*super relieved to say that last week’s doctor’s appointment went excellent. the test results showed that i’m low in protein and vitamin D (who isn’t?) but for the first time ever, my vitamin B levels are (almost) acceptable. the only additional thing i have to drop: eggs. turns out my body hates egg whites. so, no more eggs. i get to try to reintroduce them in september. this brings my enemy list to: gluten, dairy (except goat products), soy and eggs.
*this puts a major damper on my plans to break last year’s record (5) and eat 6 cupcakes from Ellie’s on my birthday next week. i’ve decided that in place of 6 cupcakes, i will dial down the sugar free-for-all and try only eating a little bit of coconut ice cream.
*last week, i tried 2 new things: venison & honey goat cheese.
*oddly enough, despite growing up in the country, i never ate venison; my family is not a hunting family. a friend of mine hunts and gave me venison steaks and some venison sausage that he made. they’ve been sitting in my freezer for at least 5 months. i’ll admit the only reason i wanted to eat any of it was because some one i knew actually killed the deer.
*it was surprisingly good. i overcooked it:
*second try was more pink and much better:
*another friend of mine found honey goat cheese that is (gasp!) animal rennet-free! now i can add this lovely Canadian cheese-making company to my list of goat cheeses made with vegetable rennet. note: my list had only 1, so it wasn’t much of a list.
*it was my first time eating goat cheese since christmas. i remember now why everyone loves it. after my salad, i just sat there eating it out of the package with a spoon.
*i’m still technically on the elimination/restore diet. i’m supposed to slowly add things back in every week or so. i can’t think of a single thing i miss eating right now, so that’s good news.
seriously: that’s a goal of mine. to never again have to drink any substance that comes in powdery form. i thought it was bad enough prepping for a colonoscopy last summer. i made it through that cleansing experience by dumping the entire powder mixture into a quart of organic sugar-packed lemonade and chugging it for an hour.
right now, i’ve graduated to UltraInflamx in mango flavor: it’s less fun than it sounds. (anything labeled “medical food” causes me to pause.) my doctor has me on it because i’m doing the ReStore diet and it’s supposed to help with an intense anti-inflammatory restoration detox by providing a lot of vitamins, minerals and protein. this morning was my first go at it.
the powder looks like bright mustard-yellow curry:
mixed with water, it looks like…mustard-colored curry mixed with water.
it tastes like s*^t.
in other news, i made a big mistake and ate out at the distillery on tuesday night. why i trusted their gluten-free menu is beyond me. i asked the waitress to check with the cooks about salad dressing: she returned to tell me everything i ordered was “okay” but the look on her face was full of uncertainty. my friends just looked at me and said: don’t eat the salad dressing. i didn’t. but what i did do is eat the grilled chicken, which was covered with (maybe not gluten-free?) spices and most likely cooked on a grill that had no been cleaned for contamination.
i’m on day 3 of killer stomach pain and i’m working from bed with my heating pad pressed against my stomach. depending on the level of contamination, it usually takes 3-4 days to feel okay, so i know it will end.
i wish my belly button was a reset button for my entire digestive track. that would really nice right now…
exactly what i said out loud in the cold foods aisle of Laurie’s Natural Foods yesterday when i discovered that my favorite toasted coconut flake marshmallows have a “may contain traces of wheat” allergy warning. so disappointing. i ate them last summer, 6 months before tests showed i had a gluten intolerance, and never noticed the warning. of course, back then none of my doctors suggested i avoid wheat, so i ate what i felt like eating.
sigh. i’m only disappointed because i was saving my first intake of sugar in 7 weeks (i can’t believe it will be that long!) for s’mores on my trip to Maine next week and now i’m not so sure i’ll be eating more than the gluten-free grahams and the gluten/dairy/soy-free chocolate. i haven’t bothered to check the warnings on regular bags of marshmallows because i’m slightly grossed out by gelatin.
i hate that word “may”–maybe yes or maybe no? sweet and sara’s faqs page says that only one kind of marshmallow (of course, the s’more flavor!) contains gluten; however, all of them are made on lines that process wheat-containing products. once again, i’m kinda stuck: risk a belly ache and not know if it’s from contamination or from sugar? decisions, decisions. might just eat my weight in the chocolate. or maybe my sister and i could try to whip up our own recipe…
The first time I realized that milk might be a serious digestive issue for me was the winter of 2008. I was at my in-laws drinking tea with a bit of milk, and I felt this horrible achey/rawness developing on one side of my throat. It wasn’t the first time that had happened, but it was the first time I realized that maybe this wasn’t the beginning of a cold. Maybe something else was happening.
