Bring back science 1.0 September 19, 2012
Posted by mareserinitatis in science.Tags: annoying people, blogging, celiacs, gf diet, gluten free diet, health
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Given my recent induction into the world of celiacs disease (CD), I’ve been spending a lot of time researching it. I’ve been trying to spare all my blog readers the gory details, but I hope you’ll realize that this isn’t a normal post about the trials and tribulations of one dealing with CD. In particular, most of my time is spent looking for the gluten status of foods. (I thought I was happy to have an iPhone before, but now it’s become a necessity in the grocery store!) One night, while looking up some information, one of the hits ended up being to the post, “Celiac: The Trendy Disease For Rich White People.” The post is located on the site Science 2.0, which seems to have both original content as well as aggregated articles.
I was very disturbed by the post. I was even more disturbed when I found out that the author, Hank Campbell, was the founder of Science 2.0.
I’m not at all impressed with his science…at least on this topic. If you don’t want to read through the post, I can summarize by saying that Mr. Campbell claims that the only people who have a valid reason to go on a gluten-free diet are those who have a diagnosis of Celiac’s disease. His justification for this is a single study showing that a gluten-free diet doesn’t result in weight loss for most people. Everyone else who is doing it is following a fad, and their non-scientific thinking means they need to be lumped in with groups like anti-vaxers. GF is the trendy thing to do, and following a GF diet when it’s not medically indicated is just the trendy thing for rich white folks to do.
The whole article is a rant that only displays the ignorance Mr. Campbell has on this particular topic. First, he throws out the number that 97% of people who have CD probably don’t know they have it, mocking it. What he’s mocking are statistics from the University of Chicago Celiac Disease Center. The document in the previous link points out that there is both a huge correlation between autoimmune diseases in general and celiac disease in particular. It also points out that the standard symptom of CD (GI issues) is only present in about 1/3 of those who are diagnosed with CD. On average, it can take several years from the onset of symptoms before one actually gets a diagnosis. (I can vouch for that given I have had symptoms for most of the past three decades and had an incorrect diagnosis of fibromyalgia when I was a teenager. The fibromyagia seemed to go away after a couple years on a low-carb diet, much to the puzzlement of several doctors. Apparently this particular misdiagnosis occurs in about 10% of CD patients.)
There are several non-GI symptoms that can indicate CD, but most physicians are unaware of them (for instance, anxiety). There is also the problem that people with undiagnosed CD are likely to develop a range of autoimmune disorders, such as Hashimoto’s diease, Lupus, and Rheumatoid Arthritis. (In fact, someone I know was recently told by their rheumatologist that they may want to try a GF diet to see if it helped with their RA symptoms.) In most cases, these other disorders are discovered BEFORE it is determined that a patient may have CD…not the other way around.
Getting out of the realm of CD, there is also a lot of work being done on non-CD gluten sensitivity. There are a number of people who apparently have a sensitivity or intolerance to gluten without developing CD. They estimate there are about 6 million people in the US with gluten sensitivity. Unfortunately, there is no biological marker for it. The only way one can tell if the patient with symptoms goes on a GF diet, although there are studies underway to find quantitative tests showing an immune response.
So let’s go back to Mr. Campell’s “discussion” of the topic. With a little work, he could have learned that his whole “when I was a kid, CD was a serious disease” may have been true. Although he was implying it is overdiagnosed, it turns out that levels of CD are 4 times what they were 50 years ago. There seems to be an uptick in diagnosis not only because of better diagnostic tools but because something has changed in American’s diets. (One speculation mentioned in the Wall Street Journal article is that wheat has been bred to provide greater concentrations of protein.) However, one can also look at the information above (and in the links) and easily conclude that CD is also incredibly difficult to diagnose. There are over 100 symptoms linked to gluten intake, and as I mentioned before, often the associated autoimmune diseases will be diagnosed before CD is found.
Mr. Campbell then goes on to ridicule people who try a GF diet without a diagnosis and then claim it improves how they feel. Let’s see…how does one diagnose non-CD gluten sensitivity? At this point, one goes on a GF diet to see if they feel better, then they tell their doctor. As far as I can tell, people are trying to pay attention to their diet and connecting it to how it makes them feel rather than waiting for them to have their doctor tell them to do something. Imagine that…people taking initiative to improve their health. Given non-CD gluten sensitivity may occur in as many as 1 in 20 individuals, as well as the diverse number of symptoms linked to gluten ingestion, likelihood of such a diet being successful in helping someone to feel better are actually pretty high.
