I’d really love to start this post with I did a 21 day sugar detox and I killed it but instead I’m going to say that trying to do a detox when your diet is already incredibly limited was a lesson in what not to do when your diet is already incredibly limited.
For starters, my diet is currently already limited to the following list:
*veggies (minus hard to digest veggies like cabbage. and brussels sprouts.)
*occasionally: grains like rice and quinoa
*coffee, tea, some liquors (I hate sweet drinks, so I drink all beverages with no sweeteners, even mixed drinks.)
The detox I attempted to do limited my diet to:
*veggies (but no potatoes, sweet potatoes, beets or other naturally sweet and starchy veggies)
*grapefruit, granny smith apples, not yet ripe bananas, lemons and limes
*meat, fish (but not cured meat)
Avoiding refined sugar is not hard for me. Unless I can find a dairy and soy free chocolate bar, there’s almost nothing sweet I can buy that is free of gluten, diary, soy and eggs. I also am not a baker, so making sweets is rare. Trying to cut back on my sweet tooth meant eating less fruit, not eating sweet potatoes, and not drinking wine. Ok, no problem.
Here’s what 21 days eating this way (above) translated to: not eating until 2 p.m. (or sometimes 4 p.m.) because I didn’t take time to figure out what I could eat on the detox, so instead, I just drank coffee and didn’t eat until the evening when I’d make a massive meal and go to bed with a headache from not eating all day. Really. Dumb.
Here’s the good and bad of what I learned over the last 21 days:
1. Bad: I already have to plan ahead for every single meal I eat. Trying to limit my diet even more especially when I’m busy translates to: It’s too much work. I’ll eat half an avocado and a latte and call it breakfast/lunch. This move over a number of days translates to massive headaches. That last for days. It basically moved me from eating Larabars and lattes all day to not eating and drinking coffee all day. Not healthy. Ridiculous.
2. Good: I don’t need to learn to eliminate sugar. I hardly eat it anyway. I used to have a major sweet tooth but I don’t as much any more, so why exactly am I trying to do this…? The detox was about limiting cravings. I already have a biologically built-in inability to digest so much that limits and cravings mean very different things to me now. Learning this about myself was really awesome.
3. Bad: Sure, giving up alcohol if a few weeks is probably healthy. When I crave something sweet, I crave a glass of wine, a bowl of coconut ice-cream, or a rice cake smothered in peanut butter and my mom’s homemade raspberry jam. (She makes a special one with less sugar for me now because she rules.) The only thing I craved on this detox was sweet potatoes and wine. These things are not inherently bad for me. I’m not sure avoiding them did me that much good.
4. Good: Avocados in smoothies are always a good idea. New favorite: 1/2 avocado, 1 banana, coconut/almond milk, 1 big spoonful of peanut or almond butter. Tasty good fats. Also, bacon and parsnips are a perfect combo. Who knew?
5. Bad: It’s day 22 and I ate 2 Larabars and an almond milk latte and called it breakfast/lunch. Clearly, I did not kick my Larabar habit. I’m not clear if this is a bad thing or just my reality right now.
6. Good: It was awesome to do this diet with my sister, brother-in-law, and friends. I created a private Facebook group for people doing the detox with us and it was so great to share all our recipes and cheer each other on when we wanted to face-plant into a pile of Oreos. (Or, if you’re me, into a glass of wine and a baked sweet potato.) My one thought is that if you are ever going to attempt to change anything in your diet, get a buddy. It’s easier with a buddy. I know this after 5 years of having to eat drastically different from everyone else. Having two siblings who eat like me makes me feel “normal” when it comes to eating.
7. Super Duper Bad: After 10 months, I decided to try eggs last week. It was a disaster. It deserves its own blog post. I’m currently reading up on the science of egg allergy testing to I can write an informed post on egg allergies. Needless to say, the science is not conclusive.
I think the good out-weighs the bad on the last 21 days. It made me realize that it’s okay to go gentle and remove things from my diet, but only if they really make sense for my well-being. Is a sweet potato and a glass of wine here and there really going to wreck me? No. But I think that given how little sugar (refined and natural) I actually consume, limiting myself more than I already have isn’t really all that worth it, especially if it only causes me more stress. (What the hell am I gonna eat? Answer: Nothing.) I think I’m going to stick to my sweet potatoes. And Pink Lady apples. And ripe bananas. I really really missed ripe bananas.
