Category Archives: Celiac

Lessons from the Whole30 Challenge (Or, the importance of mindfulness)

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Somehow, it’s already August. I always think summer will mean extra time, but with freelancing, summer classes, and adventures with my two-year-old, the weeks have flown by, and the hours are full.

If you read my interview with Dr. T. Colin Campbell, author of Whole, over at WBUR’s Commonhealth, you know nutrition has been on my mind lately. For the past few months, I’ve incorporated a lot more vegetarian meals, eliminated dairy, and really examined what we buy and what our habits are.

And then my husband started doing the Whole30 Challenge—you know, the one that’s all over the Internet these days and often invites comparison to the Paleo diet. In case you’re not familiar, here’s a quick summary: for thirty days, eliminate dairy, gluten, all grains, legumes, sugar (including honey, agave, and alcohol), seed oils, etc. to calm down the inflammation in your body. Basically, you should eat plenty of clean, whole foods–plenty of vegetables, along with protein, fruit, and healthy fats like olive oil, coconut oil, avocado, etc. After the thirty days, can you assess what you’d like to try and introduce back into your diet, and what you’re better off avoiding.

The changes in him were immediate, and not just in terms of weight loss. His congestion and joint pain decreased, and his energy levels increased. We’ve never been huge consumers of processed food (being gluten-free and then also dairy-free makes that hard, anyway) but watching him, I began to see how our choices could be even cleaner and healthier.

With celiac disease and other autoimmune conditions, I am all too familiar with how inflammation can wreak havoc in your life so I jumped on board and did my own Whole30 Challenge, and it’s been a great experience. I’ve lost weight, yes, but more than that, I’ve gained so much energy (I used to drink 6-7 cups of coffee daily, and now, even with the same lack of sleep, I drink one) and I am much more conscious of what foods make me feel good, and which ones simply aren’t worth it.

For example, I know I won’t be re-introducing dairy since I don’t miss it and am less congested without it. I don’t plan on re-introducing rice or corn, but I do think quinoa has an occasional place in the rotation. I’ve discovered nightshade vegetables like tomatoes and eggplant really bother me and aren’t worth it, and gluten makes my husband feel truly horrible.

Kale is our favorite new food, and we some days we have it with all three meals. Since we never bought sweets or desserts I thought I was doing pretty well avoiding sugar, but I now see the many small ways it crept into my diet, like the cane sugar in in my almond milk and in vegetarian soups I often had for lunch. We are both amazed at how much more we enjoy fresh fruit, and crave it in a way we never did. (Interestingly, I just came across this NYT article that makes the case for eating fruit.) Olive oil and a squeeze of fresh lemon taste better than any salad dressing, which usually have some sort of sweetener.

Honestly, the hardest part for me was getting used to drinking black coffee, and while I will try it out with completely unsweetened almond milk, I now know I can drink black coffee and be okay—it took me a long time to acquire that particular taste, admittedly, but I did it, and I feel so much better without adding chemicals or sugar to it. I am not a huge red meat eater (remember, I’ve been vegan for breakfast and lunch and eating mainly vegetarian for dinner), but I’ve been getting a lot of my protein from eggs and fish, and since it’s summer, we’re throwing so much on the grill.

It’s been a great exercise in thinking thoughtfully about choices and paying close attention to what makes our individual bodies run best, and we plan to keep with it.

Have you tried the Whole30 Challenge? What benefits did you notice? Are you doing some sort of modified Paleo diet? What recipes or resources are most helpful?

Five Things on a Friday

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So, I blinked and weeks have passed since my last post. The usual spin cycle—mothering, writing, being sick, tending to a sick baby—is the culprit but we’re all on the mend and enjoying summer. (The parks! The playgrounds! The beach! So many new things for little eyes and hands to explore…)

(And, somehow, the chapters are slowly coming together. Time is not my friend these days, but such is life, right? There is nothing as clarifying as a deadline, there is nothing as clarifying as a deadline…)

With lots to write but scattered focus, here we go—five things I’m grateful for this Friday.

1.Friends. I know that might sound trite, because really I’m always grateful for my friends, but more specifically, I am grateful for the chance to see my friends. Between a hectic schedule, illness, and in a lot of cases, geography, I don’t get to see a lot of my long-time good friends as often as I’d like. Recently we all coordinated schedules and met up for a quick weekend in Washington, DC, home to our alma mater, Georgetown. Husbands came to help with babies, babies met friends from afar, and it was great. I’ve had to miss the majority of weddings, reunions, trips, and other events over the years because of being sick, and it was so nice to have everything work out this time. (Special thanks to T for being an amazing hostess!)

