This topic seems to be really complicated, and each body is unique.
Lisa is part of a listserv for celiacs and asked this question, are you already celiac or do your become celiac. She wanted the general opinions of people writing in and compiled this and has allowed me to share it with you all. Here is what she shared as a compilation from many that wrote in and shared valuable information and suggestions:
Most people thought that to say one has been celiac for “X” number of years is to say one has been diagnosed for that many years, even though one has the genes from birth. It is an autoimmune disease, which needs a trigger. Some people said their diseased was triggered (i.e., by a stressful event: car accident, a virus, something environmental–no one knows for sure) a long time before they were diagnosed. Some people are asymptomatic, even though they have active celiac disease, or just don’t attribute symptoms, such as anxiety, to CD. Sometimes it just doesn’t show up until later in life, or sometimes it just isn’t diagnosed until later in life, when it was actually there doing all sorts of strange things (infertility, bone loss, severe diarrhea, lack of appetite, malnutrition due to malabsorption, etc. etc., etc.) Some were triggered, and then had a period of remission, and a later re-presentation . (by the way, many still do not advise eating glutens for the people in remission.)
Research currently says that unless you have the celiac genes, you may develop gluten sensitivity but can not ever develop Celiac disease. Some have the genes, but haven’t triggered. Just having the genes does not mean you will develop the disease. Even in sets of identical twins, one may have celiac disease while the other does not, although in majority cases (70%) both will have celiac disease. That means that there are other non-genetic factors at work in causing celiac disease. The predisposing genetic markers are found in about 40% of the general population but only a tiny fraction of those will develop celiac disease.
One who is not diagnosed WILL be getting gluten in their diet, there is no escaping it, unless one consciously attempts to avoid it. And eating gluten doesn’t “trigger” the disease into showing up, it is there all the time and does not go away. Eating gluten may or may not bring out symptoms in the individual. Gluten intolerance that causes GI damage IS celiac, but there are questions on how to label gluten intolerance when the target of the immune system response if another organ–thyroid, liver, brain, etc.
Celiac became an entirely NEW game since the use of tTg antibody testing was developed and Multi-Prevalence Study was published in Feb 2003.. Before that, there were too few celiac and no one knew that elevated antibodies showed a reaction. Before there were too few celiacs to study and most had severe damage when diagnosed. The new celiacs caught by routine screening of at risk groups are an entirely new group for research that didn’t exist previously.
There is still much to learn!
Thank you Lisa!
From our home to yours, Tina Turbin.