Celiac disease is a disease of the immune system that is said to be triggered by gluten, the protein in wheat products. It affects a few million people in the U.S. each year. Most who are diagnosed will go on a gluten-free diet, as that is currently the only treatment doctors know of which leads to healing.
Because of celiac disease and the fact that there is a consumer demand for gluten-free products, these processed foods are more commonly available in mainstream grocery stores. So, it is easier to maintain the diet these days, but definitely not easy.
What is easy, is going to a restaurant, ordering a gluten-free meal, and getting a meal that may not be quite gluten-free. There is always the chance that a meal will be prepared in an area where there is wheat flour, for example, or say a pizza-cutter that was used on a wheat crust before it was used on your gluten-free pizza.
When a celiac patient ingests gluten
If a patient chooses not to go on a gluten-free diet, or isn’t committed to it 100 percent, the intestines remain inflamed. Other medical issues can arise. Also, many studies have shown that a thorough elimination of gluten does not heal the intestines completely in all cases.
Some doctors feel that this is because the patient didn’t manage to avoid all gluten. Others feel there are more variables at play.
It is not clear if the diet doesn’t work in those cases, or if there is cross-contamination occurring where the patient is getting some gluten in their diet anyway.
Then there is also the possibility that when studies are conducted and data is being collected, that people aren’t entirely honest about their gluten ingestion, or simply don’t realize they’ve ingested this very common ingredient.
According to Rare Disease, gluten has been shown to cause villous atrophy, which is the flattening of the villi in the intestines. Gluten is one agent known to cause this. The intestines require the villi to absorb nutrients and minerals. Without functioning villi comes malabsorption and nutritional deficiencies.
Damage to the villi can begin as soon as 3 hours after eating gluten. It requires more than one meal to damage them completely.
Villi damage is one type of damage going on in the intestines. Other types of intestinal damage invite further medical dilemmas.
Breakthroughs in research
A renowned doctor has changed traditional thinking about autoimmune diseases. He is Massachusetts General Hospital’s Alessio Fasano, MD, head of the MGH Center for Celiac Research and Treatment.
Along with his team, he found that the major problem in celiac and other diseases is gut permeability. Gluten enters the body to damage the intestines, causing inflammation, among other problems.
Gut permeability, or leaky gut, is when damage to the intestines causes fissures, or tears, where toxins can get into the bloodstream. Those damaged areas leave the internal environment unprotected. Also, needed nutrients can’t be filtered.
Interactions between gluten, genes, infections and possibly gut bacteria contribute to celiac disease. Catalysts for celiac can be pregnancy, surgery, viral infections or severe emotional stress.
Damage to the intestines (by gluten and other agents) leads to gut permeability, which potentially leads to celiac and all sorts of other problems. When healing doesn’t occur, in time it can lead to lymphoma.
Celiac disease can lead to:
- Loss of bone density (lack of mineral absorption)
- Intolerance to other foods, such as dairy
- Cancer, such as intestinal lymphoma and small bowel cancer
- Neurological problems (including depression, anxiety, brain fog)
Reducing the risk of cancer
Fasano is an enthusiastic advocate of strict adherence to a gluten-free diet. He says that maintaining a gluten-free diet is more likely to heal the intestines, and does reduce a patient’s risk for cancer.
He is conducting a long-term study on changes in a person’s body over their lifetime, that may affect how celiac disease begins. The initial findings are that months before someone develops celiac, there are bacterial changes in the intestines.
Ideally in the future, he says the goal would be to re-establish balance in the gut. The healing of intestinal injury reduces the risk for cancer. He advises that people who are experiencing signs of celiac disease should get tested and go on a gluten-free diet.
In 2013, he did a small study on 17 subjects who had persistent intestinal damage after having gone gluten-free. For the study, they had the subjects eat a diet they called the
“Gluten Contamination Diet.” They basically eliminated all processed foods, and some cured meats, such as ham and bacon. After 3 to 6 months, 14 out of 17 healed their non-responsive celiac.