2.Flying. Again, let me be more specific—I am grateful I was able to fly. It has been years since I’ve been on a plane, between the usual illnesses, plus the high-risk pregnancy and germ lockdown, bed rest and then having a newborn and young infant with some health problems. And while I always come home from a plane trip sick, it was so worth it to get a brief change of pace. (Plus, Baby Girl’s first flight went so well—she smiled away and then slept the entire flight, both ways.)

3. Food. Specifically, feeding Baby Girl food. When she turned six months old, we started solid foods and a sippy cup, expecting both to take awhile to catch on. However, within a couple weeks, she was on to three solid meals a day and using the sippy cup exclusively, save for one bottle at bedtime. She had feeding problems as a newborn, has reflux, and has multiple food allergies and intolerances at this point (hoping she outgrows them all!) so it is amazing to see her enjoy eating so much and thriving. She is small for her age but one look at her chubby cheeks and thighs and it’s clear she is doing great. Everything we’ve tried with her she loves, from chickpeas, spinach, and broccoli pieces to steak, sweet potatoes, and rotisserie chicken (her favorite!) (Next up? Quinoa!) We’ve made all of her food from the start, which is super easy and a lot of fun, and since she’s been feeding herself with her pincer grasp for so long, she can pretty much try anything at this point. If she ends up with long-term food allergies or is celiac, I want her to know so many good foods exist and I don’t ever want her to feel hemmed in by dietary restrictions. While so much can change, for now she is an adventurous and happy eater, and I hope it lasts.

4. Flexibility. I admit, the spring semester kind of chewed me up and spit me out. There were too many major things to juggle, and my body paid the price. I love what I do and really enjoy my students, but I have never been more grateful for the summer break than I am this year. Working on my book full-time and having the flexibility with my daytime hours to do a lot more with my daughter is wonderful. It’s an iteration of the semester: if I am willing to do a lot of work late at night, early in the day, and any spare time, I get to do so much more with my girl—and while the book situation is pretty intense right now, we are having so much fun, and I am really looking forward to the rest of summer and watching her grow and discover new things.

5.Facebook. There are a lot of things I don’t like about FB and I have my personal page fairly limited in terms of access, but there is a lot I find valuable, too. My book page is a good way to connect with readers and have an ongoing conversation, which keeps things dynamic and relevant. I like the power of FB to harness people together for a cause, which is what has it on my bullet list today. My husband’s company, The Well Fed Dog, is supporting dogs/animals displaced by the recent tornadoes in our home state of Massachusetts. For every new FB member who joins/likes the Well Fed Dog Facebook page, we’re donating to the Dakin Valley Humane Society, which suffered significant damage in the storms. So if you’re on FB, click on the page and help the WFD assist these animals in need!

And, because it makes me smile and it’s Friday so why not smile, a recent pic of Baby Girl:

Food Allergy Love Stories…and a Giveaway!

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So, remember when I talked about striving for balance just a few short weeks ago?

Ha!

Turns out I was onto something with my apprehension, as having a baby, a full-time job, a book to write, and many other appointments, side projects, and health stuff has my head spinning and my alarm clock going off way, way too early.

While I figure out how to make this all work, allow me to resurface just in time to talk about fellow blogger and writer Sloane Miller’s forthcoming book, Allergic Girl. (You can check out her book trailer here, too.) In it, she shares practical, hands-on strategies for living a full life and managing food allergies and symptoms—from dating and dining out to work functions and travel.

In anticipation of the book’s upcoming release, and in honor of Valentine’s Day, Sloane asked some of us food allergy bloggers to think about and share positive food allergic/celiac disease love stories. What’s more, if you share your stories and experiences here, and leave your e-mail in the comments section, you will be eligible for a free copy of Allergic Girl.

Appropriately enough, one of my favorite gluten-free/celiac disease posts from a few years ago is called “Food is Love.” It tells the story of how my husband and I became a couple right after I was diagnosed with celiac disease, and how food played a role in bringing me closer to him and in bringing me back to myself. If you have a second, please click back and re-read it, and then share your positive food stories in the comments section here.

Not only will you have a shot at a free copy of a great book, but you’ll make Valentine’s Day a little more festive ‘round these parts.