Of course, I didn’t do anything about it. I kept drinking milk in my tea. I kept eating mug-fulls of cereal and skim milk at night if I was hungry at bedtime, even though I went to bed with a stomach ache right after. I was in the first year of my graduate program. We had just bought and started gutting an historic brick house and we were living in dust and chaos. I was exhausted from adjusting to my new life as a full-time graduate student, living in the middle of a house renovation and over committed to my neighborhood board, farmers market, and maintaining a constant social life. Giving up cheese and cereal felt like one more commitment I didn’t want to make.
Then, three really gross things happened in the span of 6 months.
1. Starbucks started selling tea lattes. And I started drinking them. A lot. There’s a Starbucks on campus, so between my back-to-back courses on Thursday evenings, I would run through the underground tunnels, making my way to the other side of campus and back, just in time for my second course. I hadn’t been feeling great, but I couldn’t seem to place it. I had about 6 colds in 7 months, my immune system was shot, and I couldn’t bounce back from anything. And every time I drank a tea latte, my stomach would begin to churn and protest for at least 3 hours. I had C pick me up early from class multiple times that semester before I realized that maybe I shouldn’t be drinking the tea lattes…at least not during class.
2. The tea lattes made me quit milk. It wasn’t gradual. It was an immediate cut-off. I wasn’t willing to keep getting sick in the bathrooms at school or leaving class early just because I wanted some tea and milk. Unfortunately, this began in May, so I knew I was headed into a summer without ice cream, which seemed like a horrid fate at the time. In early June, C and I took a trip to San Francisco for our 5 year anniversary and my 30th birthday. I stuck to my no-milk policy with the exception of one dinner where had the genius idea that after not consuming milk or milk products for 3 months, I should order a massive bowl of clam chowder and eat the entire thing. O, and also a full bottle of wine. Needless to say, C and I were unable to attend the concert we had tickets for that night because I spend the evening puking and sh*%ing my guts out from 10 p.m. till about 4 a.m. Happy anniversary babe: what other way could you possible want to spend your time than sitting in a hotel room, listening to your wife loose all of her insides?” We spent the next day wandering around SF, stopping every 30 minutes so I could lay on a bench or in the grass because I had nothing left in my body to keep me moving.
3. Despite the last story, I decided to one-up myself and make another genius decision later in the summer by consuming an entire bag of Cheetos at a party. I’m not talking about one of those tiny snack-size bags. I’m talking a full bag of Cheetos. On my own, all by myself, all within 30 minutes. Yup: my desire for crunchy fake-orange cheese was just that strong. Despite all my friends telling me I was nuts, I did it anyway. We all know the ending here. Only this time, it lasted about 3 days. My friend Greg tried to cheer me up by posting this picture on facebook and tagging me:
(random fun-fact: while googling images of cheetos, I found this. cheetos bath. double-awesome.)
After the cheetos incident, I finally learned my lesson. No more milk. No more milk products. Ever. Or until we find out what’s wrong with me, which took another 3 years.
I’m determined to make the most of my food intolerances, so I try to make reading labels an adventure. I love it when I discover something odd. Case and point: chips vs. stix.
From the front of the bags, these two crunchy snacks don’t seem that different, except for the shape of the chip:
Good Health Natural Foods makes both of them. They are the same color scheme. Their labels are almost identical with the exception of the background color. Other than the shape difference, anyone would assume they are the same chip, just made in a different shape. For the most part, they are. A friend brought the Veggie Stix as a snack for a meeting a few weeks ago, thinking I could eat them. But she bought the “wrong” bag.
The traces of wheat warning is only on the Stix bag, not the Chips bag. The warning is in a little box under the ingredients list, but other than the boarder, it doesn’t stand out on the back of the bag. Hence, it’s pretty easy to miss.
I have no expectation that anyone buying food for me to consume should obsessively read labels the way I do. Honestly, I felt bad she went out of her way to buy something she was excited to have for me, knowing all too often I can’t eat most of what’s served at social events. My mom did the same thing a few months back: she went out of her way to bake me a loaf of gluten-free bread, but didn’t see that whey was listed on the ingredient list.
As a person living with food intolerances, I’m extremely grateful and consider it thoughtful when someone attempts to cater to my specific needs. It’s not easy to do, especially for most of the people in my life who don’t have to think twice about what they eat. In both of these instances, I’m just glad I read the label before I started eating. It feels a little awkward to second-guess someone’s choice for you, but I’m so glad I did, because in both of these situations, I would have ended up sick and everyone would have ended up feeling bad.
Veggie Stix: welcome to my enemy list.
