There is a doctor whom I am gathering a high respect for while coming across her interviews about and research on celiac. Her name is Dr. Sheila Crowe and she is helping put foundations down for the celiac vocabulary as well as allergy and intolerance merely by putting a better grasp on celiac itself. Dr. Crowe on celiac (video from a conference)
Our country does not spend the money and attention on celiac that the rest of the world does. Most countries have moved on to the more efficient genetic testing while we are still mostly just swabbing our cheeks receiving grey area results. We come low ranked in the world to carry celiac within our population; but this is also because we have one of the lowest rates of diagnosis.
Dr. Crowe and the New York Times high fived for a question answer session that I found amazingly educational; whether you have been diagnosed for a long time or no issues at all and you just want some info on this business. America is a few clicks behind understanding these issues and it takes someone like Crowe to help us get back on track.
There has been enough evidence that certain countries carry the genetic receptors towards celiac in higher abundance than others. People of Irish descent are more likely to have celiac than those of another genetic makeup. It is most commonly found that 1 in 300 Irish are celiac. But this is diagnosed factual evidence. You cannot have these facts if your population is under diagnosed…
Since celiac is a part of the genetic lottery, people who have it carry genes that are specific identifiers for it. These genes are in the family of genes for proteins referred to as human leukocyte antigens, or H.L.A. It is a subset of these genes are involved in autoimmune diseases, and the genes that predispose to celiac disease are in that group.
If you have the human leukocyte antigen you have the genetic markers to have celiac occur but this does not mean that it will manifest within your body. It just means it is possible. The thing is, you can’t have celiac and not have the H.L.A. If you have weird food symptoms and know beyond a reasonable doubt that it is the wheat, then this test is for you. This little puppy could also clear up my unknowns for good as I already know gluten is not my friend; but not the exact category in which to label myself.
The H.L.A. testing is picking up some speed here for usage with celiac identity; but it has not yet reached the regularity that it has in Canada and Europe. In the U.S., this test is most commonly used to find organ and tissue matches for donors. It can also be used to make sure your baby daddy keeps paying alimony on Jerry Springer. Handy thing, this test.
Our government did a summary that acknowledges it is cheaper to do this genetic testing than it is to dig out a piece of your guts in a biopsy. However, since having the marker does not mean you actually have celiac; the only way to play both hands straight is to also have a biopsy. The summary also states there is a 95% success rate so there is a 5% chance that you can fail this genetic test for celiac.
So from how I understand it, If you fail the biopsy, and you have the genetic markers; you now have to wait for a better test. If you fail the biopsy and you are in the 5% H.L.A. anomaly, sucks to be you. Just kidding, but not really because you may have celiac and you now cannot prove it. You may be intolerant and you may be celiac and your only help now will be the severity of your symptoms as a guide. This is also how humankind has had to deal with illness thousands of years. At least we don’t rely on the four humors anymore.
I may fail the biopsy, but if I have the genetic marker for the disease, at least it will be a step in a clearer label direction. If I fail both, oh well. I still do not care if I have a label for myself. Wheat kills, enough said; but I want to be sure for anyone reading these posts o mine so I will get this done. If I am not celiac, I am worried the label will influence the direction my research meanderings will take. The power of the name plate is always something to consider. When I get my answer, I will be a different blogger for better or worse.
If anyone reading this is having symptoms with no answer, I really would recommend reading the stories attached to the NY times link. It feels good to feel like you are not alone and the varied symptoms of celiac and intolerance can make us feel separated from each other. It is rare to read a story with your exact issues, but there is so much crossover.
It is the same reason part of my job is talking. I sell cookies and treats at a GF/cornfree/dairyfree/soyfree and white sugar (mostly) free place. People coming in who have felt isolated in their issues often let loose a torrent of sealed up words. Even if they aren’t natural talkers. They often feel like they have been bugging their friends and family with this new information and coping with a new identity. It can be cathartic to be in a place that specializes in what you are now learning to identify.
When most of the people in the room deal with what you are dealing with, it feels good to be in a majority for a little while. The bakery serves as a place of treats and also the thought and word storage of those who need listeners. As I say ad nauseam, this world of celiac and intolerance needs a better voice. I will go into work and ask people what they think about the human leukocyte antigen and biopsy testing. To know or not to know!
Have a nice day and thanks for reading.