This year, I’m navigating a gluten-free, dairy-free, and soy-free Valentine’s, so I am back to making adjustments and accommodations. But, if it means my little girl can continue to breastfeed without getting sick due to her allergies, then it’s totally worth it to me. I suppose that’s a positive food/love story of a different kind, isn’t it?

I’ll be back later this week, and the giveaway goes through February 18, so you have a few days.

Everyone’s a Critic

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Before my daughter was born, I bought all kinds of books: infant development, breastfeeding, sleeping, etc. I pored over various titles online, reading through reviews and comments, and dog-eared pages for information I thought might be important.

And then she was born, and aside from the basic medical and developmental stuff, I rarely looked at any of them. Instead, I focused on getting to know her, and figuring out her cues so I could respond to them appropriately. All the books on sleep methods? Not nearly as helpful as paying attention to when she was getting tired versus overtired, and facilitating her in getting rest when she needed it. She naps well and naps regularly, she has a regular bedtime that evolved based on her signals, and she sleeps through the night in her crib. She loves her sleep, and thankfully for us, that’s always been part of her disposition.

With sleeping, feeding (I could write a whole post on the immense challenges of feeding this child), and other basic stuff, we figured out what worked for her and for us, and how we do things might not work for other families and other babies.

But with babies, sleeping and feeding are two of the most heated topics, and everyone has an opinion. From co-sleeping to cribs to bottles versus breast, the comments, opinions, and “advice” abound. Recently I read Natalie’s post where she reflected on the judgment/surprise people had when they heard about her particular sleeping arrangements. Her methods aren’t what would work for my family or my child, but they suit her baby’s needs and her needs as well.

As I read it, a post from Gluten-Free Girl and The Chef was still fresh in my mind. In it, Shauna discussed how critical we can be of one another’s food choices, how convinced we can become that our way is the right way, the only right way, instead of accepting that there are many, many “right” ways.

How many times have people told you what you should eat, or how you should cook it, or what you should avoid consuming? (Never mind what you should feed your kids!) I don’t mean the friendly advice we get, or the tips we get when we solicit help or feedback, but the unsolicited comments that really seem to imply we are doing something wrong by doing things a different way.

Sometimes when I read the comments section on online newspaper articles, or the back and forth on popular blogs, I am aghast at how judgmental people can be. Even the online reviews of the baby books I looked at were antagonistic, as if we are divided into non-attachment parenting types or attachments parenting types an never the two shall meet, as if breastfeeding versus formula feeding was somehow an indicator of maternal worth, as if how and where and for how long babies sleep is a measure of parenting success.

It boils down to lack of perspective, I think. Part of that is human nature and inevitable, but part of it is an unwillingness to see things from other points of view. In the spheres of chronic illness and infertility, lack of perspective and its close cousin, competitive suffering, are common:

People who don’t live with constant pain don’t always get why people living with pain can be unreliable, or doubt their pain altogether. People who are healthy don’t always understand how physically and emotionally draining chronic illness can be, and don’t think to check in on that. As a recent tragedy with someone I care about illustrated, people who do not look at life through the veil of depression might not see why things could look overwhelming to someone else.

We all judge sometimes…perhaps too quickly and easily.

People who have gone through multiple reproductive interventions might not have patience for people who think a few months is a long time to not get pregnant. People who are always in and out of hospitals might not see why a short hospital stay or simple procedure is a big deal to someone else.

We all compare sometimes …perhaps without considering that someone’s pain is big and real and present to them, and it does not matter what our own take on that pain is.

There is always someone convinced that if we eat this, or try this treatment, or follow this protocol, or read this one book, our problems will be solved.

We all think we have the answers sometimes…perhaps without considering that there really are many ways of doing things “right,” and what “right” constitutes varies so much depending on background, lifestyle, religion, family, etc.

The first time I had to supplement breast milk with formula was really hard—in my head, my body was letting me down, I was letting my baby down, and so forth. The amorphous “they,” the peanut gallery that dwells in the recesses of my brain, was working overtime. But as my husband pointed out, the most important thing was that my daughter was adequately fed so she could grow healthy and strong…and whatever combination of nursing, pumping, and supplementing that took was the “right” way for us to feed her. I think a lot of us can find similar parallels with this situation in the ways we negotiate and accommodate illness.

Sometimes the biggest challenge isn’t simply what others say, but having the confidence to carve out a different approach in spite of it.

Seeking Simplicity

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I’ve been quiet lately, but I want to thank everyone who has continued to check in on me, leave comments, and send e-mails. Your ongoing support and encouragement means a lot!

