What’s new in Coeliac Disease: Research and Updates
The Food List, Coeliac Awareness Week and the Gluten Free Living Show are what everyone sees up front when they look at the Coeliac Society. But is that all we do? Definitely not. One of the growing aspects of our work is research into coeliac disease and educating health professionals so that people with coeliac disease can get the right care at the right time.
Why do we need more research in Coeliac disease?
50 years ago coeliac disease was diarrhoea and weight loss. It only happened in children and people grew out of it. 30 years ago coeliac disease was diarrhoea and weight loss but you didn’t grow out of it, it lasted your whole life. 20 years ago it turned out that undiagnosed and untreated coeliac disease could cause bowel cancer and osteoporosis. Today we know that coeliac disease can be diarrhoea or constipation, turn up in people who are underweight or overweight, can cause infertility, migraine, nerve damage and mouth ulcers. We know that the skin rash Dermatitis Herpetiformis is actually coeliac disease and that around 40% of people with anaemia are actually coeliac.
The reality is that Coeliac Disease has turned out to be much more complex than anyone ever thought and it affects far more than just the gut. Research into coeliac disease is essential if we are going to learn just how much it affects our members and how we can help to manage or head off some of the effects.
Why are some people really sick when they get glutened and some people don’t notice the damage for years?
We all know people with coeliac disease who start vomiting within hours of being glutened, who spend two days attached to the bathroom due to, what we will refer to as, “digestive side effects”. People who are in serious pain and even those who end up in A&E. And then there are coeliacs who can “have a little” and it’s fine, who don’t feel sick, never vomit and only get diarrhoea if they really eat a lot of gluten in one go. This has given rise to the idea that some people are only “slightly coeliac”. In reality, this is like being “slightly pregnant”.
The problem is that, whether someone feels sick or not after eating gluten, the damage is still happening in the body. People who don’t feel sick after eating gluten still have the same level of osteoporosis and bowel cancer as people who do feel sick. So why is there a difference in the immediate reaction if the long-term damage is the same?
It all comes down to your genes. There are some genes that make it more likely for someone to get coeliac disease. However, it’s not just one genetic difference, there are several. Whether or not you vomit after eating gluten really comes down to which coeliac genes you actually have. So you’re not “slightly coeliac” you just have coeliac disease from a slightly different genetic change to the unfortunate person who gets the immediate, severe, reaction to gluten.
Coeliac Disease and Other Autoimmune Diseases
It has been well-known for years that people with coeliac disease are more likely to have other autoimmune conditions. This works the other way too. People with any autoimmune condition are more likely to develop a second or even a third. The two autoimmune conditions that are linked with coeliac disease the most are thyroid disease (especially underactive thyroid) and Type 1 Diabetes (not to be confused with Type 2 Diabetes which is not linked to coeliac disease). However, research in the last few years suggests that people with coeliac disease may be more likely to develop other conditions including:
- Autoimmune hepatitis
- Multiple Sclerosis
- Sjorgen’s Syndrome
- Addison disease
- IgA Nephropathy (Berger’s Disease)
- Ulcerative colitis & Inflammatory bowel disease
- Primary Biliary Sclerosis
At the Coeliac Society we are currently involved in research to find out the affect that autoimmune conditions have on our members – how many are affected and if the age at which they were diagnosed with coeliac disease has an impact. From research in other countries, it seems that the earlier someone is diagnosed with coeliac disease, the less likely they are to go on to develop other autoimmune conditions. However, there is much more research needed in this area.
Treatments for being “Glutened”
As we mentioned above, for some people, being glutened has quick and severe consequences. Researchers are looking for ways to stop the severe effects that some people experience when they are glutened. There are several drugs that are being tested at the moment to see if they can interfere with the reaction that some people have. This will not make it “safe” for anyone to eat gluten (unfortunately) but it is hoped that these medicines may be available in a few years to help people manage what happens if they do accidentally eat gluten.
One promising drug is larazotide acetate from Alba Therapeutics. This drug may help to reduce inflammation in the gut after someone has been glutened, hopefully reducing symptoms. The drug is in phase 3 (i.e. larger human trials) at the moment.
Cure for Coeliac disease?
This is the Holy Grail for many researchers when it comes to coeliac disease. In many ways, coeliac disease is one of the better autoimmune diseases because the treatment (a strict gluten free diet) is very effective and doesn’t have the side effects of some medicines. On the other hand, a strict gluten free diet is very difficult to follow, is more expensive, and comes with huge restrictions for along with difficulties eating out and the risk of being glutened. Although people can, and do, get used to it, it is a lot more difficult than taking a pill (or even several) on a regular basis. There are some promising lines of research in this area (although we are still a long way from a cure). Drugs that are in the early stages of trials are hoping to reduce overall gluten sensitivity in people by interfering with how the immune system responds to gluten. There are also drugs being developed researchers hope will help to treat refractory coeliac disease.
Urine tests to check for gluten?
The yearly tTG blood tests for coeliac disease can give us a rough idea about how healthy the lining of someone’s gut is and whether or not they have (accidentally or otherwise) had any gluten. Unfortunately, the tTG tests are not 100% accurate in this and lots of people can have a normal tTG even if their gut is not at all well. It can also be hard for someone to tell if they are feeling sick because they have food poisoning or if it is due to gluten. Researchers have now come up with urine tests that people can use to check for gluten called GIP tests. GIP means “gluten immunopeptide” but it is easier to think of it as “gluten in pee”. If the test is positive, it means that someone has eaten gluten recently and these tests are also a much better indicator of any gut damage that might be happening as a result. These tests are not widely available yet, but expect to see them in clinics in the near future.
Is modern wheat causing coeliac disease?
There is no doubt that Coeliac Disease is on the rise – and it’s not just that doctors are getting better and spotting and diagnosing it. At the moment, scientist don’t know why more people are getting coeliac disease but one possible question is about the type of wheat we eat today. Researchers recently took a look at the levels of gluten in wheat today and compared with stored samples of wheat from the past 100 years. Detailed analyses found that gluten levels are actually the same and they have concluded that modern wheat is probably not the cause of increases in coeliac disease.
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