Posted by mareserinitatis in food/cooking, societal commentary.
Tags: celiacs, cooking, food, gluten, gluten free diet, health, low-carb
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 months years ago.) My friend Kari posted an article about this on FB:
The 3 million Americans with celiac disease and all those traumatized against grain by the Atkins craze a decade ago will soon be shopping with ease. The Food and Drug Administration, after a six-year delay, has set new standards for what food can carry the label of “gluten free.”
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.
Posted by mareserinitatis in personal.
Tags: celiacs, Fargo marathon, running
I haven’t been giving my monthly running updates because, since June, I haven’t been able to run. At least, not until earlier this month.
It turns out that I had tendonitis in my ankle. It took quite a while to heal up (nearly 3 months), and I got outfitted about three weeks ago with some custom supports to prevent this from happening again.
I’m excited to be running again because as soon as registration opened up for the Fargo Marathon, I decided to go nuts and signed up to do the half next spring. I’m using a very basic-level plan that takes 35 weeks to prepare. So yes, I’ve already started training.
It’s a run-walk program (one of the Jeff Galloway plans), and part of this is establishing the proportion of the time spent running versus walking. I did my first time trial last week and discovered something strange: I’m faster than I was last spring, even after three months of no running. I also discovered that doing the walk-run combination, I’m nearly as fast as just running…and a lot less worn out when I’m done.
I’m guessing the increase in speed is due to my change in diet. I have been getting a lot of comments about how I look like I’ve lost weight (despite the fact that I haven’t) in the past couple weeks. I think it’s simply a result of the inflammation going down now that I’m not eating gluten-filled foods any more. I guess this is another way to tell things are healing up.
I’m also signed up to do the Jingle Bell Run at the beginning of December. It’s a fundraiser for the Arthritis Foundation, so if you care to sponsor me and/or my team, click here. (Also, I appreciate efforts to sponsor me because my teammate is the lead fundraiser so far, and she’s making us all look bad.) ;)
Posted by mareserinitatis in science.
Tags: annoying people, blogging, celiacs, gf diet, gluten free diet, health
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.
Posted by mareserinitatis in education, Fargo, personal, teaching.
Tags: celiacs, health, running, school, teaching
I may be in the minority, but I really, really hate the fact that school starts here this week. I’m of the opinion that school should not start before Labor Day and should not go past Memorial Day.
Part of me would like to say that this dampens my productivity, but I’m not entirely convinced of that. I think it just lowers my stress-level to not have to worry about running kids around while teaching and trying to get some research done. I just hate being tired all the time.
Another reason I’m tired is that I’m still not running. I apparently had tendonitis in my foot, and most likely there was no sprain. I’m getting lots of ultrasound and massage treatment. It seems to have improved a lot, and in a couple weeks, I’ll have some new custom orthotics for my running shoes. Then I’ll get to start running again. This is good because aside from helping me from feeling so run down all the time, it does a lot to keep my mood up. I’ve been grumpy for about two months now.
I’m also getting used to being gluten free. It’s not all that bad, but I still can’t eat things with lots of fructose or lactose. Those problems should hopefully disappear as my insides heal up. I just wish I weren’t so hungry all the time.
But in the meantime, I better get finished with tomorrow’s class prep.
Posted by mareserinitatis in food/cooking, personal.
Tags: birthday, blogiversary, celiacs, gluten
It’s not my birthday today. I didn’t post on my birthday. But I thought I should mention it since that was one of the reasons posting has been light. I always like when my birthday shows up because I get to tell people all the famous people who share my birthday and watch as they look confused. I think it’s quite possibly the slowest day for celeb birthdays all year.
I also forgot about another milestone: I’ve been at this new spot on wordpress for over two years now. My second ‘blogiversary’ was July 1st. It’s kind of scary to think it was over 8 years ago that I signed up on LJ and have been putting crap on the internet ever since. (Actually, if you check the way-back machine, you can find the web page I put up in 1994. Yeah, I’ve been putting crap on the World Wide Web since 1994. Remember when we had web pages and not profiles? Just saying that makes me feel old.)
