Disappointed With Gi Visit

[horsesjapan]

Well yesterday was just a big disappointment. I was assured that this dr was the best celiac dr in this part of Italy but he didnt' want to hear about any other symptoms other than GI symptoms and said based on the negative results for celiac of my bloodwork from the military dr (which had a negative Endomysium IgA and Gliadin IgA but no total Iga or tTg test and a positive gliadin IgG test, didn't feel that I could speak up about the "missing" tests, and there was a language problem too even though he spoke English, it wasn't like talking to someone who is fluent) that I probably just have lactose intolerance and that this sort of stomach issue (gas, bloating, abdominal pain, diarrhea off and on) is common in women my age (kind of got the feeling he was implying I didn't REALLY have any issues). He ordered a breath test for lactose intolerance, which even if that comes up positive how do they know if it's primary or secondary lactose intolerance? I can eat gelato no problem! The last time I got the "big D" was after eating spaghetti and drinking chocolate milk (ate luch at school with my son so there is the "school lunch" factor too! lol), so I can't really say for sure what the problem was. I am not a big milk drinker though, the dairy I usually consume is in the form of cheese (my cheddar even says it contains no lactose) or yogurt. He also ordered a test for calprotectin which is associated with inflammation of the bowel. And the little research I've done says it is common to get a false-negative for celiac disease but it is accurate for Inflammatory Bowel Disease (don't know if that is the same as Irritable Bowel Disease). He prescribed Duspatal, which is a drug for Irritable Bowel Disease. Don't think I'll be taking it.

I guess my options are go gluten free and see how I feel, which is fine but I really wanted the "official" diagnosis so my family won't think I'm totally nuts (I'm a little "off the deep end" in their minds anyway, I cloth diapered all my kids by choice, I breastfed them well past a year of age, I didn't vax my dd at all till she was 4.5 and we are taking vax slow, etc.). My MIL doesn't take my ds's food allergies very seriously (all IgG mediated so not life threatening) and he even has official diagnosis from the doctor! Also an official diagnosis would make it easier for me to stick to a gluten free diet, especially since my dh isn't willing to give up gluten himself, at least at home. I know I'll be tempted if we have bread and cookies and such in the house.

I could also do the genetic test from Enterolab. I don't see my dh being willing fork over the big bucks for the complete gene/stool test there (not that he gets the final say, but I don't want to spend that kind of money without being in agreement). If I had a positive genetic test that would be enough for me.

I suppose my positive IgG test for gliadin should be enough. I'm just really disappointed in this dr. I thought he'd do more to rule celiac in or out, one way or the other. So dont' believe all you read about how advanced everything is in Europe in regard to Celiac!

Nancy