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Malevolent butterflies in the stomach June 7, 2014

Posted by mareserinitatis in engineering, papers, research.
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I’m sitting at my computer this morning with somewhat bated breath.  I was supposed to be presenting a paper at a conference about now.  Instead, I am at home, and my major accomplishment was getting out of bed and getting dressed.  Oh yeah…and I ate a bagel and a banana without getting sick.

I was on my way to the conference and decided to leave a day early.  I was going to spend the night in Minneapolis with some friends and then continue on the next morning from there.  I was doing great until about a half hour before I got there, and then I started having stomach issues.  The problem with having celiac disease that was undiagnosed for so long is that I’m *always* having stomach issues, and I more or less ignore them now.  “Oh gee.  I must’ve eaten something that didn’t agree with me,” is one of the most common phrases I’ve used over the past five years.

I met my friends for dinner and then went back to their place.  I found that the stomach pain kept getting worse, though it was coming and going intermittently.  After about two hours, I needed to go to the ER because I was in very serious pain along the bottom of my ribcage.  I spent the next couple hours getting checked for gall stones and pancreatitis and losing my dinner and getting lots of drugs.  The doctor’s conclusion is that I either had a bug…or I did eat something that disagreed with me.  The only problem is that I have no idea what it could have been.

Fortunately, a colleague was also attending the conference, and he agreed to give my presentation for me with the consent of the session chair.  I got to come home (which is a long story in and of itself), and rather than worrying about how I was going to do on the presentation, I get to worry about how my colleague will do.

The whole situation is ironic, however.  I’ve always told people that I get sick to my stomach before I have to give a presentation, but I guess this time it was literal.

The symptomatology of a glutening June 2, 2014

Posted by mareserinitatis in food/cooking.
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I’m going to be traveling later this week, and I realized that I am slightly terrified after having a bad ‘glutening’ over a week ago.  I went to Jimmy John’s and ordered a gluten-free unwich.  Then, without thinking, I asked them to add extra lettuce.  The extra lettuce came from a bin into which people wearing contaminated gloves had been sticking their hands.

It was awful.

The first thing I noticed was during a run the next morning.  A couple friends and I were doing an 8-miler (and that’s a good thing to have friends for because it’s a LONG run without them).  My hand was really starting to hurt, and I asked them if their hands ever swell up while running.  Both of them said, “Yep,” and I didn’t think much more about it…until the next morning, when I couldn’t get up.  In fact, I spent three days unable to get out of bed because of crushing fatigue and horrible brain fog.  I desperately wanted to get up, but even when I managed it, I would do something inconsequential, become exhausted, and not be able to focus on anything anyway.  And pain all over my body.  Not achiness, like the flu, but pain and swelling.  GI symptoms started two days later.  And then a week after that, with still swollen hands, I developed a rash (probably dermatitis herpetiformes (DH)…I still have purple marks) all over my right wrist with a couple spots on my hand.  At first I thought it was poison ivy, but I hadn’t been anyplace where I would get it, and the rash was too diffuse.

I had this fantasy that maybe, once I’d been off gluten for a while, the reactions wouldn’t be so severe.  I was wrong and they’re actually worse.  (While I had skin problems most of my life until getting rid of the gluten, the DH is something entirely new.)  I am terrified something like this will happen on a trip and I’ll be laid up the entire time.

This is me after a glutening.  I don't think this would work well at a professional conference.

This is me after a glutening. I don’t think this would work well at a professional conference.

On the up side, it really does make me appreciate how much better I feel the 99% of the time I have managed to avoid gluten.  I like not feeling sick and exhausted and brain dead all the time.

The norovirus diet April 26, 2014

Posted by mareserinitatis in personal.
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A few years ago, rotavirus became a bad word in our house. The younger son was a baby and caught it daycare. Being the sharing kind, he gave it to the rest of us, and we all got very sick. In fact, Mike ended up in the hospital for a couple days.

This week, we got acquainted with rotavirus’ cousin, norovirus. They’re amazingly alike, except that norovirus is even more pestilent. Mike got to go to the hospital again after passing out. Fortunately, it was a short visit and they booted him after making sure he was sufficiently hydrated.

We’ve spent the last couple days enjoying foods that are usually not allowed in the house: Gatorade, lemon-lime soda, jello, and store-bought bread (gluten-free). It amazes me that I can eat junk food like that and lose five pounds overnight. To be honest, though, I was okay with my pre-virus weight…and I certainly enjoyed the diet more.

running update: 23 months September 22, 2013

Posted by mareserinitatis in family, older son, running.
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I went for a run today for the first time in a month.  It was nice, particularly since I could actually feel my feet the whole time.

Yeah, that sounds strange, doesn’t it?