And mostly I wanted to let people know I’m still alive. I’ve been spending a lot of time researching gluten-free diets and am attempting to change some eating habits. I’ve managed to have small bits of fruit here and there, so fructose may be safe for me. Dairy still gives me fits if I don’t take lactase with it. And I have already discovered that one food I ate quite often and assumed to be perfectly safe was, in fact, very bad for me. (Who puts gluten in sausage?!) Our waffle Sunday breakfast menu will have some new items in the coming weeks.
I will have more productive things to say in the coming days, especially with the beginning of the semester. In the meantime, how was your weekend?
Posted by mareserinitatis in personal, Uncategorized.
Tags: celiacs, health, IBS
It’s been an exciting couple of weeks for me.
I have had a lot of medical problems…well, most of my life. It got really bad when I went to college, however, and a year and a half after starting, I found out I had fibromyalgia. I was 19 at that point…the youngest FMS patient most of my doctors had ever seen. In an effort to get a hold of my health, I started a restricted carb diet about 3 years after my diagnosis. Low and behold, I went into remission…something else most doctors had never seen.
About 3 years after that, however, I started having GI issues. First doctor I went to said I was just constipated and needed to drink more water. Second doctor thought I had GERD and abdominal tendonitis. Third doctor told me to take beano when I ate. As time went on, however, the symptoms got worse, leaving some doctors scratching their heads. I’ve had tests and ultrasounds on my gall bladder about 4 times, at least 3 cat scans, a multitude of blood panels drawn, 3 or 4 trips to the ER, etc. The one that really pissed me off was the diagnosis of “anxiety producing IBS”. The problem with both IBS and fibromyalgia is that there are a lot of doctors who think that this is all in your head. Problem is, the meds make you feel stupid and careless but don’t do a thing for your GI symptoms.
So I was relieved when I was finally sent to a GI specialist in 2009, about 8 years after my GI symptoms had started. He did another blood draw and did a breath test, and I was diagnosed with small intestinal bacterial overgrowth. Like all my other diagnoses, I was better for about a month after beginning the new medication, in this case a super-duper expensive antibiotic. He also sent me to a pain clinic to load me up with cortizone shots. They helped…for a while.
After moving back to Fargo, I spent a year and a half trying to get into a GI specialist here. My regular doc was convinced I just had GERD. After an abnormal catscan resulted from an ER trip, I finally got in to see him.
This doctor, for a change, has been approaching my issues like a scientist. Rather than saying, “You’re symptoms are consistent with xxx diagnosis,” he’s actually been going in and *looking* to see what’s inside me. He’s trying to rule out everything he possibly can. While I admit I really haven’t been enjoying all the fun dietary gymnastics for these procedures, I finally have an answer.
I probably have celiacs disease. There’s a good chance this has been my problem all along, maybe even being the cause of my FMS. (This is apparently a pretty common misdiagnosis.)
The most frustrating part, however, is not that it’s taken this long to figure out what’s going on. I can understand when so many diseases present so many similar problems that it would be hard to tease out the root of the problem, especially when I didn’t start with GI symptoms. However, the first GI specialist I saw gave me the blood test for Celiacs, and it showed up negative. The information on the test specifically states, however:
A negative result (absence of circulating IgA-endomysial antibodies) does not exclude the diagnosis of dermatitis herpetiformis or celiac disease. Patients with mild gluten-sensitive enteropathy may have a negative result.
I am very disappointed that the first GI didn’t follow up further. Although this has probably been going on for half my life (or more), three less years of problems would’ve been nice. Also, this led me on years of a wild-goose chase to figure out exactly what the issue was. I always excluded wheat as a possible factor because I was told the test was negative, leading me to omit from my diet a lot of foods that I probably could and should have been eating.
In the meantime, I have one final test to confirm the diagnosis and then can start on a gluten-free diet. I honestly don’t anticipate this will be as huge a problem for me as some other people given I’d already spent years watching my carb intake and really enjoy eating veggies. (I just never thought to cut out gluten entirely.) However, I do like a treat now and again, so I’ll be on the hunt for some good gluten-free donut recipes…
I also blog at Engineer Blogs, home away from home to some of the best engineering blogs.
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
12 comments
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.