So, I’ve been working on this post on dealing with the medical establishment and being an active participant for a couple of weeks now. It has languished three-quarters of the way complete for several days, yet I just can’t pull it together.

For one, I’ve never found it useful or interesting to write about not feeling well or detail a list of what’s wrong. If I can take those illness experiences and draw something larger from them, great, but short of that, those kinds of posts don’t do much.

But there’s something else going on. I’m at the hospital several times a week for tests and appointments. I’ve spent too much time on the inpatient labor and delivery floor for someone who has not yet delivered.

I have participant fatigue, people.

And if I’m this sick of the medical establishment, that definitely won’t make for worthwhile reading.

So, I’m writing about blueberries.

Yes, blueberries. Aside from a brief flirtation with clementines in the first trimester, blueberries are my biggest (and really one of my only) cravings this entire pregnancy. It’s like Christmas morning to me when my husband comes home from the grocery store and tells me it was “buy 2, get 1 free” day for blueberries. I eat them by the handful when I need a snack. I eat them on cottage cheese for breakfast or lunch. I never tire of their crisp, sweet, yet pleasantly tart taste.

They are so simple and refreshing, a one-ingredient snack I just need to rinse and eat.

And simplicity is more important than ever when you’re gluten-free and pregnant. After all, being celiac has a lot rules and restrictions, and the dietary guidelines for pregnant woman are not insignificant.

The way I look at food has changed over the past 33 weeks. There is a lot more compromise and negotiation. I started eating (some) dairy again, trading off the phlegm-producing effects for the calcium-rich benefits for the baby. I never drank juice because I don’t like consuming a lot of sugar, but now I mix cranberry or orange juice with sparkling water and know that the baby loves it because she kicks vigorously.

There is also a much bigger desire to follow the “less is more” mindset when it comes to ingredients, and the negotiations continue. For example, I was thrilled to find a popular brand of yogurt that labeled several flavors “gluten-free.” I didn’t have to scour over ingredients, check corporate statements, etc to get some calcium (and coat my stomach for the many pills). Yet these flavors also included a lot of additives and two types of artificial sweeteners, which while cleared by the American Pregnancy Association, are still things to watch.

So what’s the lesser evil?

Spend some time clicking through the Center for Science in the Public Interest’s guide to food additives, and you’ll start reading those labels more carefully.

It’s a tough balance, because I am loath to obsess over every single recommendation and guideline, and I want to enjoy healthy food, not be scared or overly limited by it.

And that’s how we get back to the blueberries. We’ve always had a household low in processed foods but that’s more important to me now than ever. It is easier to eat fresh fruits and vegetables, all-natural peanut butter (nothing but peanuts on the ingredient list), freshly popped corn on the stovetop, and lean meats, chickpeas, and other legumes than it is to navigate multi-syllabic preservatives.

Plus, if you’re watching sodium intake like I am, the sky-high sodium levels in processed foods are another turn-off.

My life is completely overrun with complications and competing health priorities right now. I don’t need to deal with them when it’s time to eat a meal.

Simplicity wherever and however I can find it is so important right now. Luckily for me, my cravings seem to get me just what I need.

A High-Risk Pregnancy by Trimester

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We last spoke about chronic illness and weather, and then it went and got all humid on me and I fell into a black hole for a spell.

It occurred to me that while I’ve written about certain feelings about being pregnant, I haven’t written too much about the physical experience since I announced I was pregnant.

There is very little information out there on PCD and pregnancy—an outdated study from the early 1980s here or there, and beyond that, many of us patients rely on anecdotal experiences. I’ve gotten messages and e-mails asking for details: lung functions prior to pregnancy, medications, exercise, etc. I know I benefited from reading about this PCD pregnancy. I suspect many rare disease patients have the same problem.

Since we’re almost into the third trimester, I figured it was a good time to take stock of a high-risk, rare disease pregnancy through the first two trimesters. Even if you don’t have PCD, brochiectasis, or any of the other conditions I have, hopefully some of it will be useful anyway, particularly the emotions involved.

“The pregnancy has been challenging but the baby is doing great.”

That’s my quick and easy answer to people who know me and ask how things are going, and it really is the truth. Things have been going well, in that the baby is thriving, but I don’t make the mistake of equating things going “well” with things being “easy.”

The First Trimester*
*I’m going up to 18 weeks here, even though that spills into the second trimester, because 18 weeks was a real turning point for me.

