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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.

Traveling off the wheaten path April 20, 2014

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One thing I discovered pretty quickly is that I am incredibly sensitive to even small amounts of wheat/gluten.  I am finding that this makes traveling with celiac disease a lot more challenging than I ever anticipated.  It is also frustrating as one of my favorite parts of traveling used to be finding all the cool places to eat.

Unfortunately, travel seems to have become a fairly regular thing for me now, so I’m having to get used to it.

I’m learning some things that help.  First, I have to either be sure there are places I can eat that are reliably gluten-free, or I have to get a hotel room with a kitchen.  (I’ve become a fan of places that end in “Suites.”)  I’ve also discovered that Whole Foods and Trader Joes are my favorite pairs of words when I travel (although probably Whole Foods, moreso).  Planning ahead is pretty vital.

The gist of it is that a trip that involves me driving usually involves me packing a bunch of food to bring along, maybe even a cooler.  If I’m flying, which was the case earlier this month, I have to have a hotel room with a kitchen and a rental car to go pick up food.  I also then have to find this balance between having the right food and not overdoing it so that I don’t leave food to feed an army in the fridge when I leave.

So what do I eat?

I usually do sausage (assuming I can find a safe brand) and scrambled eggs with peppers for breakfast.  Lunch involves salad with chicken (I can usually find precooked breasts or sandwich meat, although I will cook it myself in a pinch) or hardboiled eggs.  For sides, I like baby carrots, and I can even make a very simplistic potato salad fairly easily.  I’m finding there are a lot of packet sizes of things like coconut oil or other stuff that comes in handy as condiments.  If I need something that I can’t get in packets, I just try to buy the smallest available size.

I usually find a place for dinner, but if not, there are options in the frozen foods like fish sticks or corn dogs (with more salad and carrots, of course).  I’m always relieved when there’s a PF Changs nearby.  We don’t have one in Fargo, so not only do I get my Chinese fix, I can do it without any gluten.  And cookies…there are gluten free cookies out there.

Though it’s not the best, I also have a stash of M&Ms or something similar with me…because it’s a good idea in case schedules or something get off.  (While I don’t usually get sick any more, I can’t say I feel the best if I overdo it on snack foods.)

Believe it or not, I pack a few ziploc bags, a lunch box, and a blue ice pack into my suitcase.  I stuff the lunch box full of food before I leave the hotel room.  I imagine I look pretty sporting hauling it around with me (it’s a soft-sided, purple and pink box), but it at least removes the temptation to eat anything that could be dangerous.  And it’s better than spending half the trip sick in the hotel room…or coming back very sick.

The biggest inconvenience is the time it takes.  Going to conferences can be rather tiring, and some days are very long.  If I can get there a day ahead of time, I can do a bunch of shopping and prepare food, which makes it easier.  I also go through and rewash all the dishes by hand before I use them, just in case someone didn’t do a thorough job and there are crumbs or other things on there.  (I imagine this is a good idea, either way.)

I’m getting more practiced at this and finding that it’s not as difficult now that I’m getting better at it.  I don’t even get too many comments about my lunch box any more.

Post Christmas food frenzy: socca bread December 26, 2013

Posted by mareserinitatis in food/cooking.
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I realize I haven’t been posting much the past couple months.  While I’ve been busy teaching and with work, the real reason is far more sinister: I’ve been cooking.  Constantly.

Since my episode last fall, one problem I’ve continued to have is tingling in my feet…what doctors call parasthesia.  While they didn’t find any nerve fiber damage, I have found out that this could either be a result of my bad reaction to the medication that set things off…or it can also be a response to gluten.  People with celiac disease, it turns out, have a higher than average chance at having neurological issues, and even trace amounts of gluten will cause the problem.

In that vein, we have cut out the vast majority of processed foods in our diet, most of which were ‘gluten-free’ this and ‘gluten-free’ that.  The result of that, however, is that I cook a lot more than I ever used to…and I used to cook a lot to begin with.

So…because I have been so busy cooking, I figured I would share some of my favorite recipes so far over the next couple days.  If nothing else, it will make them easier for me to find later on.

