Saturday, April 28, 2012

The latest...Cyrex Labs, and more!

We had a small meeting on Thurs. April 26, but with some awesome GF mac and cheese, broccoli salad, chocolate cupcakes, and a zucchini/egg/sausage dish. I wanted to share what I'd heard/seen at the Gluten Free Expo in St. Pete last month. The organizers did a lovely job, and there were a lot of vendors. I must admit, I may not be your best source of information about gluten free products at this point. Most of them are just made from refined alternative flours and jack up your glycemic index... so for a while I've been over breads, crackers, cookies, etc. I have my favorites, as I suspect we all do, but I am leaning  more and more toward a Paleo diet just for the sake of being healthy (and my Cyrex lab results suggest I should....). I will say Udi's now has some breads with millet, flax, chia, etc. with a bit more protein/fiber than their regular stuff, and the piece I sampled (that I do not believe had been frozen) was very much like regular bread in terms of texture.

The speakers at the expo were what I wanted to hear. Acoustics were not fabulous, so my notes are sketchy. John Libonati spoke first about where we are now with gluten sensitivity, where we are going, where we should be, and what we need to do to get there. He is co-founder, along with Cleo Libonati, of www.glutenfreeworks.com, which I've not spent a lot of time with yet, but has a little bit of everything... resources, research, recipes, etc. He spoke about the incidence/prevalence of gluten sensitivity, and we all know it's higher than what traditional medicine thinks it is. He spoke about why doctors are behind, why the celiac prognosis should be better than it is (everything is about education, of the patients, physicians, and public, and this is all behind where it ideally should be). He presented the case for educating physicians, and he and Cleo have a book: Recognizing Celiac Disease. I thumbed through but did not purchase it, but it looked like a resource guide of the multi-systemic ways that these disorders can manifest themselves. Everyone is consistently stating that atypical presentations are increasing (i.e., seeing more headaches, aches, heartburn, etc. rather than just diarrhea). He spoke about the key to optimal health including becoming your own advocate. Another website to check is deals.glutenfreeworks.com. I haven't looked yet, but I will!

Melinda Dennis in a licensed dietitian (I hope I'm using the right lingo for the credentials) at Beth Israel Deaconess in Mass., and she herself has celiac disease. If I'd have known she was going to be standing at a table all by herself before her talk while people were looking at the exhibits, I'd have come armed with a ton of questions, as she was totally free. Afterward she was mobbed and you couldn't get back to her. She has a book: Real Life With Celiac Disease. I have it. It appears to be a good overview, with many contributors of different chapters. She spoke about why people are gluten free and still don't feel well. It was a really good talk. The main reason, of course, is hidden sources of gluten. Some things I jotted in my warp-speed notes included hidden gluten, cross-contamination, dining out/travel, label reading skills, body care (e.g., lipsticks, avoid Aveeno with oats, Nutragena with wheat). Choose alternative flours that are LABELED gluten free, as flours and grain products that are naturally GF can still be contaminated. If you're eating your favorite GF muffin from a bakery that is made with amaranth flour, for instance, she noted you'll want to know the source of the amaranth.

Overlooked sources include meds and supplements. Meds are not required to follow label laws; supplements are, she said.

She talked about other food intolerances too, that can mimic celiac disease. It's a long list, and I don't think I got it all:  corn, lactose, sulphites, vinegar, carbonation, nitrates, nitrites, dried fruit, coffee, preservatives, alcohol, sugar, eggs, BHA/BHT, citrus, soy beans, yeast. All of this stuff is diagnosed with a very careful, methodic elimination diet, best supervised by a dietitian. Eventually you reintroduce one new thing every 2-7 days, and ultimately end up with the ideal of  a rotation meal plan where you never have the offending substance more than every 4th day. She noted this takes patience, courage, and time! She noted it's tricky b/c you may not feel the effects of  a problem food until 24-48 hours after ingesting it.

She also discussed small intestinal bacterial overgrowth, which you need a specific test for an the treatment is antibiotics. 

She elaborated a bit on fructose malabsorption, She talked about FODMAP which is fermentable oligo- di- -monosaccharide and poly -something!!!! (??) but are in all kinds of foods, like high fructose corn syrup, lactose, onion family (garlic, leeks, artichokes are all high in fructose)..apples, pears, peas, soybeans, xylitol, isomalt sorbitol... prunes and cherries never get broken down, but go straight through.

My notes can't possibly do this justice b/c it's not my area of expertise, but the gist is if you're gluten free and still don't feel well, there is help out there to assist you in deciphering the possible causes. Ms. Dennis can consult with you by phone on any of these aspects and can make a plan with you. She said the only thing she cannot do is labs. She has a website at www.deletethewheat.com, and noted that www,celiacnow.org is coming! Places to find a celiac dietitian include eatright.org, gluten.net, csaceliacs.org and there were more but I couldn't keep up!

