slee11211

Also thanks for the R.O.C.K idea! And the distraction method....good stuff.

And Cathy, good luck to you too. I've been stumbling along with this thinking that as long as he seemed healthy, it wasn't a huge issue yet. But I think after we get our own selves sorted (it was a lot of work for me, I was in bad shape!), we have to move on to the little ones. So this is all good info to be armed with. Hope you find your path free of too many obstacles.

Thanks to all.

Wow....thank you everyone for the wealth of information and incredible insights. Hearing concrete answers from others who have walked this road helps. Lisa, thanks for the list, I will copy it down and use it - he is still eating gluten regularly so at least there's that. And to everyone else, thanks for the encouragement.

I'm still not entirely sure why there is a discrepancy between docs/people who think the blood work and biopsies are an absolute necessity and those who say no. That's the only thing I'm still having trouble reconciling in my brain...I don't know which side to put all my faith in!! Even my mom, who is a nurse, is suggesting that I don't dare put my son through all that (bizarre - but then, she's in deep denial and refuses to think about how my diagnosis could affect either her or my father and didn't want me talking to my brothers about it at all). I find it very disconcerting that I can find doctors on both sides of this subject.

I'm beginning to develop my own, incredibly unscientific theory about all this: I'm beginning to wonder if it matters much at all if someone is positive or negative. Once someone in the family has come up positive...everyone else benefits from the new diet, period (and I'm talking about pulling the vast majority of grains out, gluten-free or not). Being Paleo has helped me to understand what grains do to our systems, all of them, Celiac or no. I envision a world not so far off where this becomes common knowledge and we look back on the strange time when the overload of grains was considered "normal" food and was making pretty much everyone sick. But even if my whacky theory were magically true (and trust me, I get that I might be in some early phase of understanding!), I would feel like a horrible mother if I don't follow common logic set up by the best doctors in the field. I thought mine was one of them, but I have to wonder now.

What would be a good resource for finding best doc for us in NYC? I feel lucky to be in such a big city, as I'm sure there are more than just Dr. Green here...(or should I just go there?).

Again, thanks to all for your packed responses. I needed the perspective!!

Thank god, nothing major! I have been a bit foggy and tired...but that comes and goes so often (from being undiagnosed until 46!) that I can't tell if it's out of the ordinary or not. So...good lesson. It's not always going to be a major disaster. And read labels, even when it's soy milk.

I went probably 30+ yrs undiagnosed. Different times of extreme stress and then having a baby brought it on hard. When I first found out and eliminated all gluten, I noticed an increase in energy and stomach issues lessened a bit. But I didn't get a ton of relief with thyroid issue, itchy skin, carb cravings, etc. So after a year, I read some articles that introduced idea that there are glutens in other grains (like out of the 18 varieties of quinoa you'll find without labels as to which they are, 3 of them get a gluten response from celiacs). That was all I needed to hear and went completely Paleo. Since then, all my extra weight dropped off, my stomach flattened out and my entire body is "firming up"...it's not a fitness thing, I'm probably doing less now than before. It's a healing thing, everything just feels more stable and strong. I am not having issues with carb/sugar craving, I'm not having any stomach or digestive issues, no more crippling GERD (that didn't go away with just traditional gluten free), no more sinus issues, and best of all, my immune system is stronger. So there is a LOT to look forward to...be patient, and keep researching to see what's right for you. Everyone reacts to this differently (we are all completely different chemistry sets!), so you have to find the parameters that work for you! Good luck in your journey..

Ha, nope.

1) I don't like the taste of a lot of "replacement" products, and 2) a lot of that stuff is just too rich for my blood anyway. Can't justify the premium on a lot of the ready-to-buy gluten-free products out there. But Udi's does make a damn-fine hamburger bun.

I've mostly replaced the gluten with more fruits, eggs, meats and other non-processed items. Lost about 15 pounds real fast, but have since kind of stabilized/plateaued.

Not sure if you have a cooperative MD, but it could be helpful to do an in depth panel for allergies. Pretty common to find that a lot of foods you wouldn't expect are now allergies. I was lactose intolerant since college (46 now) and turned out it wasn't intolerant, was full on allergic. If you're really good with foods, you might be able to just do elimination and figure it out (I don't know how people do it, but it might be less $).

Good luck to you!