I committed to this detox to see what it would do for my skin and stomach aches. My skin is no better, but I know enough to realize 21 days is not going to change my skin. Eggs wrecked my stomach. I don’t consider the last 21 days a failure, though. I think of it more as a kick-starter to eating with a “restore” state of mind: gentle foods that heal and give your body some rest. I’m game to keep going with this. Only with ripe bananas.
In 2010, I had two upper endoscopies and one colonoscopy. Since the colonoscopy procedure is a bit more complex and requires a nasty clean-out-your-system cleanse, I’m saving it for its very own long, detailed, and utterly disgusting post. (I know you can’t wait.)
The medical term for an upper endoscopy is esophagogastroduodenoscopy.
Let’s break that massive word down:
*esophago = esophagus
*gastro = stomach
*duoden = duodenum (the first part of the small intestine)
*scopy = to see (suffix meaning “observation or a visual examination”)
An upper endoscopy is a procedure that enables a gastroenterologist (GI) doctor to visually examine the upper digestive system with a tiny camera on the end of a long, flexible tube. Sounds pretty straight forward. Kinda is.
Months after my kidney stone surgery, I was still having chronic pain of multiple kinds. There was the usual cramping and sharp pains in my intestinal track, the stomach aches that were pretty constant, regardless of what I ate, and a hot burning twisting throb at the bottom of my rib cage. I was having a hard time getting much done. I dropped the one course I was supposed to take and registered for independent study credits just to keep myself enrolled in my Ph.D. program and working towards something. I spent a lot of hours on the couch with a heating pad pressed against my gut.
What was most upsetting was that I really wanted to believe that the pain I had been in before the holidays was all related to kidney stones, despite the fact that my urologist told me it was very unlikely. I still wanted to believe it. I wanted to think that once the stones were gone and the ureteral stent got yanked out, I’d be all good to go.
My doctor put me on medication to deal with the constant pain. I started on hyoscyamine, prescribed for treating stomach and intestinal problems like cramping and irritable bowel syndrome. It’s like a muscle relaxant for your digestive track: it works by decreasing acid production in the stomach and slowing down or relaxing the stomach. When that didn’t help, we tried dicyclomine, also used to treat irritable bowel syndrome and relieve muscle spasms in the gastrointestinal track.
While both of these medications made me a lot more relaxed (to do the hard work of laying on the couch with a heating pad all day), they didn’t touch much of the chronic pain I was having. This is when I started to realize that my doctor really didn’t know what was going on with me. She kept telling me I had irritable bowel syndrome and that the stress of graduate school and living in a house under constant construction was giving me gastrointestinal issues and once I could find ways to relieve the psychological stress, my body would follow suit. Being the dutiful researcher that I am, I started reading as much as I could on irritable bowel syndrome, which is basically the blanket term for digestive-issues-we-don’t-understand.
I finally went to see a GI specialist. I spent a full hour with this specialist, going over every inch of my health history, my family’s history of Crohns disease, what I was and wasn’t eating. Then she told me I had irritable bowel syndrome. I asked her what that meant.
Her exact words: “Honey, when we tell you that you have irritable bowel syndrome, it just means we have no idea what you have. It doesn’t really mean much of anything.”
Here’s a heads-up on that one: In my experience, if you’ve been diagnosed with irritable bowel syndrome, it just means you have bowels that are irritable. Moody bowels. They don’t like stress. They don’t like certain foods (but you aren’t always sure what ones). Technically, IBS is about your large intestine (colon) getting all pissy about the food you’re eating, the booze you’re drinking, and the stress you’re under. But a diagnosis of IBS doesn’t really tell you much more than that. This is what frustrates me about modern medicine: my doctor wanted to put me on medications to try to relax the pain away without determining where the pain was coming from in the first place. If our bodies are tightly connected systems, shouldn’t there be more to find out here? Being told by my doctor that IBS is a “very typical issue for most graduate students” is one thing, but having IBS and intense pain chronically for months at a time to the point of being unable to operate normally seems like something else. Or at least, something more. Sure, IBS is real and it sucks. But being told you have IBS and then being told IBS means we don’t really know what’s going on is not very comforting.
My GI doctor decided I needed both an upper endoscopy and a colonoscopy to see if anything was going on in my insides, but I couldn’t get in for the procedure until July. It was May. I was tired and loosing weight. My GI insisted I start drinking protein drinks. She told me to stay off dairy and anything else that bothered me. (Which was pretty much every thing.)