Typical Pregnancy Stuff: I started getting queasy at about 6 weeks, and from about 8 weeks through 18, I had a lot of morning sickness (like, throwing up for hours each day, anywhere, anyplace). I was pretty tired, though many things could explain that. I’m reluctant to focus on this—after all we’ve been through I swore I’d never complain about pregnancy symptoms. Plus, unless you’re one of the people with really severe, constant, dehydrating nausea (and I know some people truly suffer with this) it’s not exactly a news flash to be pregnant and tired/sick to your stomach. I didn’t mind it that much because it made me feel like a “normal” pregnant person.

Other than that, we had a ton of ultrasounds, very frequent doctor appointments, and other than worries very early on, each scan showed normal growth. Our NT scan went great, all blood work looked good.

Illness-Related Stuff: A lot of the first 18 weeks were rough from an illness angle. I got sick in February and it didn’t fully resolve until May. I was hospitalized for a few days in late March and the weeks following that were the worst. Because my breathing was so labored and the medicines to help it are stimulants, I went weeks and weeks without sleeping more than 2-3 hours a night. When I did sleep my wheezing was so audible I’d hear it in my own light sleeping consciousness (and wake my husband with it) and my dreams were filled with the actual wheezing filling the room, dreams where I was suffocating. I was working a full time job and several part-time jobs (where no one knew I was pregnant yet) and with the lack of sleep and the infection, other medical conditions, the throwing up and, you know, being pregnant, it was a struggle.

Other illness stuff: my thyroid was monitored closely. I saw a nutritionist to make sure I was getting the right amounts of nutrients due to being sick to my stomach a lot and being celiac. My adrenals held up despite having to go back on steroids. I stayed on suppressive antibiotics the whole time, and had IV antibiotics for a short spell.

Emotions: All over the place. Thrilled beyond description to be pregnant. Terrified when I was in the hospital and on some serious meds that the baby would suffer (she didn’t, as many ultrasounds confirmed.) Guilty that something with my body could potentially harm her, when it was my job to protect her. Worried that the whole pregnancy would be like this, cycling in and out of the hospital. Cautious about telling people or “acting” too pregnant in case something happened. Lonely/isolated after being in “lockdown” months due to infection and not being able to contract anything from others (just work-home-work-hospital-home) but knowing it was worth it. Grateful and still in awe this was actually happening.

The Second Trimester*
*Starting this from week 18

Typical Pregnancy Stuff: The stomach problems died down around 18 weeks and now it’s mainly indigestion with very occasional sickness. I started feeling movement at 16 weeks (very light) and by 22 weeks, felt movement all the time. No matter how many times a day she kicks or squirms, no matter where I am or what I am doing, it always makes me smile. It is the best thing ever. Her kicks make my husband laugh out loud, and I could hear that sound forever.

The anatomy scan went well (the second time around) and all body parts and systems looked good. We found out we were having a girl(!). I had my glucose test quite early because of my steroid use, history, and increased risk, and passed it. (Yay!) We’ve had a bunch more ultrasounds and very frequent appointments (every week or two since early in the first trimester) and entered the “ultrasound at every appointment” realm at 25 weeks (and not the quick, in-office portable ones, the real deal.) She continues to do really well, measuring on time for everything and moving around a ton. We feel really comfortable with our high-risk maternal fetal medicine doctor, nurse practitioner, and nursing staff, and my lung doctor sees me more often than he did and is totally in the loop.

I’ve started to really show recently. I’ve had SPD (pelvic bone out of place, hip/thigh/back pain) for weeks now, but learned exercises and stretches to help it, and get in/out of cars and bed more slowly. Again, it’s not something that bothers me because it is also sort of normal to have those pains, and that is reassuring to me in its own way. My feet have started to swell but summertime flip-flops make that an easy fix.

Illness-Related Stuff: While some of the risks are much scarier, in some ways the second trimester is way better than the first.The winter/spring nastiness finally died down in May. Now I have really good days and really bad ones, and take advantage of the good ones. The humidity is way more challenging than it normally is for me. Some low oxygen readings prompted my team to have me get a pulse oximeter and take readings on bad days when I am not moving air. I learned a baby’s threshold for oxygen is much lower than ours, so a level in the low 90s or high 80s is problematic; mid-80s could be lethal. So I have a certain reading I am supposed to call them if I hit, and they’ll admit me and put me on oxygen. I’m still on (safe) suppressive antibiotics because a fear is an infection could trigger early labor but right now do not have an acute infection.

