Some of you who have followed my blog and know me, know that I don't have very clear cut answers for if I am gluten intolerant or have celiac disease. In my gut, I feel I have celiac. But I can't prove that because I haven't eaten gluten in 2 1/2 years! I needed more pieces for my diagnosis puzzle.
My mom found out that Prometheus now does genetic testing without a doctors order by using your saliva. You can order it on line at their website called My Celiac ID. It takes roughly 3 weeks start to finish to find out. They send you an email when your report is ready. The report will tell you if you have the gene, which gene you have and what your risks are.
I now know I have the gene. I have DQ2 and it was from one parent. It puts me at high risk for celiac disease. What does this mean for me? I'm not sure yet. I have an appointment with my doctor. He might want to do my biopsy over, but I will not do that. I don't think I could live through a gluten challenge. I would like to find out if my slides could be looked at again though.
For those of you that don't know, I had a positive blood test, but a negative biopsy. Circumstances around my biopsy has always made me worry something was missed. I have always felt I have celiac disease and not gluten intolerance. Having the gene will not tell me if I have celiac disease. It only indicates risk. It does help to narrow it down though. Had I not had the gene, that would have ruled out celiac. Now I know I can't rule it out. It is a possibility.
When Kati had her blood test and it was higher than mine, she did not want a biopsy. At the time, I felt like mine was negative so why put her through that. Knowing what I know now, I would have made her go in for a biopsy. Knowing what I know now, if you can, you should go through ALL the testing before starting a gluten free diet. I wish I had the gene test before starting a gluten free diet and that I stayed on gluten and did the biopsy over just to be sure. Not because I need that information to stay gluten free, but because I want to know which condition I have. Either way, I'm gluten free for life.
At the very least, now I know for a fact that this gene is in our family and celiac could be a real concern for my children and grandchildren. Kati is getting tested next and then Bryan. I'll let you know how it comes out. My mom is also getting tested because she wants to know what side of the family this came from. I feel like a detective that just found a really big clue.