The first week of June, I had a major bike accident. I broke both of my elbows, broke off two of my front teeth, and suffered a major concussion that had me blacking out once every 24 hours: I would wake up on the floor, C half holding me with a look of panic on his face. I’m skipping the bike accident details for now. I just wanted to include them because I had to go to my upper endoscopy and colonoscopy with broken elbows and lay on the bed in my slings, which I’m sure looked ridiculous.
There’s the skinny on upper endoscopies:
*There’s no real cleanse. You just stop eating and drinking at midnight. In the morning, I wake up thirsty and apprehensive.
*At the office, I sat in the waiting room with a bunch of tired looking people who are either waiting to also have tubes pushed down their throats or have just suffered the world’s worst colonoscopy cleanse and look like they would rather lick a toilet than go through it again. (That might be extreme, but seriously: it’s hard.) Some of these people are in their 50s and 60s are probably getting routine check-ins. Some of them are probably there for scary things like colon cancer. This makes me anxious.
*When the nurse calls me back, I stand in a freezing cold room while she takes my vitals, trying not to cringe when she touches my broken arms (which are not casted). I have C help me change into a super flimsy gown and sit in the freezing cold while she cheerfully asks me what feels like a million questions about what I did and did not eat or drink in the last 24 hours. She puts an IV in. She lets me put my sling back on my left arm, which is more broken than my right, where the IV is.
*I’m led into a hallway full of curtains. Behind these curtains are hospital beds, some empty, some with sleeping people who have just come out of procedures. I lay on one of the beds, holding my half slung arms against me, and wait, listening to people burping and passing gas and nurses softly saying “yup, that’s okay, it’s all air that has to come out, just relax.” Here’s what they don’t tell you about these procedures: When you’re done, you literally lay on a bed in a room full of other people laying on beds, half unconscious and so relaxed that air is coming out of their bodies and you realize that you are also one of those people, doing that. Procedures like endoscopies often require doctors to put gentle air pressure into you esophagus to inflate your digestive tract so the endoscope can move freely and the folds of your digestive tract are more easily examined. This explains the room full of people and all the air moving around.
*The room where the procedures take place is full of machines and screens and equipment. There’s lots of beeping and air compression noises. The nurse tells me that I will be awake for the procedure, but I won’t know I’m awake because of the sedative. I will talk to them, but I won’t remember most of it. An assistant asks me to open my mouth so she can spray anesthetic to numb my throat in preparation for inserting the long flexible tube. She also puts a plastic mouth guard in my mouth to hold it open. I don’t remember being asked to swallow the scope as it went down my throat. I don’t even remember it being inserted. There was nothing painful about it.
*When I came to, I was not in the room full of farting burping people. I was laying on my side and there was a large black tube in front of my nose. At the end of the tube was my other GI doctor, and he was moving the tube around. I panicked. I started to cry. There’s a figging massive black tube down my throat and I’m not supposed to be awake for this part. I felt myself let out the world’s largest belch. It felt like it echoed through the black tube. I could hear lots of talking. Someone rubbed my arm and said “It’s okay sweetie, just let that air out, that’s supposed to happen…”
*When I woke up again, I was in the room full of farting burping people. My throat felt a little sore. I felt like I was on a million muscle relaxants.
*C came in with a nurse. When you are put half-under for upper endoscopies, you are required to have someone with you. They don’t have to stay, but you can’t drive yourself home because of the effects of the drugs post procedure, so someone has to be there when it’s all over to take you home. I don’t remember much else from that day except that the drugs must have really hit me hard: when I got home, I went straight to bed and slept for 3 hours.
*Not everyone is put under a sedative for the procedure. Some of my family members told me they were fully awake when they had their endoscopies. A friend of mine just had one done and she went straight from the doctors to eat a big lunch at a cafe and then went home and took a nap. I’m not sure why they sedated me so much, but it’s also possible that given how sensitive I am to drugs, my body just passed right out from it.
*Results: They found damage, but not the sort they fully expected. At the base of my esophagus, there was deterioration from acid reflux. This explained some of the burning pain I was experiencing at the base of my rib cage. They told me it was so low in my esophagus that I probably didn’t realize that some of the pain I’d been having was related to acid reflux. That’s all they found.
*I was told I could change my diet to help with the burning sensation from the reflux, or I could just take medications and eat whatever I wanted. I was sent home from my endoscopy with a prescription for the cleanse powder I’m convinced is manufactured in hell.
*I had a sight sore throat for a day. The stomach pain continued.
