Can You Be Celiac W/out The Genes?

[anerissara]

Ok, so I haven't had the gene test but does anyone know if they know for sure that they've identified all the genes that cause it and how accurate the gene tests are?

My dad had the gene test and doesn't have the gene. My mom hasn't yet, but I was wondering what if both parents don't have the gene, but I have the disease? Is that possible? How accurate are the gene tests, and are they considered to be a true measure of whether or not you can have celiac's?

[HawkFire]

My gene test actually came back negative several years ago. I am thinking it was a test gone wrong. I clearly have Celiac Disease by other testing results. Not to mention the dietary response. I believe we cannot put all of our faith into a single test and multiple testing can become quite costly. The very best test, imo, is the dietary response. If you were sick and felt as though you were dying while you consumed gluten, then recovered on a gluten free diet... then were made severely ill by simply ingesting gluten again, then made a remarkable recovery once gluten free.... well, it only serves the insureance company's needs to have an "official" dx anyway. Unfortunately, I have an official dx despite the test run for the gene.

[AndreaB]

Have you had blood work done? The main celiac genes are responsible for over 90% of celiac diagnoses but some "non-celiac" genes cause celiac disease as well. There is a wide range of gluten sensitivity and damage that can be done.

If you feel better off of gluten, then don't eat it.....unless you want an official diagnosis.

[Ursa Major]

Even though scientists are admitting that the two celiac disease genes they've found are probably not the only ones, doctors act like they are, and that you can't have celiac disease if you don't have those two genes. I've read stories of people who don't have either gene, but had a positive biopsy.

Dr. Fine (Enterolab) has identified two more genes for gluten sensitivity, rather than celiac disease. If you have those, gluten will make you very ill, too. But even though it won't necessarily destroy your villi, it is more likely to attack your brain and nervous system, as well as causing gastrointestinal distress.

So, your dad could very well have the gluten sensitivity genes, and have passed them on to you, despite the doctors declaring that he doesn't have a problem. And even if he has been tested by Enterolab and doesn't have any of those genes, it is still possible he has celiac disease genes that are as yet unidentified.

[lonewolf]

I'm not officially diagnosed with Celiac, but I am totally gluten intolerant and have had a large number of Celiac symptoms for most of my adult life and even in childhood. I don't have either of the main Celiac genes, something that really surprised me. I think that one of the problems with current Celiac testing, even gene testing, is that people are told that their tests are negative, therefore they don't have Celiac and can continue eating gluten. A large number of people (like 2 of my children) test negative, but have dramatic results when going gluten-free.