Your grandmother lovingly spends the afternoon preparing her famous beef strogonoff which she proudly announces is “gluten free just for you!”. On the counter you notice a bottle of regular soy sauce and with a sinking feeling, force a smile and eat the meal.
- You’re on a first date and order a salad at a restaurant without doing the usual celiac schpeal (you haven’t gotten to that topic yet). It arrives at the table with garlic bread sitting on top. Instead of making a fuss, you place the bread on the side and hope there aren’t many crumbs left on the lettuce.
- You are shopping with your toddler and in a rush to get it done quickly, accidentally buy the regular waffles instead of the gluten free ones. You realize your mistake only after eating them for breakfast the next morning.
The struggle is real. Having celiac disease means no gluten. Ever. For the rest of your life. It is a hard reality especially for people newly diagnosed.
Many people experience dramatic and severe symptoms from gluten exposure that can leave them incapacitated for days. However, symptoms can range widely and in some people with celiac disease, they do not have any obvious symptoms when they are exposed to gluten. It is especially difficult to remain strictly gluten free without an obvious cause and effect reaction, as committing to the diet is purely based on will power. That reality is also hard to grasp for family members or friends who may not fully understand what celiac disease really means. Though well intentioned, they may not understand that you cannot just “pick off the croutons” or eat something cross contaminated.
Like with most things, knowledge is power. What REALLY happens when someone with celiac disease eating gluten.
How does celiac disease develop?
Let’s start with the basics. Often we need to review what celiac is and does in the body to fully understand why this strict treatment is so important.
To develop celiac disease, a person must first have the genes for it. Around 40% of us have the specific genotype needed for it to develop. Of those people, only 2-3% will go on to actually develop celiac disease at some point in their life. This can be caused from some form of stress on the body.
Researchers think often it is from a disruption of the bacteria in the gut (small intestine). Our gut bacteria form a protective barrier around the wall of our intestine.
Our gut is made up of a delicate lining that is only one cell thick.
By comparison our skin can be up to 30 cells thick on the soles of our feet. Normally the lining of the gut forms a very tight barrier and is extremely selective about what it allows into the body. Large proteins, bacteria, viruses and toxins are kept out. Nutrients are absorbed efficiently because they are recognized as useful to the body.
When the body is stressed or sick, the lining of the gut becomes a bit more porous or “leaky” and allows in things that wouldn’t normally get through. One culprit is gluten.
Gluten is a protein found in certain grains including wheat, barley, rye and triticale. Gluten is actually unique because it’s one protein that all humans are not able to digest well. Part of it remains undigested in the gut. Normally enzymes, chemicals that act like scissors, come and “snip” apart large proteins into tiny pieces for absorption into the body. Not with gluten. It’s very resistant to these enzymes. So when the gut becomes leaky, those large proteins can make their way into the body.
Gluten and the immune system
Then the immune system gets involved.
The function of the immune system is to keep the body safe from invaders. Those invaders include bacteria and viruses. When big proteins make their way into the bloodstream, the body thinks that they are bacteria that need attacking.
And it does. It attacks those gluten proteins. The immune system seems to be particularly aggressive to gluten proteins in genetically susceptible people. If it keeps happening, the immune system rallies more troops and develops antibodies which are like a tiny army that can attack very quickly if gluten shows up again. Which it likely will considering how prevalent gluten is in our food supply.
The immune system becomes lethargic and tired from the constant battle. It starts to create something called “cytokines” which cause inflammation in the body and damage that specifically targets the cells lining the intestine. When time and continuous gluten exposure, the damage because worse and worse. The intestine loses its ability to effectively absorb nutrients and is constantly letting through “garbage” that causes the body to become more stressed.
This means people with untreated celiac disease are susceptible to malnutrition, nutrient deficiencies, osteoporosis, anemia, infertility, other types of autoimmune diseases and certain types of cancers.
What happens in the gut doesn’t stay in the gut! Antibodies leave the intestinal cells and travel to other areas of the body like the brain and the nervous system. In fact every organ of the body can be affected. Headaches, migraines, anxiety, depression, tingling of the fingertips and foggy mind are among the most frequently experienced symptoms.