*Part 2: Colonoscopy and surviving the worse cleanse of my life thus far.
Over the last few months, I’ve been receiving emails and comments on past posts about what sort of testing I went through in 2010 and if the chronic pain I had that year was related to having kidney stones. I’ve been putting off that story because it was an extremely busy semester and now that it’s over, I’m in the thick of writing of my dissertation proposal. Not surprisingly, my dissertation topic is related to science, health and how we learn about the seen and unseen (invisible) things that go on inside of our bodies. (Dissertation nutshell: How do urban girls learn about bisphenol A (BPA) in their bodies while making a science documentary on that topic? Even just typing that makes me giddy about my research.)
An important part of my dissertation proposal has been writing about myself as a researcher. In the academic world, we call this a researcher positionally statement. I’ve been drafting and redrafting mine for a solid 8 months. I sort of know what I want to say, but conceptualizing how I understand my own health journey and experiences with my body while in graduate school (researching how girls come to understand their own bodies and the role that scientific knowledge plays in their understandings of themselves and their environment) has really shaped how I approach my work as a researcher: it’s important to me to really grapple with my own journey, because it has shaped my understanding(s) of how other people come to accept or reject “scientific” explanations of what actually happens inside of our bodies.
When I look back at the last 5 years, I realize just how much my physical, mental and emotional health impacted my experiences in graduate school. I write about it because it helps me understand myself and my research. It feels like a new step to be conceptualizing that journey now in a dissertation proposal for a new audience (an academic one), but one that has watched me struggle through the last 5 years to get healthy and stay healthy enough to complete my Ph.D. Learning to take care of myself has been one of the hardest lessons I have ever been forced to learn. I’ve come to understand it as a continuous process of unfolding: every day/week, I look back and see moments where I chose to put my health and well-being first, even when it made me feel horrible that I didn’t meet a deadline, missed a meeting, didn’t get enough done. Slowing down takes practice. Feeding yourself takes practice. I’m still in the process of figuring out what it means to really feed myself every day–literally: feed myself food that keeps me going and doesn’t make me sick 24 hours later. When I fail to feed myself literally, it impacts every other aspect of my life. This is why I’m so motivated to stay with my limited diet: I want to graduate in May 2014. I’m determined to stay as healthy as I can, recognizing that some times that’s beyond my control, but often, it’s a matter of choosing what works for my body, recognizing that everything I put in impacts multiple aspects of my life.
The academic writing teacher in me (I taught academic writing in higher education for 7 years) has been thinking about how interesting it might be to continue writing about my digestive journey (of 2010/hell year) here on my blog as a way to help me understand how that journey has impacted my dissertation research. Writing for different audiences can really push someone to articulate experiences in new ways. I’m curious about how writing about my digestive journey here might help me write the researcher positionally statement of my dissertation proposal this summer, keeping in mind that some of my academic life bleeds into my online life and reads this blog.
I left off my 2010 story right before my bike accident, where I was literally unable to feed myself and forced to have my saintly husband and mother take me to the bathroom because I broke both my elbows. O, and getting my first endoscopy and colonoscopy while in casts. Avoid the next few digestive journey posts if you aren’t okay with reading about what it feels like to clean out your entire body for a colonoscopy: it’s fascinatingly sick.
*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.
*in exactly 7 days i will get the full test results of all 9 vials of my blood work.
*the old me would have decided that i have exactly 7 days to eat every possible thing that i got tested for so that i can eat it just one more time before i’m told i can never have it again. i did this with gluten years ago: in the 3 weeks leading up to getting my test results i ate a lot of bread. i remember sitting with one of my bffs an hour before i was supposed to get my results in and saying “this might be my last real amazing sandwich for the rest of my life.” an hour later, no more gluten.
*the new me has decided that it’s not worth the pain. i tried to add in corn two weeks ago and it went very very badly. i paid for that mistake for 5 days. after recovering from that, i tried nuts because i thought i missed them. turns out i don’t miss them enough to be that bloated. (i also didn’t eat soaked nuts, which might have helped.) last weekend i went for some eggs. i had a stomach ache for hours.
*now, i realize that after 9 weeks, adding foods back in isn’t necessarily going to be easy. i was a bit surprised by the stomach aches with eggs and nuts. not so much with corn. i’m still hoping that my blood work will come back saying there’s nothing else going on and my reactions to corn, nuts, and eggs are just a natural part of adding foods back in to my diet that i haven’t eaten in 2 months.