I also check my blood pressure a couple of times a day because at around 20 weeks, I started having high blood pressure. I’ve been schooled on the other warning signs of pre-eclampsia and keep an eye out for them. So far, it’s just high blood pressure and again I’ve been given a certain BP reading I shouldn’t go above, and if I do, I need to call, and need to call if I notice any of the other symptoms of pre-e. I try to stay on top of different readings without worrying unnecessarily or getting stressed out.

Other illness stuff: My thyroid is behaving itself, my intense food aversions have mellowed and I have no issues with managing the celiac stuff. I am tired, but what pregnant woman isn’t. Plus, days when I am not moving a lot of air or really work to breathe wear me out, but that is nothing new.

Emotions: Sheer joy. Intense relief when we hit the milestone of viability. Apprehension about keeping her safe and sound in there for at least another 10 weeks. Feeling powerless sometimes when I think about something wrong with me hurting her or causing early delivery. Encouraged that we have all sorts of plans and protocols in place should any of our major potential scenarios play out. Hopeful that things will go smoothly and she will get as close to full term as possible. Proud of my body for doing its job and allowing her to grow; frustrated when I allow myself to think it’s the same body that could cause real problems. Incredibly excited to meet her, and so grateful to get the chance to experience these milestones and feel her grow inside of me. Excited to get to the third trimester, and aware it will likely be an intense few months with even more monitoring, appointments, etc.

There are a lot of moving parts in any high-risk pregnancy (heck, in any pregnancy, high-risk or not!) but I feel like we have a good handle on the variables we can somewhat control, and I’ve accepted some things are beyond our control.

I wouldn’t trade a second of it, and most of what we’ve faced we were prepared for. So far, it could have been a lot more complicated, and we’re grateful for that. It is an amazing experience we doubted we’d ever have, and we try not to take a second of it for granted.

I’ll post more later on third-trimester experiences and concerns, but end with the most important point of all: the baby is doing great. With that in mind, everything else is manageable.

Gluten-Free and Pregnant

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I’m being totally honest when I say that I am glad I was diagnosed with celiac disease. When you live with a lot of conditions that are hard to treat and manage even with lots of medications, knowing there is something wrong you can manage through what you eat alone is a liberating, empowering thing.

Most days, I barely even think about being celiac. The way we prepare food is now more of a lifestyle than a dietary chore. I know what questions I need to ask, I know the ingredients to look out for, and I know the best places for me to eat. I am always vigilant, of course, but it’s not like I wake up and think about eating gluten-free as a challenge or as deprivation.

I realize not everyone feels the same way, and I totally get why people take awhile to adjust and grieve over many things they can no longer enjoy. But for me, the diagnosis was a turning point, and brought about many positive changes in my attitude towards food.

I’ve always been ridiculously conscious of what I eat. Spend a lifetime (literally) on steroids, and you spend a lot of time passing on birthday cake (at your own birthday), sticking to the salad bar, and wondering at what point a diet consisting of 95% vegetables and chicken/fish will work for you. (You also break tons of bones, destroy your adrenal system, and have lots of other fun side effects but I digress.) In those days, though, I was focusing on calorie content, not necessarily quality.

All that changed when I began eating gluten-free, and I now find satisfaction in knowing how few ingredients are in each of the meals I eat, not how many calories are there.

I’ve noticed a further evolution in my attitude towards food since I became pregnant. On the one hand, I am more vigilant than ever about cross-contamination and accidental “glutening.” Coupled with the dietary restrictions all pregnant women are encouraged to follow regarding caffeine, certain fish, shellfish, lunch meat, soft/unpastuerized cheeses, alcohol, etc, there are certainly many things to keep in mind and avoid.

And I’m not going lie—with weeks and weeks of violent and long-last morning sickness (at one point I was conducting virtual office hours with a bucket in one hand and typing with the other), the idea of a simple saltine was (is) appealing.

But I don’t find the dietary limitations, well, limiting. I feel really good about what I put into my mouth. You see on message boards sentiments like “whatever you eat the baby gets first” and my doctors tell me the baby takes what he/she needs from whatever I eat. I’ve gone back to (limited) dairy consumption for more calcium, and started eating breakfast every day. Knowing the bulk of what my baby gets comes from cottage cheese, vegetables, nuts, yogurt, and lean proteins makes me feel like no matter how wacky my body is and how medically intensive this pregnancy is, I am doing something right for this kid. No processed food. No junk food. Nothing overly salty or fried.