Veggie Chips: let’s hang out.
here’s a lesson i can’t seem to learn: always read labels on packaged food. always. always remember you’re never safe if you don’t. ever. you’ve learned that lesson. more than once.
i.e. a month ago, when i didn’t read the label on some bean dip and ate it all day, only to double-over with a massive stomach ache for a total of 8 hours. then i checked the label: whey. awesome bean dip: no wonder you were creamy.
i.e. 2 weeks ago when i ate these. two of them. thinking they were made from rice because they popped out of this ridiculous machine at wegmans and, well, they looked like very large flat things made of rice. #1 on ingredient list: whole wheat flour. #2: wheat flour. label Warning: contains gluten. i was in the middle of biting into my second one when my friend started reading the ingredient list out loud with a look of horror on her face. i tried to save myself by attempting to throw up the dry, tasteless discs of wheat, but all i got up was some spit.
i.e. tonight, when i split one of these tasty bars with my sister. in my excitement to try something new, i went straight for the crispy chocolate and took two heavenly bites. i then started writing a post for this blog about sugar and how i avoid it and how much of it i tend not to avoid it when i’m visiting my sugar-loving gluten, wheat, soy, and dairy-intolerant sister. while typing, i picked up the package and read the ingredient list.
ingredient list: milk chocolate coating (sugar, cocoa butter, skim milk powder, cocoa mass, anhydrous milk fat, whey powder, soy lechthin, natural flavor, vanilla), sugar, palm oil, etc etc, whey powder, etc etc.
Warning: Contains milk, soy, and tree nuts.
My sister’s response to this new knowledge: “Wow, so that’s why I’ve felt kinda gross after eating those last week…”
Dear Schar Gluten-Free Chocolate Hazelnut Bars,
Welcome to the enemy list. I really hope I don’t throw up your crispy chocolate goodness tonight. I hope you don’t hurt, no matter what end you come out tomorrow. I hate your processed-dessert pretty yellow packaging and all it’s contents. I don’t care that you’re Europe’s #1 gluten-free snack. We had a short-lived, 4 minute love affair before I realized you were full of evil and whey. It’s over.
It’s not you. It’s me.
I’m not good at being friends after, so goodbye is goodbye.
I gave up coffee 3 years ago. It was a brutal transition, but I’m happy to report that I survived it and filled the void with tea successfully. So successfully that I have only had 3 cups of coffee in the last 3 years.
Cup #1: July 2009 on a camping trip with a few of my closest gal friends. I gulped down espresso made over the campfire because I knew it would taste good and I was constipated.* If you are a coffee drinker, you probably know that coffee is an excellent diarrheic. It worked like a charm.
Cup #2: August 2010 on vacation with my family in Maine. I drank it because, once again, I was constipated from traveling. And once again, it worked.
Cup #3: last week, while at Javas, I decided I should try a latte with almond milk, just because I had never had one and it felt right. It was delish.
I gave up coffee because my acupuncturist insisted that I give it up. I was a solid year into horrible digestive issues and two semesters into my Ph.D. and I couldn’t eat a thing without sh*^ing it out within hours. So, I went on an extremely limited diet under the guidance of my acupuncturist and medical doctor. Coffee was at the top of the list because coffee made me sick. Really sick. Immediately sick. Leave class because I think I’m gonna die sick. I know now that drinking coffee was just exacerbating my digestive issues, but because we didn’t know what those digestive issues were, it was simply a guessing game: eliminate anything hard to digest and see what happens. (The elimination included coffee, beans, alcohol, anything raw and a host of other things I’ll fill you in on later.)
I’m a former barista. I supported myself through my master’s degree by working at Starbucks, where I fell in love with working the espresso bar (I still miss is) and realized that there were fewer holiday drinks lovelier than a peppermint mocha. When I started teaching, I picked up a part-time summer job at a local coffee shop so I could hang with my friends who also worked there part time. When I started my PhD, I realized that coffee had become not only one of my main “energy sources” but also a large part of my social life. I was close friends with people who own cafes in the city. A regular part of my day was seeing them, sitting in their cafes, chatting with the baristas, and drinking a lot of coffee. This is still true.
I went off coffee the way you’d wean yourself from a medication: slowly, deliberately, and with lots of headaches and cravings. It took 3 weeks for me to stop drinking it. It took a year for me to stop craving it. Now, I hardly think about it. I’ve become completely obsessed with tea. I’ve become as snobby about good tea as I was about good coffee. Only with tea, I never get a stomachache, I rarely get hyper or shaky, and unless it’s green tea, I don’t notice any negative (or positive) effect on digestive track.