*i hope corn is not an issue, although the only real corn i eat is the occasional tortilla chips. i love corn on the cob but in NY state the season is pretty short for fresh corn, so i won’t complain about it. nuts are another story. i like almond milk, although this elimination diet has made me LOVE coconut milk. i’d be sad to give up nuts for life. giving up eggs would just suck, especially because they are a huge source of protein for me and i like to avoid too much meat. god forbid i have to go corn, nuts and egg free. good. lord. that would be crazy.
*i am extremely happy to say that the last 9 weeks have been the best 9 weeks of my digestive life: i’ve never had more energy and felt better. so, i must be doing something right.
*one new food i found that i love: go raw super cookies. despite being called cookies, they are not sweet. a handful of these are an awesome snack.
*i just bought the lemon ones. so good.
this morning i went to get the blood work done that my functional wellness doctor had ordered for me two weeks ago. while i was sitting in the waiting room, one of the medical techs went into the front office and had a very long and loud conversion about my paperwork: my doctor had ordered so much blood testing that the techs were concerned they were going to mess it up trying to keep all the vials straight.
there were 3 other people in the waiting room, so i pretended the loud conversation they were having was not about me.
unlike most of the labs i’ve been to, this lab does not close doors. while sitting in the waiting room, i heard the entire conversation between the two techs and the patient before me. (hey there hipaa laws.) granted, they weren’t talking in much detail, but i still found it a bit odd.
when the tech called me back (the same one having the loud conversation about my medical forms), she was friendly and chatty and asked me to sit down while they triple checked my paper work. she told me that because of all the tests my doctor had ordered, they were concerned the chances for any sort of error on their part would require me to come back and do the process all over again. i appreciated this triple check, which involved three techs, including the receptionist (who is also a med tech), going through every inch of my form and laying out the vials in perfect order. they had to go to a storage room to get additional vials because of what i was being tested for. the entire process had three steps: one tech drew my blood, one tech tipped the vials (not exactly sure what this is about but i’m sure my nurse friends can fill me in), and one tech labeled every vial as it was handed to her. in order. one of the vials had to be wrapped in tin foil because the blood could not be exposed to light. not sure what that was testing for.
9 vials of blood later, and i was finished.
then we had a funny conversation about how many vials they just filled and how i wanted to take a picture of them for my blog, which none of them had ever experienced before. no surprise there: who actually takes pictures of their blood before it’s shipped to the lab? this girl.
soon, i’ll find out if i have any additional food intolerances/allergies (such as nuts, eggs, legumes, etc), if my thyroid is normal, and how many vitamin deficiencies i have. (my guess is that vitamin B will show up again as seriously lacking.)
who knew having blood drawn could be so entertaining?
It’s back: the restore diet. Aka: the comprehensive elimination diet. Aka: eat nothing but veggies, fruits, rice, chicken, turkey, fish, coconut milk, olive oil, and tea diet.
Turns out my last bout of gluten contamination over 3 weeks ago wasn’t contamination. It lasted for about 2 and a half weeks and was some of the most intense pain I’ve experienced in my life. I actually mistook the pain for a kidney stone last Sunday when I was laying in bed, realizing I couldn’t stand up straight and everything felt like it did the month leading up to my last kidney stone surgery. Thankfully, the intense pain subsided after 48 hours, but I spent the better part of a solid week laying in bed with a heating pad on my abdomen and sleeping 14 hours a night, plus naps. I’m amazed I slept that much. If you see me and I look tired, it’s because I am.
So, I met with my functional wellness doctor last Tuesday and I have a host of blood work ahead of me to test for additional food sensitivities and intolerances. The good news is I’m in less pain now and I didn’t have to have surgery again. Yippee! I do have to go back on the restore diet I was on 2 years ago (read all about that here) for 6-9 weeks (minimum) and start drinking powders labeled “medical food” and completely avoid my favorite things (like coffee, booze, almond milk, eggs, and honey). But I’m on day 3 and feeling positive. Although my first time back at the gym this morning was brutal. (Haven’t been in 3 weeks.)
Other awesome restore diet things:
*I get to drink smoothies with unsweetened coconut milk, which is always yummy. I’m using this supplement to boost my protein, since I can’t have my main protein sources (nuts, eggs) and have to start eating chicken, fish, and turkey again. I’d highly recommend it. It’s vegan and it’s yummy.
*Turns out coconut milk on rice crispy cereal and in tea lattes is quite tasty. Matcha in banana coconut smoothies is also awesome.