Sometimes it is challenging to balance my (many) medications with prenatal supplements and vitamins since some need to be taken on an empty stomach and others on a full stomach, but I’ve incorporated smaller snacks throughout the day and have found somewhat of a groove.

Because I had to go back on steroids at one point in this pregnancy, and because of my history of steroid use and related problems, I am at an increased risk of gestational diabetes. We’ll see what the test reveals, but in terms of what I eat, I know I am doing what I can to set us both up for a healthier outcome.

Why I Participate in Medical Research

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Um, it’s March.

How did that happen? In a blink, the late classes that used to start when it was dark now only end in the shadows of dusk, and tiny shoots of early spring flowers are poking through slushy dirt.

It’s been awhile. Actually, it’s been the longest stretch of time in between posts I think I’ve ever had. Usually, silence equals bad news in my world, but thankfully my absence is not the result of acute illness and fragmentation like it was when I made my confessions here last March.

Instead, it’s just a lot of medium-sized things piling up, leaving me standing in a pile of excuses and hating hearing the words coming out of my mouth.

You see, I meant to write a post this weekend in honor of Rare Disease Day, a cause that means so much to me. But I was out of town and then I got glutened, which totally threw me off my game. It’s a few days late, but my meek attempt at fulfilling an obligation I feel strongly about is to instead point you to my Rare Disease Day post from last year, since all the points still ring true.

(How ironic is it that on the heels of my last post on restaurants doing more to accommodate food allergies I went and got glutened for the first time in quite awhile? And this was after speaking with both an employee and a manager and being assured beyond all doubt the marinade on the chicken did not have wheat. Super. I know it wasn’t the lettuce underneath the chicken that made me wretchedly ill…)

And I meant to write and submit a post for this edition of Patients For a Moment that answered the questions: What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

But I didn’t, because each night that week I came home with the best of intentions but by the time I battled traffic and had chest PT it was already 8pm and I hadn’t started dinner and my work inbox needed me and man, my brain was tired. And as much as I wanted to elegantly dissect the ramifications of being a lifelong patient and never knowing what it was like to live without illness as my near-constant companion, I couldn’t get the words from my brain to the screen.

See? Excuses. Valid and truthful, yes, but in the end, meaningless.

But there’s something else I’ve been doing the past few weeks (months, really) that I don’t need to make excuses for, something that relates to the Rare Disease Day and to our identities as patients.

I’ve been participating in research studies. From broad public health studies launched in the ER to short, three-week surveys to long-term trials with blood work and follow-ups, I’ve jumped in whenever I’ve been approached by a research assistant. Sometimes, the studies have little value to my personal situation but are part of worthwhile projects in communicable diseases or prevention. Other times, the studies are directly related to what I live with and am going through.

I am not exaggerating when I say I wouldn’t be alive and certainly wouldn’t have the quality of life I do have were it not for medical research, for the thousands of participants or “subjects” who have volunteered for studies before me and for the researchers and scientists who launch these investigations.

From my point of view, any time I can participate in a research study it’s a tiny way of giving back, and of hopefully contributing to something that will positively impact other patients down the road.

For rare disease patients, the need for research is especially critical. So it may be a few days late and it may not be an official Rare Disease Day post, but consider this my public service announcement for the week.

And at least this is something I don’t have a lame excuse for these days!

Gluten-Free Dining, With a Side of Controversy

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A couple of years ago, I wrote about proposed legislation that aimed to increase food allergy awareness and ingredient familiarity in restaurant kitchens. Championed by superstar chef and food allergy advocate Ming Tsai, the proposed bill would also ask restaurants to put a notice to customers on the menu that it is their obligation to inform their server of any food allergies.

At the time, I wrote “As customers, it is our job to advocate for ourselves, ask questions, and disclose relevant information, just as it is the responsibility of servers and kitchen staff to try to answer our questions as thoroughly as possible and accommodate us as much as can be reasonably expected. This bill makes that process a lot easier.”

And I still strongly believe that. Between understanding and preventing cross-contamination to keeping a master list of all ingredients, such moves make the dining experience easier for both the customer and the wait staff, who would have access to a lot more information when customers inquire about the menu. It’s about shared responsibility.

Imagine, then, how pleased I was last week when I saw this update in the Boston Globe about how the Mass Department of Public Health plans to implement these changes this summer.

(And, coincidentally, having just dined at Ming Tsai’s Blue Ginger again recently, I can vouch for how stress-free and relaxing the experience it is when you know your meal is safe.)

