In December 2010, after a 3 yr search to find out what my son was "allergic" to, we discovered he had positive antibodies to gluten, carried the genetics for Celiac Disease, and had inflammation throughout his entire GI, also making him lactose intolerant. After testing my whole family of 7 for the genetics, and for the antibodies, much to my surprise, we discovered that not only does everybody carry moderate to very high risk genes, my antibodies were very high, and my genetics showed HIGH RISK. Ive been gluten free in our home for my son for over 9 months. But after reading my blood work results, Ive personally been gluten free for over a month now in and out of the home. I have so much more energy on the gluten-free diet. I thought the way I felt before was just normal for a tired Mom.
I do have lots of questions. The GI doctors have answered so many so well. A big question I have is if everybody in my home should just go 100% gluten free now considering the odds with their genetics- all DQ2 or DQ8 or DQ2/DQ8. The doctor says they should-even in social settings that I should condition them to only consume raw foods and drinks outside the home.
Im also confused by some labeling that read "processed with wheat" even on items also simultaneously labeled gluten free. Im curious what other celiacs do with such labels. I avoid them now, except for the ones labeled gluten-free.
Im also considering having the biopsy done even though Ive already began the diet. Im afraid it will show nothing, and leave me confused. Or if I will begin to worry it is something else. Could it be something else causing positive antibodies on all counts even the celiac specific antibodies? 2 doctors say I should have biopsy for documentaion, but my bloodwork is enough to say that I must be 100% gluten-free, no matter what biopsy shows.
Im also wondering what other tests I need right now. We have done extensive labwork to make sure my vitamins and iron are well. In the past I have been anemic, low calcium, and low potassium. Right now everything looked good. But my good cholesterol levels were too low. Now that I feel better, I may just give up my morning cup of coffee.
Im feeling grateful to find this out before we got very sick. But I do feel sad often especially in social settings trying to explain our new diet.