Monday, January 31, 2011

Gluten-free January Participants: Take the Survey!

Matt Lentzner, Janine Jagger and I have designed a survey for participants of Gluten-free January, using the online application StatCrunch. Janine is an epidemiologist who studies healthcare worker safety at the University of Virginia; she has experience designing surveys for data collection so we're glad to have her on board. The survey will allow us to systematically gather and analyze data on the results of Gluten-free January. It will be 100 percent anonymous-- none of your answers will be connected to your identity in any way.

This survey has the potential to be really informative, but it will only work if you respond! The more people who take the survey, the more informative it will be, even if you didn't avoid gluten for a single day. If not very many people respond, it will be highly susceptible to "selection bias", where perhaps the only people who responded are people who improved the most, skewing the results.

Matt will be sending the survey out to everyone on his mailing list. Please complete it, even if you didn't end up avoiding gluten at all! There's no shame in it. The survey has responses built in for people who didn't avoid gluten. Your survey will still be useful!

We have potential data from over 500 people. After we crunch the numbers, I'll share them on the blog.

18 comments:

Tuck said...

Maybe I'm being dense, but where is the survey?

David Isaak said...

I continue to wonder if the gluten in wheat is really the issue.

Seitan is nearly pure wheat gluten. I've met people who believe they are gluten-intolerant who seem to tolerate seitan without problems. (A couple of them were shocked to learn it was gluten; they thought it was some sort of tofu.)

Is it possible there is some other component of wheat that causes the problem--something that is associated with the gluten, but that dissolves in water when gluten flour is washed to make seitan?

Charlie said...

cough. Or there is a significant overlap between "mentally unstable" and "gluten intolerant."

I'm down with some sort of flora theory. The only time I've had "gluten" intolerance is when I've had product with significant amounts of inulin. Gas, cramping, all the usual stuff. Small amounts, however, don't see to trigger it.

Stephan said...

Hi Tuck,

Matt will send it out to everyone on his mailing list.

Liss said...

@David,

Some people may have difficulty with the fructans in wheat. (See FODMAPs for more info.)

Seitan hurts my gut, but for me, the most violent gluten test was a product called Field Roast. It made me ill for hours after eating just a portion. I still foolishly assumed the fault was with my fussy stomach and didn't bother trying to figure why that food had made me feel like I'd ingested lava. Only years later did I realize I cannot eat gluten. Learning this changed my life vastly for the better.

Might-o'chondri-AL said...
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Ross said...

how do we get added to the list?

Amy said...

-Al,
I don't think scientists have even begun to understand digestive issues, especially when it comes to fructose/fructans. Keep in mind that people who have trouble digesting fructose usually have trouble digesting fructans and sorbitol. Sometimes, I feel like I have trouble digesting everything accept cheap starch. But, this article I linked to below discusses how the protein L-alanine helps children absorb fructose.

Facilitating Effect of Amino Acids on Fructose and Sorbitol Absorption in Children


There seems to be a lot more to absorbing food than gut bacteria and generalized over-eating. L-alanine appears to play an important role in digesting fructose. I speculate, that some of us, despite eating enough meat, might possibly be L-alanine deficient. An L-alanine deficiency could create difficulties in processing fructose/fructans.

There are babies and young children that suffer from fructose malabsorption. Most children that have fructose malabsorption cannot eat large amount of fructans. Their mothers, who often don't have any digestive issues of their own are scared to feed their children too many vegetables. Most of the time these children have bodies that will spit out too many vegetables/fructans.

barbara said...
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Might-o'chondri-AL said...
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Tony said...

Is it possible there is some other component of wheat that causes the problem?

This might be possible. Being one of those "mentally unstable" and being clearly and immediately free of angst, panic, depression and suicidial thoughts only after going wheat-free, milk-free, rice-free and I don't know what-else-free. I would think that we know not half of the problems associated with the consumption of cereal-grains (and maybe other "food stuff").

I think I will do some blinded challenge test with wheat and dairy, once I feel stable enough. But I don't think I'm over the hill yet...

Helen said...

@ David Isaak -

Gluten is definitely "the problem" for many people. But it very well could be not the only problem people encounter with wheat. I read an article in PubMed about how people who experience mental disorders from wheat, but who don't have celiac disease, have antibodies to a different gliadin than those who have celiac. So even problems with gluten can be pretty specific.

It does sound like a lot of folks have problems with fructans around here. Fortunately, I don't seem to be affected - got plenty of other food issues to deal with, so that's a blessing.