The first one is for socca bread, which is apparently a French-based flatbread.  I have been looking for a substitute for pita bread as one of our favorite regular meals is gyros.  I discovered that while there were a lot of various bread alternatives, pita wasn’t on anyone’s radar.  After finally giving up, I came across this post on The Patient Celiac (which is an awesome blog for all things celiac, BTW).  It included a recipe for socca bread, which sounded like a good pita substitute.  I tried it, and like most gluten-free bread options, it crumbled as soon as you folded it.  That’s fine if all you’re doing is smearing hummus on it, but not so much if you’re trying to put meat, lettuce and tsatziki in there…

I wasn’t giving up, though.  As I have become more versed in gluten-free baking, the solution soon became obvious: tapioca flour.  I changed the recipe by substituting tapioca flour for 1/6th of the chickpea flour.  Voila! Foldy flatbread, perfect for making gyros.  So here’s my version, which is most definitely not traditional and makes a bigger batch than the linked version (the excess freezes well):

3 cups water

2 1/2 cups chickpea flour (or garbanzo flour)

1/2 cup tapioca flour

4 1/2 tbsp olive oil + more for cooking

1 1/2 tsp salt.

All of the above ingredients are mixed well and left to sit.  (Ideally, you’d want to let it sit for about 24 hours to maximize fermentation and hence nutritional value, but it depends on how far ahead you’re thinking.)  You can also add spices, as the linked version suggests.  I particularly like rosemary, myself.

To cook, I put approximately 1 tsp of olive oil in a heated six inch frying pan.  I add around 1/3-1/2 cup of batter and let it fill the bottom of the pan, flipping once the top is mostly dry.  I’m using a sort of crepe-cooking method, although the linked version has a couple different ways to make this, like broiling.  My bread is also smaller than the linked version.

And that’s it!  So…I now have a substitute for pita bread, and as long as the garbanzo flour is processed in a gluten-free facility, I shouldn’t even have to worry about trace gluten in the bread.

I hate having celiac disease November 9, 2013

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This week has been one of those days where I have to remember that I have a lifelong disease, and it can really suck.

I have been sick for the past month or so.  I knew I had eaten gluten from my symptoms, except I wasn’t sure what I would have eaten.  I’m pretty meticulous about my diet.  However, most of the reason I’m meticulous is because I don’t buy a lot of processed foods.  When I get into a situation where I can get processed foods, I sometimes run into trouble unless I check every little thing.  And it’s hard to remember to do that sometimes, especially when you don’t have to worry about it at home (too much).

Today, for example, I decided I wanted to experiment with some cooking, and so I bought a box of Rice Dream (rice milk, for those of you not in the know).  It says gluten free right on the box.  But then something clicked, and I looked it up.  It turns out that Rice Dream is sweetened with brown rice syrup, and some types of brown rice syrup are made with some sort of barley enzyme.  A lot of people with celiac disease have problems with this drink.

That’s when I realized why I’ve been feeling so cruddy for the past month: someone offered me some really delicious nut clusters.  I remember scanning the back of the bag and being pleasantly surprised I could eat it because the only ingredients were nuts and brown rice syrup.  I had a handful of them, and thought I ought to go pick up a bag when I have the chance.  What a great travel food!  Except, not so much.

And I’m discovering the sad truth that when I do have gluten, even tiny amounts, it can take weeks to recover.  I’m back to not being able to eat any fruit but bananas, when I was happily able to munch on strawberries and raspberries just two months ago.

The other problem is going out to eat.  Mike and I recently went to one of my favorite restaurants for dinner.  They have a gluten-free menu and have been great in the past.  This time, it was obvious the server had no clue what was going on.  He plunked the bread basket (yeah, basket…with holes) on top of the appetizer plates…so obviously I wasn’t going to be using those (or at least the top one).  Then I ordered an appetizer.  Someone brought it out as the server happened to be walking past.


“Excuse me, but I ordered this gluten-free.”

“Well, yeah.  The appetizer itself is gluten-free.”

The gluten-free appetizer had four slices of toasted focaccia smothered in herbs and olive oil placed directly on top.  It was very pretty, but all I could think was a string of expletives.  Fortunately, the guy bringing the food out understood this was a mistake and said he would have a new one made.  I decided that if came back out within two minutes, I wasn’t going to eat it because someone had just pulled the bread off…

Yes, I’ve gotten sick from toast crumbs.  This is how bad it gets.  This is why I can’t have food that’s been anywhere near food with gluten in it.

So for those of you who don’t have celiac disease, I hope you can understand why some of us are so particular about our food.  If you offer us something, it’s not that we don’t appreciate the gesture, but so few people (except maybe those with food allergies) understand what it’s like to feel like every bit of food not prepared with our own hands is a potential landmine bringing weeks of illness with it.  It’s not that we don’t like you…it’s that no one likes to be sick.

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.

It’s my birthday, and I’ll post if I want to… August 14, 2012

Posted by mareserinitatis in food/cooking, personal.
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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?


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