Doctors say that once someone has gone gluten-free, it can take up to 2 years for mucosal healing. This is when the gut heals from the damage done to it over the years.
There have been varying definitions of mucosal healing. Whether it means complete healing, or just being free of ulcers, is up for debate.
Sometimes it can take only 6 months for a patient to experience healing after eliminating gluten. Other patients aren’t so lucky. Their bodies are resistant to healing and they end up having refractory celiac disease.
This stubborn disease affects 2 to 5 percent of celiac disease patients. They experience what researchers call persistent villous atrophy. The gluten-free lifestyle isn’t enough to kick it to the curb.
According to doctors, this is more likely to occur in older people who weren’t diagnosed early on in life. Certain foods have been attacking their intestines for a long time. These are the people who are at risk for lymphoma.
More and more studies are showing that persistent villous atrophy (or celiac that fails to heal while gluten-free) is more common than originally thought.
The process of damage
Researcher Benjamin Lebwohl, MD, MS, at the Celiac Disease Center at Columbia University describes a process of damage occurring with gluten intake, then repair. The intestinal villous can repair themselves, but then get continually damaged again when the wrong foods are eaten.
When that process repeats over and over there can be big problems, such as cancer.
Lebwohl makes the point that there is no consistent pattern amongst doctors to require follow-up intestinal biopsies in patients who’ve gone gluten-free. There is conflicting medical opinion about whether it is necessary. It makes sense to do it though, since some people don’t respond to the diet, then are at risk for further medical problems.
He believes there is evidence that there should be a mandate to perform follow-up biopsies to make sure patients are healing from the diet.
One patient was diagnosed with celiac and felt better at first after eliminating gluten. She then began having similar symptoms that she had before she went off it, like cramping, bloating, constipation and fatigue. She had been off it for a year and felt frustrated that after her diligence she might be back to square one.
After her initial diagnosis and blood tests her doctor told her to research celiac and go off gluten.
After the year of being strict with her diet she went to see another doctor and was able to get another biopsy. This revealed that she had healed partially. She didn’t know what to do. She was thinking there might be other food intolerances causing problems.
Often times, people feel they are on their own when figuring out these problems. They can feel alone when there is not a specific medical answer for them.
Some people believe that in this situation, there is some gluten sneaking in there somewhere, whether in food additives, coffee creamer, or foods made in a facility that processes gluten, as a few examples. It is hidden in many, if not most processed foods that don’t specifically advertise to be gluten-free.
At any rate, since being passive about persistent intestinal issues is risky, not to mention painful, it is good to look into it.
The risk of cancer has to do with individual reactions to intestinal damage, inflammation and nutritional deficiencies. Obviously an older or more fragile person will probably be more vulnerable to disease.
When damage is chronic
Sometimes patients go through this process of damage, repair and damage again, without having been diagnosed with celiac. Then they are hit with a cancer diagnosis. They simply don’t find out about the celiac until more severe symptoms appear.
One older man didn’t realize he had celiac, just pushing symptoms aside, as can be so easy to do. His tightly knit family was distraught by his seemingly sudden, advanced diagnosis of cancer. He had probably had celiac disease for many years. It was too late for a gluten-free diet to fix what had been going on in his body for too long.
After he passed away, his family, determined to learn from their loss, got tested for celiac to try and catch anything early on. Celiac, being an autoimmune disease, can run in the family.
While some doctors are convinced that persistently occurring celiac disease happens because of accidental exposure to gluten, others believe that additional sensitivities are at work.
Lesser known diet options
Some people afflicted with this disease, who got only some relief from going gluten-free, have eliminated dairy also. This has fixed the problem for certain people.
Others find they are sensitive to processed foods and grains also. Eliminating processed foods and grains, essentially going on a paleo diet, has produced healing and gotten rid of symptoms for many who’ve dedicated themselves to it.
Though in some people’s eyes that kind of lifestyle takes the willpower of an Olympic athlete, these patients think it’s worth it to feel great and be free of the awful symptoms that have plagued them for as long as they can remember.