A Good Experience, For A Change!

[Emilushka]

I met with the GI specialist yesterday for the first time. The whole thing was a really great experience. I just wanted to post about it because there are so many negative experiences that you guys have talked about, but few positive.

I was diagnosed 4 weeks ago. I've been gluten-free since then, and for the past week I've been dairy-free as well (and will sadly continue to be so). The doc thinks I'm lactose intolerant, but hopefully I'll be able to tolerate dairy when my intestines have healed more.

I clarified what vitamins I should take (multivitamin, calcium, folate) and we talked about exactly what the gluten-free diet means. He warned about cross-contamination, eating out, eating at other people's houses, sharing wooden utensils, sharing nonstick pans, etc. It was really nice to finally hear all that stuff from a doctor.

Then I asked about my blood pressure (which was elevated in the 130s over 90s until I went gluten-free, and now it's down to 120ish over 80ish or lower) and my lack of appetite. He had no idea about those things. That was a little disappointing. It seems like the medical perspective is a little lacking when it comes to those things.

One thing I did want to share with you is what he told me about future research. He went to a conference where the biggest Celiac researchers gathered and there are several groups pursuing interesting things. There's a group in Australia that's working to develop an injection that would go under the skin (like a tuberculosis skin test, if you've had one of those) that would somehow help your body create antibodies that would bind the gluten so that it couldn't be bound by the autoimmune antibodies - basically blocking the Celiac reaction at the very first step. Then a Celiac person could eat wheat! These guys are in the stage of human testing now, so we'll see.

There's a group in Holland that's working on developing an enzyme that would be combined with food and would break down the gluten before it even got to your intestines. They're currently struggling with getting it mixed in with the food well enough, but it does break down the gluten effectively if it's mixed in properly. They're using a fake gut, so they're not on human testing yet.

There's another group somewhere in Europe (he told me and I forgot completely) that's working on breeding out the three peptides in the gluten that cause the Celiac reaction so that people with Celiac would have a breed of wheat that would be totally OK. That's not going so well, but it's being attempted. Evidently those little buggers are important for the structure of the gluten or something.

So there is hope! And then when I asked if I needed follow-up, he said basically that I have a head on my shoulders, and if I have trouble, call. Otherwise, I don't need to waste my time coming in. I know that's likely not standard treatment, but I really respect that he understood how hard I am willing to work on my own. He validated my diagnosis, despite my negative biopsies (evidently Celiac causes such patchy damage that an endoscopy is a pretty bad way to get biopsies). He said that I would know more than a nutritionist would, so told me not to even bother. We have no specialized nutritionists in this area, so it'd be a waste of my time.

But overall, he tried to warn me, he gave me good information, he told me about the future of Celiac (hopefully), and he said he's always there if I need more help.

Then he kicked me out of the nest to fly away like a good baby bird. :-P

[SGWhiskers]

It sounds like a great appointment! Interesting to hear about some of the research being done out there. If I could do anything to avoid the accidental cross contamination, I would be first in line. I don't think I would ever sit down with a wheat PBJ sandwich though no matter how much they said a treatment would work. Hmmm. Now, if they figured out how to get cheese back into my life, that might be another story.

Thanks for posting.

[Emilushka]

The only downside was that he hadn't ever heard of cross-reactivity with casein, which is what I've got. He was sure it was just lactose intolerance. Oh well. I guess we all still have something to learn.