*My amazing sister and her husband are being ultra supportive and doing the restore diet with me for at least 6 weeks. We all plan on loosing our love-handles in the process and constantly text each other pictures of the recipes we make up to get through the massive amount of veggies we eat all day. This level of support is amazing.
*My mother called to tell me she went grocery shopping and is currently cooking me a bunch of things off the restore diet list and driving it all out to me tomorrow. Seriously: I have an amazing family.
*Again, I can’t express enough how happy I am that I’m not: in the hospital and/or getting another endoscopy and/or colonoscopy. I’ll take the restore diet over any of those things.
*I also have a possible new diagnosis: leaky gut. I’ve had numerous doctors and natural health practitioners suggest this to me in the last year but I haven’t done much research on the science behind it. My doctor explained it to me on Tuesday and I’m still in the process of learning what it actually means for my body. (You can read a general synopsis here and here.) It would make sense, given my chronic digestive issues, food sensitivities/intolerances, and the chronic pain I’ve been having, which my doctors think is caused by inflammation in my digestive track. So, I’m feeling hopeful that doing the restore diet for a while will help me reset things and begin to build me back up in time to enjoy the summer months.
*I leave for a week in San Francisco in 14 days and I’m slightly worried that traveling on the restore diet is going to be frustrating for the first 5 days when I’m in a hotel and don’t have access to a kitchen. I need to find a place that will make me smoothies with coconut milk in the Union Square area. Suggestions for any places that make smoothies and a mean salad would be awesome!
a lot of people have asked me what it feels like when i get gluten-ated (contaminated with gluten). here it is in a nut shell: 2-3 days of extremely painful stomach aches, followed by a minimum of 1-2 days with extremely sharp stabbing intestinal pain. so, when people ask me if i ever “cheat” and eat gluten, i always look at them like they are 1. slightly crazy or 2. misinformed. given how trendy it is to be “gluten-free,” i’ve been confronted multiple times in the last few months with skeptical comments about why i am gluten-free from people who haven’t known me more than a year or two. C’s response when this happens is to look at them and say “you have no idea what it was like before the diagnosis. no idea.” (thank you C for sticking with me all these years.)
today is tuesday and i’m trying to determine what i ate in the last 5 days that trigged 4 days of brutal stomach aches and 1 very long day of intense intestinal pain. after 5 years of this, i know it’s gluten because everything else that i struggle with (diary, soy, beans, etc) usually just ends with a stomach ache and throwing up (to put it bluntly), not days and days laying in bed with a heating pad pressed into my torso, waiting for it to end.
the second question i get a lot is: how do i deal with it when it happens?
1. spend 2 days going over everything that’s gone into my body, trying to isolate the source
2. lay in bed with a heat pad on high
3. drink lots of detox tea
4. eat very little (eating some times makes it worse for me.)
5. up my probiotic intake and chinese herbals
6. get acupuncture
7. repeat 2-3 over and over and over and over
i’ve been meaning to write some posts on acupuncture and chinese herbals for a while now because i was never a believer until i started using both in my life every week. i’m astonished how much i depend on them now. my intestinal pain was so intense yesterday, i was having a hard time functioning. i had acupuncture at 8 last night and this morning: no more pain. the skeptics would just argue that it finally ran it’s course, but i’m not so sure…
one of the things that’s an absolute when i’m gluten-ated is eating right. i pretty much have to go into lock-down mode to keep things from getting worse, which is hard because i often feel both hungry and sick at the same time. sticking to warm, soft, easy to digest food is a must. avoiding coffee and alcohol for a few days after it’s over is also a must. nothing that causes inflammation.
this time around i stuck with a kale, fennel, quinoa dish and pumpkin muffins like these ones, made with honey, almond milk and almond flour (minus the walnuts). they are soft and taste like pumpkin pie but aren’t too sweet. (kale, fennel and honey are great aids for digestive tracks, as well as anti-inflammatory. pumpkin is easy to digest.) the trick is to eat warm, digestible foods without eating things that cause bloating (beans and too many veggies all at once) but also get enough protein to keep yourself going (hence, the quinoa).
i’m happy to say that i’m on day 6 and on the mend.
i’ll admit that every time this happens, i cease wanting to ever eat out again or even eat at people’s houses out of fear. that part is hard. but i know it could be much worse. many people with gluten allergies have to be hospitalized when they are gluten-ated. i’m one of the lucky ones who can push through it with a few bad days and a lot of detox tea.
also, it helps to talk to someone with the same issues. my younger sister has the same digestive drama i do, so when i’m suffering and annoyed and grumpy about it, i call her and she reminds me that it won’t last forever.
i’m curious what everyone else does when they are gluten-ated. feel free to share your own ideas!
