GIG Conference, Day 2

Welcome to day two of the Gluten Intolerance Group Conference! The morning sessions were interesting, not only because of the content, but because of a minor controversy about what one of the speakers was saying. I overheard some people talking about the fact that his presentation should have been approved before he made it, and evidently it hadn't been,.. he was saying things some people didn't want to hear.

He spoke a lot about Celiac Disease not being the worst of the gluten sensitivities, about other wheat and gluten allergies being much more prevalent, and about how you can't have CD without having atrophy of the villi. That I can understand, although I have to wonder if that means I will lose my diagnosis once my gut heals... no atrophy, no more CD?

I had a few questions for him, such as "Do people with other gluten intolerances have the same chance of lymphoma and other autoimmune diseases as those with CD?" But I was shy, and didn't raise my hand to ask. Figured I'd get boo'd out of the room if I did.

He was the third speaker of the morning. The first spoke about labels and how to read them - and how important it is to work with a nutritionist or a RD when you have a gluten intolerance so that you can get a balanced diet without adding to the potential for heart disease and other problems brought on by the replacements for wheat. You see, most of them don't have much if any fiber, and they tend to be very nutrient (calorie) dense. They are not usually enriched, and so they add few vitamins and minerals to your diet - which must then be added in other ways.

The down side of all this? Most insurances (including Medicare) will not pay for nutritional services, even for a disease or condition that has a completely nutritional treatment. So... the vast majority of us will do without.

Second speaker was the best of the morning, at least for me.

He seemed kind of like an aging hippie, but he made good sense. Talked about the need for specialty foods and the lack of need for specialty everything. He recommended using the local grocery store for all those things that are locally available - fruits, vegetables, canned and frozen goods that are naturally gluten-free or are mass produced and labeled gluten-free. Then he went on to discuss the need for specialty stores to obtain the gluten-free breads and things we depend on to make life just a little bit easier. But his point was that he makes the time to travel to several different shops for his food, and in doing so he saves a bundle. And with the cost of gluten-free foods, that is important.

I appreciated everything he had to say, but he said one thing that really resonated with me... he said you have to let go. That it takes time, but eventually you have to let go of your hopes and expectations of finding something, anything, that will replace wheat in both texture and taste. It just isn't out there.

And for me, that was the most important sentence of the day.


Lunchtime: Lovely wraps made with sandwich petals. I had heard of them, but never saw them on any of the shelves where I shop. (No wonder... the nearest store that carries them is over a hundred miles from my house) But they offer a sampler pack on the website, and I am considering ordering it. The expense is pretty great, but the wraps are incredibly good, both in taste and texture. They act like real flour tortillas - they roll without cracking, and they taste great.

The osteoporosis discussion was good, but pretty clinical. Of course, I've been reading about it for years, so I had a decent idea what they were going to say before they said it... vitamin D, calcium, weight bearing exercise. That sort of thing.

The final speaker of the day talked about Celiac Disease, and how it is a lifelong diagnosis, it is being researched (but the research is seriously underfunded) and that there are some people who are attempting to develop a type of allergy shot treatment for it. Seems that they are able to reproduce the gluten effect on the intestine by injecting the proteins into the arm rather than having you ingest them. They are hoping to find a way to use this to create the equivalent of allergy shots for Celiac Disease. And one day, perhaps, they will. For right now, though, we still need to participate in studies and get out there to talk about the disease, as there are still way too many people who don't believe it is very serious or who refuse to take those of us with it seriously. He used a number of examples to illustrate his point, including one of a physician who refused to test a patient because CD is a rare childhood disease and "this whole celiac thing is a fad."

Sounds a lot like my doctor.

I had a lot of fun, met some wonderful people and got to try some great foods. I'm going home with samples and recipes to try and lots of great things to remember. And I am looking forward to next year.