Posted 18 January 2013 - 08:00 PM
sounds like you're doing great. my 3 kids have all gone gluten-free without testing and are thriving. my 26 yr old daughter's main symptom was boils in her groin - like since she was 3 they've been there. we'd taken her to several docs, thought she might be allergic to the elastic in her underwear because they formed under the elastic. but nothing helped. she took Accutane for 4 months last spring/summer before we knew about this. Now, finally, after being gluten-free for 2 months they have begun to clear up.
my son, 24, had IBS-like symptoms for about 9 years, but not all the time. he could go for months being fine. now, though, he says his stomach feels calm also and when he's accidentally gotten some gluten, it's completely made him miserable and he's felt sick. he's had a lot of anxiety and anxiety attacks over the past 8 or so years, and took antidepressants for about a year as well. he has terrible insomnia and trouble going to sleep, which i've read is related to malnutrition - specifically that you are deficient in tryptophans. he takes 5HTP to help with that, and it really does help him sleep better.
interestingly, i took it for about 2 years and it put me right out and i slept all night like a baby. but now, i guess i've caught up with my tryptophan deficiency because it no longer works for me. very curious.
my 20 yr old daughter has had increasing food allergies for the past 2 years, narrowing her diet down farther and farther. finally the university health center gave her an epi-pen it got so bad. she also had anxiety attacks. she also was having bizarre thoughts that were really worrying me. after 2 months that has all cleared up. it's amazing.
mine wasn't so dramatic, i suspect because my crisis happened when i was in college and in my young adult years. i just ate less and less variety of foods and still had problems. although i never had trouble eating gluten food - or so i thought. i ate and ran for the bathroom most of the time. i had terrible cystic acne from about 17-23, but i had acne of some sort from age 9 til now. my skin is definitely my weak point, along with my stomach.
i found digestive enzymes about 15ish years ago, started taking those with every meal and taking lactase enzymes and probiotics, and my health really returned. even so, by the time i'd read everything i could find about it online, i knew i had it. my mom and brother too. so i got tested and i do have the genes, and i do have antibodies, although i would say i felt great in spite of it. i'm being committed to no gluten anyway, because i don't want the damage from those antibodies or the other auto-immune diseases if i can avoid them. my mom's side of the family has diabetes in almost every one, and nobody is overweight. there's a very strong connection between diabetes and celiac disease.
for your family's sake, you might pass on some info to read. i thought the best info is on this site (look in the section off the home page that lists diseases that are related to celiac), the University of Chicago's Celiac Center site, and their e-book that is at the bottom right of their home page. Between those, you'll get lots of good info on why it's imperative to go gluten-free if you have the antibodies, or the symptoms, because untreated leads to bad things. Read other people's posts too, for other information.
i'm not sure there is any advantage to getting the official diagnosis. maybe there is, but my kids aren't going to do it. they're just not eating gluten. you're in charge of what goes in your mouth, after all! you just have to be assertive with any people who want to tell you that one bite won't hurt you, or you don't really have it, or whatever. if you feel better without gluten, there is your answer.
Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.