One of my commitments on this blog is to write about my digestive journey, specifically 2010, officially known as my year in digestive hell. I started writing about 2010 a while back: you can read the first two entries of the story here and here so you’re all caught up on my first holiday of laying on the couch in chronic pain and what it’s like to have kidney stone surgery. It’s important to me that anyone reading this blog understands that my rationale for sharing these stories has everything to do with the constant emails I receive from people here and on facebook inquiring into the specifics of my own digestive journey, as they themselves are going through digestive hell. In part, sharing on this blog keeps me from having to constantly write individual emails. But I also feel that as an educator (in my professional life), it’s my “job” to educate people about their bodies, having lived through a lot of tests and dead ends and wrong turns. I realize some people will never struggle with what to eat, but my general experience is that given our American diet, most of the people I know have some sort of “problem” with some kind of food at some point in their lives. So, whether you’re reading for fun or to learn, I’m glad you’re here. I hope you can accept that parts of these stories are kinda sad, parts are funny, and more often than not, down-right disgusting. I’m going to do you all a favor and not shy away from any of those parts, because living with chronic digestive drama is hard, often confusing, and some times scary.
So, back to 2010. When we left off, I had just had kidney stone surgery and was hanging around the house for 2 weeks with a ureteral stent (it’s as upsetting as it sounds) wedged into me and the only evidence I had that it was truly there was the long black thread hanging down between my thighs and the images that came up every time I googled “ureteral stent.” I’m gonna go ahead and say that there are few things that make me more queasy than knowing there’s a foreign object in my body, literally holding me open so my ureter doesn’t swell shut and trap all those lovely little kidney stones from floating down and out when I peed. If you’ve had kidney stone surgery, you’ve been lucky enough to have to take little pills that make you pee the color of blood oranges (oddly one of my favorite fruits) and know that regardless of what the nurses tell you, you will still be totally surprised by how painful it is to pee after surgery and how shocking it is to look down and see the brightest blood orange stream coming out of your body, full of tiny blood clots and microscopic pieces of what was once kidney stones that were blasted to bits, now coming to rest on top the little strainer you have to pee through in order to send these bits off to lab for analysis. The best part is that you get to do this for days. And days. And days.
Because it was early in 2010 (mid January) and I had yet to learn that being a full-time Ph.D student, living in a half gutted house, volunteering at neighborhood organizations, running a creative business, being a partner to C (who runs his own business and was doing all the house renovating) and having a very full social life might be too much to handle, I did what I always did: I went to a holiday party the day after my surgery and drank wine. It didn’t occur to me not to go, despite the 5 inch long thread I saw every time I peed blood orange or the powerful pain meds I was on, or that I was pale and grossly thin and all together not meant to be in public. It took me a year to finally realize that after a hospital visit, it’s best to just stay home, but I was early on in my year of health hell and clearly ridiculous. I managed to get home from the party intact, but spent the next few weeks laying around the house, feeling awful. I was CONVINCED that having kidney stones was obviously the root of all of my digestive pain and now that the stones had been removed, life would resume and I would no longer be clutching my stomach and drinking ginger tea all day.
Turns out I was just one of those people who gets kidney stones regardless of my digestive drama. After two weeks of stone collection, I went in to have my ureteral stent pulled out because I refused to pull it out myself. The nurse insisted on the phone that anyone can pull out their own ureteral stent. I remember saying to her, “I can’t pull this thing out of my body. I’ll pass out when it’s half out of me.” She suggested I have C do it. I told her C was less likely to pull it out of me than I was and we both might pass out if he was involved. So, she finally gave me an appointment to have a post-surgery follow-up chat with my urologist and have a nurse yank a 12 inch piece of plastic coated wire out of my crotch.
