You may have celiac disease without knowing it
Reseachers have found that at least four times as many as those who have been diagnosed with celiac disease have it. Doctors and the public need to be more aware of the vaguer symptoms of this disease, they say.
Do you feel tired or sluggish even after a long night’s sleep?
Are you suffering from abdominal discomfort, but unsure of the cause?
These can be symptoms of celiac disease. Researchers have now found that many people could suffer from the disease without being aware of it.
Inflammation of the intestines
Celiac disease is a chronic illness which causes the sufferer to become ill from proteins found in wheat flour, barley and rye.
When someone with celiac disease eats food containing the protein gluten, their immune system reacts, leading to an infection which destroys the intestinal villus over time.
This is problematic as intestinal villi are crucial for the uptake of nutrition. These tiny finger-like projections made up of cells line the entire length of your small intestine. They absorb nutrients from the food you eat and shuttle them into your bloodstream.
Currently the only treatment is to avoid gluten completely. Recently, a pill created to protect the body against gluten has been tested and is showing promising results. It will, however, take time before a medicinal solution against celiac disease becomes available, as reported by sciencenorway.no in 2021.
At least four times as many
Researchers of the Trøndelag Health Study (HUNT) have analysed 56,000 blood samples to determine how many are affected by the disease.
“Very few of those with celiac disease actually have the diagnosis. We know that there are at least four times as many affected by the disease as those who have been diagnosed, and we have discovered many who have the disease without knowing it,” researcher Eivind Ness-Jensen says in an interview with the Norwegian Celiac Association. He is the project leader of the celiac disease project HUNT.
Higher incidence than expected
Earlier, researchers believed that between 1 and 2 per cent of the population have celiac disease.
Researchers for HUNT analyse the blood samples only of those without a diagnosis. Between 1 and 2 per cent of these samples are positive for celiac disease.
If those that have already been diagnosed are included in the sample, the incidence is closer to 2 per cent, according to Ness-Jensen.
The findings are currently being reviewed and are expected to be made public in autumn 2022.
- READ: A pill for celiac disease will come soon, researchers believe
- READ: New pill against celiac disease protects fully against the effects of gluten
First good overview of celiac disease incidence
The majority of earlier research has focused solely on persons diagnosed with celiac disease and has not considered an entire population over time.
HUNT will be the first study which can offer an overview of celiac disease incidence in a population.
Additionally, researchers have utilised data and tests from over 30 years ago to study the disease.
HUNT began already in 1984. Data from the fourth HUNT study from 2017 – 2019 are currently being analysed.
Tissue samples from the instestine
When an analysed blood sample indicates the presence of the disease, researchers contact the person who gave that sample.
The person in question is then called in for further examination using gastroscopy. During the examination, tissue samples are collected from the duodenum. The results will either confirm or rule out the diagnosis.
Many of those who are contacted have suffered from various ailments over an extended time, Ness-Jensen tells the Norwegian Celiac Association.
Most people do not have abdominal pains
Most have been bothered by feeling tired and sluggish.
Typically, they also have iron and vitamin deficiencies.
Most of those diagnosed experience neither abdominal pains nor diarrhea.
Ness-Jensen believes that increased awareness of the vaguer symptoms of the disease amongst doctors and the public is important.
He notes that more doctors test for celiac disease now, but often only if the patient cites abdominal issues.
Moved knowledge boundaries
In the late 1980s, researchers at the University of Oslo discovered which genes are involved in celiac disease. Later, they uncovered the mechanisms of how the disease affects the body.
“We now have very good insight into the disease. Many of our findings have been verified in other laboratories across the globe and are widely cited in international research. It gives us faith that we have pushed the boundaries of what we know and that this knowledge has withstood the test of time,” Ludvig M. Sollid said, in an interview with sciencenorway.no in 2020.
Even though researchers now know a lot more about celiac disease than other autoimmune diseases, there is still much that is not fully understood.
We know that the disease is partially hereditary. Those diagnosed with celiac disease have special tissue types, called HLA-DQ2 or HLA-DQ8.
However, even if you are born with an inherited predisposition to develop celiac disease, it is far from certain that you will develop it.
Those with celiac disease are born with a completely normal immune system. However, the immune system can suddenly start attacking gluten. In most cases, this occurs in childhood, although many are not diagnosed until they have reached adulthood.
Research has shown that once the immune system’s reaction has started, the disease is there, and you have it forever.
- READ: How likely is it that food can give you an autoimmune disease like diabetes, celiac disease or arthritis?
What symptoms do people struggle with?
Eivind Ness-Jensen from the HUNT-study has now started a research project concerning which symptoms and problems adults with undiagnosed celiac disease suffer from.
Ness-Jensen also wants to find answers to the disease development itself.
Why some develop the disease when others do not is still a mystery.
We know a lot about the genes involved in the disease, and even more about what happens when a person develops celiac disease.
But why do some with these genes develop the disease while others do not?
“We know little about it,” says Ness-Jensen in an interview with Nord-Trøndelag Hospital Trust.
Translated by Alette Gjellesvik