I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male. So yes, you can definitely still have it and have significant damage with a negative biopsy.
Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old. Life is going to get harder for her. Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.
In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years. His parents were perplexed. Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease. So, he ate pizza. He was too embarrassed to tell his parents.
My daughter does not have celiac disease. She was first tested two years ago. Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year. It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.
It certainly sounds like your younger children should be screened.
I wish you both well!
Perhaps you should consider asking for a GI referral. You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten. It is the "gold" standard for a celiac diagnosis anyway!
Here's the deal with going gluten free. You can do it. It costs nothing, but you must give it six months or longer. You'd need to think like a celiac, but it can be done! I'll tell you my tale. My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist. After a year of mistakes and learning, he got well. It worked! Thirteen years later, I was formally diagnosed. (It was a shock as I was only anemic at the time.) Hubby would be the first to say that I have had way more support from family, friends and medical. I must say, it's nice to see those lab results. It really helped me adhere to the diet in the beginning too.
So, you know your medical situation. You must do what's best for you!
I hope you feel better soon!
also: glutendude - i don't get it. shouldn't it be glutenfreedude? lolz
i eat out few and far between. most of the times i've been glutened it's been eating out. this weekend i'm getting my bacon cheeseburger on at red robin i always get my 'good' waitress - lucky, i guess, paula takes good care of me and i will eat at bonefish but they have a limited 'safe' menu. look for places that have the 'GiG' training they know their stuff. mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way. they know to avoid cc and change their gloves, etc.