Untreated celiac disease decreases life expectancy
To put this into perspective, before the trigger for celiac disease was identified (gluten) there was no known way of treating it. In the 1930s, the mortality rate for children between the ages of 1 and 5 was around 3%. According to a UK based study at that time the mortality rate of children with celiac disease was 30%. Mortality rate was 10 times higher than average.
Once on a strict gluten free diet, life expectancy of people with celiac disease equalizes to that of a person without it.
Healing on the gluten free diet
Once gluten is removed from the diet, the body no longer needs to produce those antibodies and stops making those inflammatory substances. Over time, with a strict gluten free diet, the lining of the intestine will heal and become able to efficiently absorb nutrients again. Depending on how damaged the gut was at diagnosis, age and if you are male or female, healing can take 6 months but very likely longer. In fact around 80% of people take 2 years or longer before their intestines are completely healed.
What happens when gluten is eaten again?
Invaders! The immune system quickly checks it’s catalog system and remembers gluten as an invader. Antibodies go up again and inflammation and damage can occur. Especially if small amounts are regularly eaten.
Here’s where it get interesting. The symptoms vary widely between people with celiac disease.
Intestinal damage is not correlated to severity of symptoms.
You can have severely damaged intestines but no noticeable symptoms. Some people are completely incapacitated for days with crippling stomach pain, migraines and vomiting. Others experience flu-like symptoms, intense fatigue and brain fog. Others experience no noticeable symptoms.
Symptoms can also change with time. Some people are extremely sensitive to trace amounts of gluten during the first few years post diagnosis but may have less symptoms later on. Still others can have no symptoms at diagnosis but years later experience intense symptoms with gluten ingestion.
How much gluten is needed to cause an immune response?
“Can’t you just pick off the croutons?”
“Just try a bite, it can’t really hurt!”
“But it says ‘gluten free’ does it matter that it was made in a shared facility?”
People with celiac disease hear it all and learn early on to develop a thick skin to usually well-intentioned comments. These can sometimes make a person feel they are being irrational, fastidious, picky or even paranoid. But the truth is they are not!
A crumb of bread, or 1/100th of a slice of bread is enough gluten to cause an immune reaction in people with celiac disease.
So if you are wondering if splurging on that cinnamon bun or slice of pizza is really going to set you back….it’s probably around 100 times more gluten than your body can handle. Yes, it’s too much.
It’s hard to strictly avoid gluten! Here are some tips to staying completely gluten free.
Sticking with any long term dietary change usually comes down to one thing: support.
Support comes in different forms and can look different to each person. It is very important to have proper follow-up care to ensure you stay healthy and are encouraged to keep following this lifestyle:
- Medically from a physician (read more about what the Canadian Celiac Association recommends here)
- A dietitian that specializes in celiac disease (learn more about how I can help) initially and follow-up
Considering supporting yourself through other ways as well:
- Talk with your family and friends so they understand and will support you especially during social gatherings
- Connect with other people with celiac disease. Join your national celiac organization like the Canadian Celiac Association or the Celiac Disease Foundation and local chapter or support groups. Join celiac support Facebook groups and engage in conversation and learning.
- Seek out a counsellor or therapist that can help you work through coping with the emotions around this major lifestyle change. Eating is very personal and emotional. Many people are very sick leading up to the diagnosis and can benefit from help processing their thoughts.
- Find ways to relax and find joy everyday. Stress impacts healing and negatively affects the mind and body. Give yourself some love and appreciation.
If you found this article helpful please share with other! If you would like more personalized support, check out how I can help. For family friendly tips on gluten free nutrition check out my eBook here.
- Fasano, A (2014). Gluten Freedom.
- Freeman, H. J. (2017). Dietary compliance in celiac disease. World Journal of Gastroenterology 23(15), 2635-2639. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5403742/
- Hardwick, C (1939). Prognosis in coeliac disease: a review of seventy-three cases. Arch Dis Child 14:279–294. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1975636/