Personally, I like to call seitan "Satan."

Might-o'chondri-AL said...
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Tony said...

Thanks Might-o'chondri-AL! Yes, I most certainly know (now) that gluten are opioids and cause a real effect in me (didn't believe it even three weeks ago...).

I started to read Lutz in October after developing slight Diabetes Type 2 symptoms. So I reduced carbs and had panic attacks an hour after lunch - ups. So I cut out carbs completly (and thereby Gluten, which I was unaware at the time). And the panic was gone! The depression was only a shadow of the one before! Yeah!

After I stopped taking gluten (Just say no!) at the beginning of November the best was the enormous rebound from depression: An euphoria lasting from mid-November to mid-December. Wow. A euphoric rebound from an opioid that introduces depression!

But I think there is more at work with cereal-grains than only gluten. I had some tests made after stopping (sorry, wasn't that smart before and my doctor is my enemy and didn't want to do any tests...) and I know that my TSH is a bit high, my Cortisol is a bit low and flat, my DHEA is too high. This indicates (for me) slight hypothyroidism, and I would bet this is caused via an autoimmune reaction to cereal-grain (via WGA plus Gluten?). There is a connection between hypothyroidism and adrenal insufficency and between hypothyroidism and panic. So would bet this was the second attack vector against my brain. Remove grains, and the autoimmune thing goes slowly away and with it the hypothyroidism. Remove gluten and WGA, the leaky gut heals.

So a re-exposure would only lead to (mainly?) placebo effects? I don't know.

Amy said...

-Al,
Wheat flour is low in fructans. Reports vary: 0.9, 1.3-2.5g for 100g. And the amount of fructans may be reduced by cooking the wheat. But, the problem is that people who suffer from fructose malabsorption can't have more than 5 to 10 grams of fructans a day. Eating wheat all day, every day can have an accumulative effect on the amount of fructans that are entering your system.

The second problem with wheat is not all chains of fructose are created equal. The fructan in wheat is a very simple chain and it is fast food for gut bacteria. Hypothetically, rye doesn't create as many problems because the fructan chain is more complex and it is not absorbed by the bacteria as quickly.

Bifo-bacteria feeds on fructans. Bifo-bacteria increase nutrients like calcium in the body. But, I sometimes wonder if I have too much bifo-bacteria in my gut to begin with. Yet, it is possible if I produced more L-alanine in my intestine the bifidobacterium wouldn't over grow because I'd be able to digest fructans/fructans even faster. (Yes, I know the study I sent in, yesterday, had been done on fructose not fructans. But, I think that the fact that I can't digest fructose contributes to the fact that I can't digest fructans.)

Another issue is that if I keep my fructan levels at zero, I find I can tolerate foods with small amounts of fructose in them like: peas, grapefruit, sweet potatoes, blueberries and mushrooms.

Fructose malabsorption is a bit of a balancing act. But, it works much better than anything else I've tried for my digestive issues.

Here are some links:

Fructans in rye (PDF)
Fructans in Australian fruits and vegetables

The HealthNOW Doctors said...

Dear Tony and Helen,

There are over 60 peptides in gluten that are known to be inflammatory in nature but currently we only test for one - that is the anti-gliadin antibody test that is used to test for gluten sensitivity vs celiac disease.

Gluten clearly causes inflammation to the nervous system creating such symptoms as depression, anxiety, brain fog, migraines, ADD/ADHD, schizophrenia, and more -there is much research to support this.

It's important to know that when you clearly react negatively to gluten, any reintroduction can have long-term ramifications.

Gluten can continue to affect you for 3 months, after only one ingestion.

In addition, gluten is thought to be an initiator of autoimmune disease - the third leading cause of death in our country. (Thyroid disease can have an autoimmune component.) I have had patients who "cheated" one time too many and initiated an autoimmune disease that couldn't be completely remediated.

I wouldn't want that to happen to anyone.

Perhaps consider a dairy and rice "blind trial" but continue avoiding gluten.

To your good health,

Dr Vikki Petersen, DC, CCN
Founder of HealthNOW Medical Center
Co-author of "The Gluten Effect"

Laura said...

I would participate, but I'm pretty sure I'm NOT on the mailing list. And I failed anyway, although I did try.

TanyaL said...

Laura, those of us who are on Facebook and signed up there just got a link in our FB feed to the survey, so if you have a Facebook account and want to sign up there, you could just look a few days back for that.