Hi there, all.
I am new to the whole celiac disease thing. Our daughter, Rebecca (almost 7) has Down syndrome. Two months ago, as part of a routine well-child checkup, her doctor ran a Celiac Screen on her. He has a stepdaughter with DS who tested positive for celiac disease and after doing research he discovered that 1 in 8 people with DS also has celiac disease. He took it upon himself to test all of the kids with DS in his practice - he's so good that he has about 30 families that see him. Rebecca has absolutely NO symptoms, but her antibody numbers are off the chart!
Since celiac disease runs in families, we all got tested. So far 2 of our daughters and I have tested negative. Our oldest is off at college, and my husband is waiting for his results to come in. Despite being negative, after researching celiac disease myself, I decided that the entire house would be gluten-free. After I was gluten-free for 1 day, I found that I felt better than I have in 30 years (back in the teenage years....). The skin lesions that have stumped my internist and my dermatologist for the past 3 years started to clear up and I have also lost weight. The strangest thing that happened, though, was that if I accidentally ingested gluten, I started to itch all over. I joke to people that I am now officially Rebecca's "canary in the mine", as no one else seems to have this reaction to gluten. I have decided that I must be extremely gluten sensitive.
Well, that was a long way to get to my question! I have been religiously gluten-free since Rebecca's diagnosis, as I can't stand the itching that occurs when I get hold of gluten. However, the past couple of days I have been itching like a demon. The only things that I can think might be causing it is a Mozzarella cheese that I have in the fridge or the caramel coloring in Coke. The thing is, both companies state unequivocally that their products are gluten-free. Since I have been able to drink Cokes without much problem - the jury is still out on fountain drinks from Sonic - the only thing that I can figure it might be is the vinegar that is listed on the cheese package. My understanding is, though, that vinegar is safe.
Whatever I got hold of caused EXTREME itching that even Benadryl couldn't completely erase, and it took a whole day for the itching to stop, as opposed to the 4-5 hours that I experience with other glutenated food. I have also noticed that when I eat something with Dijon mustard or Worcestershire Sauce in it, I start to itch, too. When I looked at the ingredient list for Dijon and WS, vinegar is listed on them, too. Has anyone else heard of this? Any idea what this is?
I appreciate any help that I can get for this - I like vinegar, but not if it is going to make me feel like this....
Teresa Koch
Fort Worth, Texas