If you’ve ever attended a large celiac support group meeting before or attended any type of event which has a large collection of people who suffer from celiac disease, you may have compared notes and noticed that there seem to be a number of varying types of the disease out there which result in a variety of symptoms. Though they are all forms of celiac disease, some are definitely more severe than others.
Historically, most testing has focused on the most severe forms of celiac, but recently WebMD covered a study that showed patients with less severe forms of celiac disease may be at a higher risk of death.
The researchers compared all patients with a comparison group from the general population and followed them for a median of about seven to nine years (half were followed longer, half less). Among those with celiac disease, there were 3,049 deaths; among those with inflammation, 2,967 died and among the latent group, 183 died.
The increased risk of death, the researchers found, differed by group:
- Those with inflammation had a 72% increased risk of death.
- Those with celiac disease had a 39% increased risk of death.
- Those with latent disease had a 35% increased risk of death.
But Ludvigsson puts the finding in perspective. The most important finding, he says, is the relatively low overall risk of death, even though it is increased. It translates, he says, “into very few actual deaths.”
It is important to note that the researchers also found that people who are diagnosed before age 20 had nearly twice the risk of death. However, Ludvigsson put that into perspective by stating that kids are at increased risk of mortality. It is also believed that the higher risk in those with less severe disease may be because of untreated inflammation, as those patients may not be told to follow a gluten-free diet.
I don’t understand this at all. I have Celiac Disease, for 2 years I have been Gluten Free. I attend meetings but I have never heard of different “forms of CD. Either you have it or you dont, you may or may not have symptoms, but to say there are more severe forms than others, does not make sense to me.
Are you trying to say that people who aren’t diagnosed and therefore eating gluten, are at more risk because their body is attacking itself? That I understand. Perhaps you can explain how many ” forms” of CD there are as 3, 5, or 9 ????? If the group with inflammation has CD, why aren’t they Gluten Free which reduces inflammation????
Sharon, you are correct in that there is only one celiac disease and either you have it or you don’t. However, every human being is different and some people who have celiac have more severe versions than others. Some celiacs have no problems with oats while others can’t have oats. Some studies have even show that some people with celiac can have a very small amount of gluten and be okay, while most can’t.
The study written about above was geared towards those who have a less severe version of celiac disease. You can read more about this in the article on WebMD, which can be read here.
It seems that most doctors do not actually consider inflammation to be CD, but instead define/diagnose CD only by the full blown villus atrophy. Therefore, sadly, patients who are biopsied that do not (yet?) show villus atrophy are often told they do not have CD. They keep eating gluten, and therefore, do not reduce the inflammation. This is an important study to show doctors that CD should not be defined by villus atrophy alone, and that patients who show any level of gluten related damage are at increased risk of death.
Actually there is Collagenous Celiac and Refractory Celiac 1-2