Just a heads-up on this process: Getting a ureteral stent pulled out looks similar to having a obgyn appointment. You lay on a table, legs spread, feet in stirrups, unable to see anything below the gown your wearing, hoping that nothing bad is about to happen while a nurse puts on gloves and tells you it will all be over in less than 3 seconds. You want very much to trust her and believe that she is a trained professional and is therefore more qualified to pull a long piece of metal out of your body than you are. However, when the nurse says she’s going to count out loud and pull at 3, she really means she’ll count to 2 and suddenly yank the black string from between your legs with one fast swoop and you’ll feel as though something oddly just went rushing through the lower half of your body, but you won’t have time to panic about it because you’ll be sitting there, legs wide open, staring at the 12 inch stent she’s holding up in front of you while saying, “See? That wasn’t so bad. This is what was inside of you for 2 weeks” in a voice that makes you feel completely ridiculous for asking her to pull the stent out when you could have saved yourself the trip and done it all along.
A few minutes later, when I met with my urologist, he told me 3 things:
1. We analyzed your kidney stones and they are probably forming for various dietary and genetic reasons.
2. There’s more in there, so don’t be surprised that if you decide to stop eating and drinking for awhile, or eat a lot of leafy greens, or drink tea and coffee, and eat red meat, or basically just live life normally, you’ll probably pass more. And they will probably hurt.
3. It’s extremely unlikely that your digestive pain/stomach aches had anything to do with your kidney stones. (In fact, in all his 40+ years of experience working as a urologist and being at the top of his field at a research university, he has never once heard of a link between stomach pain and the onset of kidney stones.)
My response was: Welllll maybe I’m a weird case.
He said, “Not likely.”
He sent me home with a list of things to avoid and said he hoped he never saw me again. It was the one time I actually appreciated being told that.
The problem was, I was still feeling horrible. I had constant stomach aches. Everything I ate just ripped through me and came out the other end. I resented the purple walls of the bathroom and the fact that we were in the middle of house renovations and I had to spend so much time in the most hideous bathroom in the city. No matter what I ate, nothing changed.
By March, I had dropped more weight and had a deep burning sensation in my stomach. A constant throb that made me sleep with a heating pad turned on high and pressed against my stomach and rib cage. I was hardly working and spent most days laying around my house, feeling gross and attempting to “work” by spreading things out on my bed and staring at them, as if articles would get read and papers written if I sat there and stared long enough. My doctor put me on pills: pain killers, muscle relaxants, relaxants that are supposed to help stomach spasms, antidepressants, antianxiety meds, heartburn meds…we tried random things for weeks and weeks. For awhile, the burning stopped, but the stomach aches didn’t, nor did my constant trips to the bathroom. Blood work came back negative for allergies and intolerances, despite the fact that I had cut out all dairy the year before due to my inability to keep it down.
I decided to start getting opinions from other people about elimination diets. I was in the thick of it, making dietary changes and trying acupuncture and herbs and whatever else I could find when I had a bike accident in early June and broke both my elbows. The next part of the story involves how I got my first endoscopy and colonoscopy while rockin’ two arm casts, broken teeth and a concussion. I know you can’t wait.
i made a list of 2013 goals over on madebyrachel yesterday and at the top of the list: blogging here more. i had hoped to do more blogging here during the fall, but the semester got crazy and i was focused on course work and teaching and putting out a winter collection and so on and so on…
i’m pretty good at keeping resolutions, so i don’t shy away from making them, even if i don’t share them publicly. given my limited diet, i rarely make goals related to eating because i’m already a relatively healthy eater. i work out at least 4-5 times a week, and i love my gym and the people who go there. i feel like i’ve finally found a fitness home that works for me. but i know my vices, so in the spirit of trying to live healthy and support others in the process, i’m gonna list my health-related goals for 2013, in order of how hard they will be to accomplish (easy to hardest):
eliminate refined sugar
drink fewer than 4-5 alcoholic drinks a week
drink fewer than 2 cups of coffee a day
do one pull-up (you can see my first pushup ever here!)
it’s january 3rd and so far, i’ve managed to make it through the first three days of 2013 with no refined sugar, no booze, and only 1 cup of coffee. i did 45 pushups (the one my knees kind) yesterday morning at the gym. i did half of them well and the other half i barely got myself off the floor.
i also made this superfood recipe from Iowa Girl Eats, a sweet blog i found through pinterest. it was amazing. i took out the black beans, as 2012 finally taught me that my body hates beans and lentils. while they haven’t been added to the enemy list yet, they have graduated to the eat-in-tiny-amount-and-rarely-if-you-want-to-enjoy-life list. sad to loose that source of protein but i was sick of suffering through the digestive misery. oddly enough, i was out of quinoa, so i used a long grain brown rice that has a nutty flavor and is super high in protein. i’m excited to see what else is on the Iowa Girl Eats blog for recipes. scope out her long list of yummy eats here!
happy new year!