Finally, Mr. Campbell attempts to make the argument that all this ‘fad stuff’ is hurting those of us who have CD. As you may have noticed in the approximately 450 comments, he’s dead wrong. All of us are ecstatic about the awareness of the disease, the variety of grocery and dining options, etc. How can this be hurtful to us? Further, many of us have had to deal with years of symptoms, and I don’t think anyone honestly wants others to have to deal with it. If someone is trying to fix their diet and tries GF, good for them. My guess is that they aren’t faking it, as Mr. Campbell implies. In fact, I honestly don’t understand why he would think people would go through the pain of adopting a GF diet unless they really were concerned about their health.
The whole article is an example of ignorance about the topic, and it’s particularly disappointing that this is what passes for science blogging. If this is Science 2.0, I think I want 1.0 back.
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The difference a diagnosis makes August 6, 2013
Posted by mareserinitatis in food/cooking, societal commentary.Tags: celiacs, cooking, food, gluten, gluten free diet, health, low-carb
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I’m almost upon the 1 year anniversary of receiving my official diagnosis of celiac’s. It’s a happy thing for me because I’m feeling and looking far better than I did a year ago despite the fact that I still have a ways to go. I’m still waiting for my ability to digest peaches to be restored.
To celebrate, the FDA has just released new regulations stating that gluten-free items must have under 20 ppm of gluten. (Coincidence…but they were supposed to have come out with a decision on this
monthsyears ago.) My friend Kari posted an article about this on FB:It was an interesting article, but their whole ‘gluten-free is just a fad’ undertone got on my nerves. I’ve seen a lot of articles like this (I discussed one at length in this post).
This sort of thing gets on my nerves because for years I had to listen to people tell me how my low-carb diet was a fad and not healthy for me. I went on a low-carb diet at the age of 22 because I had fibromyalgia (*ahem* not really, but I didn’t know that then) and having weight problems. Miraculously, I got better after going on the diet. (Not so miraculous now that I know what I have.) However, the fact that I felt better and lost weight didn’t phase people. I continually heard from doctors how I was going to end up with high cholesterol, how the weight I’d lost was ‘water weight’ (ummm…I’m sure that 80 lbs. was all water), and on and on. I was flummoxed: I was told I needed to lose weight but once I did, I was lectured on how I did it the wrong way. As a side note, the fact that I was no longer in pain and my fatigue had gone away were irrelevant.
Going to any social gathering was even worse. I would be rather careful about what food I ate (and I never felt I was overly picky…just asked them to please hold the bun or whatever), but it never mattered. Inevitably, some stranger would come up and begin lecturing me on my poor food choices. I came to the conclusion that there were really a lot of busy-bodies out there who had nothing better to do than search out people who really weren’t looking for any advice on their diet in order to fill their ear.
I’ve been putting up with this for 15 years. I can no longer count how many times I’ve had to justify to ‘strange’ dietary choices to people. And the funny thing is, they never want to hear how as a vegetarian/vegan or on a normal diet, I actually grew sicker. (Celiacs, it turns out, impairs the body’s ability to digest protein.) The implication was that I must not have been doing it ‘right’…whatever that means. The fact that, in the last few years, it wasn’t working was an additional reason for people to come out of the woodwork and criticize my choices…nevermind that what they were telling me was exactly the wrong thing to do.
Now that I have the magical diagnosis, it’s amazing how differently people react. I always bring my own food with me to social things. If someone asks, I just say I have celiacs. Rather than telling me how unhealthy my diet is, I most often get the observation that I am eating very healthy. No one grills me about why I eat the way I do or tells me that I’m making poor choices anymore, but they ask questions about how I handle it and what things I need to look out for. Occasionally, I will get comments about how they know someone who has celiacs, as well. In fact, in the past year, I have had ONE negative comment about how gluten-free diets were a fad…and that person was obviously so woefully uninformed about that (and several other topics) that I didn’t bother wasting too much brainpower on him.
This has me stunned. The reason why I’m stunned is because I’ve hardly changed my diet at all. It was very easy to transition to gluten-free because all I really needed to do was cut out a slice of bread or a dessert here and there. (Okay, so I did have to cut out my favorite Chinese restaurant permanently, and I do have to buy all gluten free soy sauce, which is a bit of a pain.) Most of my diet was already protein and vegetables, and I’ve really found that sticking with that has been pretty easy as I’d already been doing it for 15 years. The only major difference I’ve noticed is in people’s perceptions.
This is why I get frustrated when I see these judgmental articles about how people who are doing things ‘gluten-free’ or ‘low-carb’ are just following a fad. I don’t suppose it’s ever occurred to the writers of such articles that food can have a profound impact on how your body feels and that, just maybe, some people really are paying attention to that. People don’t like to be sick or fat or tired all the time, so if they say something is helping them to feel better (particularly when 40% of people with celiacs have no symptoms), then I’ll cheer them on for making healthier choices.