Cleo Libonati spoke about nutritional deficiencies in celiac disease. Acoustics were very hard for me with her particular voice and I was on my third hour of taking notes... I don't have much here. She spoke about a lot of medications contributing to nutritional deficiencies, what foods contain certain nutrients, I think I did hear her say that ALL oats have gluten, no matter what. She was mobbed afterward, so I never got to ask for clarity. Interesting...

Everyone, by the way, seems to be a proponent of pre and probiotics.

A very rough summary, admittedly, but hopefully some useful information or at least resources to look up if you're feeling stuck.

On to Cyrex Labs. You will find them if you Google it. The Gluten Intolerance Group last July had Cyrex Labs exhibiting at the annual conference. They have several new blood tests (has to be set up thru your physician), but the set I was most curious about  was cross-reactive foods--- foods that your body produces antibodies to, as if it were perceiving it as gluten. Now, I've felt fabulous since going gluten free. Zero complaints, but I did this test anyway. They are supposed to be helpful to those who are gluten free but do not feel better. What a surprise my results were. I have not yet decided what I'll do about it!

I got "out of range" results for oats, coffee, sesame, buckwheat, millet, amaranath, tapioca, teff, and rice, and then an "equivocal" result for casein, yeast, sorghum. Interesting, and to my relief, I showed no issues with eggs, corn, potatoes, cow's milk, or quinoa. I called the lab to inquire about what some of this means, and was told that because they are a lab they cannot answer questions, as it's a "conflict of interest." Your labs go to your physician, but my doc and I didn't really discuss it, as we had other business too. So I advised them they might put on the FAQ section of their website that they will not answer questions. I pressed for some of the more technical stuff, like what does "equivocal" mean. They said it means if I keep eating it, I'll be out of range. I asked how recently do you have to eat this stuff to get results... they said 3 months. What I am most curious about is that I HATE coffee. Don't touch the stuff, never have. Don't like coffee-flavored anything... I just don't go there. So how could I test positive for it? They suggested that it's been hidden in something I eat. Well, I just said I hate it, so I doubt it, and secondly, I'm gluten free, so I read labels. I am skeptical. Does that mean my body formed antibodies to it from my tastes from 30+ years ago? Does it mean my mother drank it while pregnant with me and I was born with antibodies? I dunno.To my knowledge, I also have never consumed teff, but it could have been hidden in a gluten free bread or flour blend and I'm just forgetting...same for amaranth. 

If I follow these results, it rules out all gluten free bread and plenty of other stuff. I consume most of this at a minimum anyway, but I do eat some cheese,the occas. steel cut oats, the occasional GF sandwich or GF pizza... I put a tablespoon of milk in my tea and cheese on my salads or romaine roll-ups, as I call them. So I have been doing a lot of reading on The Paleo Die as a result. Intuitively it makes sense.... and there is a lot of variety if you do a little research. So we shall see. Maybe I'll feel even FINER than the FINE that I thought I felt before if I remove these things! We shall see. :-)

Be well, everyone. My updates are infrequent, just due to my schedule, but our group is around should you need help.

Until next time!

Tuesday, April 10, 2012

GIG Meeting April 26 at 6:30

Hello All,
This is the email (edited slightly) I just sent to our group, at the risk of not repeating:

Hi Gang,

I hope, hope, hope after this meeting to better understand what GIG National wants in terms of a group structure, get some officers, get some help, and get better organized! In the meantime, let's meet on Thurs April 26 from 6:30 to 8, in Linda Armada's office again in the Medical Arts Building behind North Florida. I know this is not ideal for everyone, and I hope we can figure this out, but it was group consensus as more convenient for most last time.

I have some notes to share from presentations at the St. Pete Gluten Free Expo, and a few goodies to sample that I picked up (black bean chips?). I can share my results from Cyrex Labs about the cross reactive foods, and what they told me in terms of "interpretive info" (and I use that really loosely!). Let's make this a potluck and please bring something to munch and share so that no one has to starve. If you have the time actually to make something rather than bring some storebought cookies, we'll be better fed... just do what you can. :-)

PLEASE TELL ME IF YOU PLAN TO COME SO WE HAVE A ROUGH IDEA ABOUT SPACE, DRINKS, ETC.
PLEASE LET ME KNOW BY APRIL 19 so we have about a week to plan.
Thanks!

Janet
P.S. I glutened myself swiping some icing off my manager's birthday cake last week. What a cruel reminder of how important this stuff is, and how critical it is that we understand it thoroughly and assist anyone who is new! :-)

LINDA-- Thank you for your assistance in securing us a space!