When I tell people I don’t drink coffee, I usually get a “how are you surviving life” comment. Like anything you eliminate from your life, the less you have it, the less you realize it was ever there in the first place. Now I only crave coffee on random occasions, and I rarely give in to those cravings simply because I like tea so much more now.
I’m going to do an iced-tea round-up later today or tomorrow, highlighting my favorite places for iced tea in Rochester and how I make it at home. If you love iced tea as much as I do, check back.
*Don’t be fooled: if you have celiac or other digestive issues, constipation is a huge indication there’s a problem. It can be just as bad as having the opposite problem.
I started this blog a bit late in my digestive journey. I’m already four years in and although I have written about my difficulty with food on my other blog, posts are few and far between. (To read posts only related to celiacs and health on madebyrachel, just use the health category.) So, I’m not exactly sure how to start other than to jump right in and give you a little how-to guide so we’re all on the same page. Here goes.
*I have a lot of stories. I plan on writing them as they come to me. I’ll probably skip around a bit, filling in the spaces as I go in a semi-coherent but not necessarily linear fashion. If you get lost and need back story, scope out the posts with the digestive journey tag.
*Just a warning: I’m an academic writing teacher. I get paid to write and to teach writing. I love bullets and have no intention of obsessively checking this blog for mechanical and grammatical errors because I’d rather be biking or reading or sewing than editing. I apologize in advance for misplaced commas.
*Celiac disease is a genetic, autoimmune disease. You can read the quick over-view of it here and here. What some people don’t understand about celiac is that it’s different for every individual. While symptoms can be similar across people and populations, how people experience celiac in their bodies can be highly individual, which is one of the many reasons it is difficult to diagnose. Getting a diagnosis took me almost 4 years. It hurts my heart to know there are millions out there going through the same things I did and still don’t know how much happier and healthier they would be if they dropped the gluten. Unfortunately, my doctors never encouraged me to, even after multiple tests. This is one of the main reasons I started this blog.
*Dairy-free: When I say dairy-free, I usually mean cow-products. Personally, I can’t eat anything that comes from a cow; oddly enough, I can eat the actual cow. I find this fascinating. I can eat goat and sheep products; however, I rarely do. More on that in the future. I do eat eggs, (that’s lunch pictured above) mainly because I love them. I only buy eggs from farmers I trust, which has made me an egg snob in terms of taste. I’m not a big meat eater and other than nuts, it’s difficult for me to get the protein I need. This is a side effect of celiac disease: you’re gut doesn’t always absorb nutrients. More on that in the future as well.
*Soy-free: For 3 and a half years, I could not touch soy. This included any food that had soy or a soy-related ingredient listed on its package. After going gluten-free, my body seems to be more willing to digest soy in small amounts. I still avoid it because soy isn’t that great for you anyway and is the most genetically modified crop in the country. I also don’t eat food that has ingredients I don’t immediately recognize. I’m an obsessive ingredient list reader. Most of my contamination illnesses have come from not paying attention to ingredient lists.
*Meat: I was a vegetarian for many years. I still don’t eat a lot of meat, despite doctors’ orders to do so. I gave in to chicken and fish when everything I ate went in and out within a few hours and I started loosing weight. I do my very best to only eat meat that comes from farms I trust and farmers I have met.
*Enemy list: The enemy list is a list of foods that have literally wrecked my shop. Meaning, I ate them and was laid out with an excruciating stomachache and intestinal pain, threw up multiple times, and the toilet and I got super close for 3-4 days. Everyone’s enemy list looks different. Mine is long. I secretly enjoy adding to it. It eases the frustration.
*Does living with celiac disease suck: yes. Does it get easier? Absolutely. The first few months are the hardest, especially when you don’t know where gluten has snuck in and you aren’t sure what to avoid. Sticking to a gluten-free diet for life means giving up a lot of foods. What has been the most interesting part of my journey is discovering just how emotionally connected we are to specific foods. Moving through those emotions are key to living a healthy, gluten-free life, but it doesn’t come without frustration and some anger. I have sat in restaurants, eating a salad with no dressing, feeling angry to the point of tears while all my friends enjoyed a full menu with no restrictions. Living gluten-free takes courage: the kind of courage to ask for special accommodations from chefs. (That part gets easier, too.) Above all, being honest with those closest to you about what you need in order to eat and drink along with them is important. Lucky for me, I have an amazing husband, family and friends who care that I don’t sit there with raw carrots every time we gather. Educate your people and they will be good to you.
*Not all posts will be this long. I promise.
**I’m off to eat the rest of my hard boiled eggs and slam a large iced tea before a bike ride. Recipes later today!