I haven’t run the past month because I ended up in the hospital.  Some of you may recall that about a year ago, I had a bad reaction to some medication.  Some of my doctors have been dubious that this was the case, however, given the reaction was extremely rare.  (By extremely rare, I mean I-managed-to-find-a-whole-three-medical-case-studies-on-pubmed rare.)  I was given the medication again, and this time I had a similar reaction, only it didn’t stop when I stopped the meds…and I ended up spending some time in the hospital.  Some of my (two) readers may have noticed I didn’t post much a couple weeks ago.  That’d be why.

As an aside, while the hospital food wasn’t all that bad, I was very ticked that they put me on a ‘heart healthy’ diet despite my complete lack of metabolic disorder.  I suspect I may have gotten some gluten contamination while there, as well.  My husband has been informed that any future trips to the hospital will require him to cook and bring me food, which he thankfully said he’d do…although it may just be a lot of gluten free egg rolls and scrambled eggs.  :-)

The good news is that things are getting better…I can stand long enough to teach my classes without getting dizzy and, as I said, feel my feet again…most of the time.

Needless to say, this is putting a bit of a damper on my race plans.  I had planned to run a 10k next month with the older son, but I’m trying to take it slow.  I’ll probably just try the 5k.  I was initially rather upset that I’ve been running for almost two years now and am having to start over.  However, after my run this morning, I came to an important realization: I ran more than I had planned because it felt good to get out and move.  My body knows what it’s doing now, so I’m really not starting over…just giving myself some space.

The difference a diagnosis makes August 6, 2013

Posted by mareserinitatis in food/cooking, societal commentary.
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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 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.

New year’s…ahem…goals, Pt.1 January 1, 2013

Posted by mareserinitatis in personal, running, younger son.
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It’s very easy at the end of every year to look at the numbers on the scale and feel disappointed that they aren’t smaller.  Or I can take measurements of my body and be upset that my diameter is definitely not where it should be.

It’s frustrating to me because I watch my diet fastidiously and am very physically active (well, when I’m not in front of the computer).  But here I am.

Granted, this year has been been better than most as a result of my celiac diagnosis.  I’ve been on the diet about 4 1/2 months, and it’s unbelievable the amount of positive feedback I’ve gotten about how much better I look.  So obviously things are going well on that front.  However, progress, as always is slow.

I also am not one to make resolutions as they can be easily dropped.  So instead I set goals.

I never try to set the goal of reaching a certain weight or size.  It turns out that since I started the celiacs diet, I haven’t really lost more than about 5 pounds.  However, people tell me constantly that I look it.  And, from what they’ve said, they think I’m lighter than I am.  Mike has made the observation that I appear to be denser.  However, after that comment almost resulted in physical violence, he amended it to “more compact”, which was, in my opinion, a more agreeable euphemism.

My goal, therefore, is to continue to improve my health by watching my diet and running.  (In fact, I have already signed up for a half-marathon in May.)  I am hoping that my efforts toward these goals will result in weight loss, but I will try not to shoot for a particular number.

There is one thing that makes me sad about my becoming “more compact”.  When the younger boy was about 4, I remember him wanting to cuddle on someone’s lap.  He decided to try dad’s lap as it had the closest availability.  He went and sat down on Mike’s lap…and proceeded to wiggle around for five or ten minutes, obviously unsettled.  He got off Mike’s lap, looking disappointed.  Then he came and sat on my lap.  With just a few minor adjustments, he ended up completely still with a contented sigh.

“Mom, you’re soft.”

I want to be healthy and will work toward that, but I want to be soft enough for little boys to want snuggle on my lap.

Bring back science 1.0 September 19, 2012

Posted by mareserinitatis in science.
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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.

Stupid school year August 20, 2012

Posted by mareserinitatis in education, Fargo, personal, teaching.
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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.

I will never attend another bake sale August 7, 2012

Posted by mareserinitatis in personal, Uncategorized.
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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…

Chronic illness July 23, 2012

Posted by mareserinitatis in family, personal.
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I’ve had a lot of stuff going on, so the blogging has been light.  I also have a lot of things I’d like to talk about, but the blog isn’t the best place to do it.

However, I’d like to throw out some questions.  For those who have a family member with a chronic illness (of any kind), I’d like you to comment on how you deal with it.  Specifically, how do you handle financial concerns related to treatment costs?  How do you avoid feeling ‘trapped’ when helping support the person who is ill?  And finally, how do you deal with all the other people who just don’t “get it”?  What kind of support have you been able to get and how difficult is it to find?

Please feel free to comment anonymously as I know this is a touchy subject.  I’d just like to see what brilliance the intertubes can provide this week.

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