Perhaps I am just naïve, but what I was not prepared for were the angry, ignorant, and vitriolic comments readers left at the end of the article. Sure, there were comments that applauded the measures and saw the potential, but I was shocked at how many were so passionately awful about it. For some, it seems that any legislation, whether it directly affects them or not, is anathema and is yet another example of the “nanny state” liberal politics in Massachusetts.

Whatever.

Here’s the rub: if you don’t have food allergies, you don’t have to ask any questions, and nothing about the food you would have ordered anyway will change. This bill isn’t an iteration of Big Brother and won’t dictate what you eat, it will simply make it safer for others with food allergies to order food, and will make it easier for kitchens to share information about their ingredients.

Others complained that waiters will have to now explain the entire menu to everyone, or that the private sector should not have to cater to people with food allergies with the government looking over their shoulder.

Huh?

Only people with food allergies and specific questions about dishes will need explanations, and if that’s not you, why do you care? And if someone in your dining party has allergies, why would you begrudge that person his or her questions?

I just don’t see how training kitchen staff on clean cross-contamination measures or having a comprehensive list of ingredients on hand is forcing the private sector to cater to us.

I’ve lived with a diagnosis of celiac disease for six years and I’ve learned a lot about how to eat gluten-free. Through trial and error, I’ve also learned how to eat out safely and with confidence. I love it when places have GF menus, but I don’t expect them. I go out knowing the risks and am fully responsible for them. I alert my server of my issue and ask questions politely. I’m not demanding, and if all I can eat is a salad (and that rarely happens these days), I am fine with that.

I don’t expect staff to cater to me, and I don’t get bent out of shape when it turns out there isn’t much to eat. That’s the risk I take when I go to restaurants without GF menus.

But what I do expect? I expect that when I ask a few simple questions, the staff will be able to answer them. I expect that when I am expressly told something is GF that it truly is safe, and hasn’t been cross-contaminated. Implicitly, that means the kitchen understands that telling me something is GF means they’re telling me I won’t get sick. If this bill streamlines this process for all parties involved, that’s great.

Fortunately, my risks are not potentially life-threatening the way they are for others with severe food allergies. I take them extremely seriously, but if some uninformed waiter serves me food that contains gluten, I will be sick for a few days. It’s unpleasant and unnecessary but in the immediate moment, it won’t kill me.

Others aren’t so lucky. Is it really that inconvenient to make sure the people preparing the food know what’s in it?

My personal favorite of the comments went something like this: Shouldn’t people with allergies know that?

We’re not under any illusions our dining staff should be responsible for diagnosing us. We’re well aware of our situation and that’s why we disclose any allergies and ask questions.

I was once on a plane with a man who was outraged he couldn’t eat peanuts on the flight because someone on board had such a severe allergy he/she could experience anaphylaxis from being near them. He didn’t even have peanuts; he was incensed that someone’s life precluded his right to eat hypothetical peanuts.

Yikes.

To all the angry, put-out people out there, perhaps if they were to develop food allergies they would refrain from eating outside their home. But if they are ever in the position where they want to be social and go out to eat and what they eat could hurt them, I hope for their sakes they receive the correct information.

Thyoliday Blues and Truths

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Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

Have the holidays and your experience of them changed since you’ve been diagnosed?
Yes! In addition to thyroid disease, I have celiac disease, primary ciliary dyskinesia (a progressive, rare genetic lung condition), bronchiectasis (another lung disease), and other odds and ends. I’ve been sick since birth, but was not diagnosed accurately with most of these conditions until my early twenties. I used to spend weeks in the hospital every year, and spent several Christmases in a row in the hospital, including one Christmas Eve being transported from my hometown hospital to my large city hospital in an ambulance.

Now that I know what I’m dealing with and have different treatments, I’m not in the hospital as much. I’m still usually sick at Christmas, but I’m at home when I am!

What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)
We used to have a big Italian feast with our extended family on Christmas Eve, and I loved my Nana’s baked stuff shrimp and my mother’s chicken parmesan. I was actually diagnosed with celiac disease right before Christmas one year, so that first holiday was tough but since then we’ve all adjusted. I bring a risotto dish that is now a crowd favorite, and there is always a protein cooked separately (and with no cross-contamination) for me. I appreciate the effort people make for me, and I like that I’ve introduced them to new foods they enjoy.

Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?
Not really. Sometimes there is still some confusion about what is/isn’t gluten-free, but it’s never anything malicious—usually just someone telling me I can’t eat potatoes or rice when I can. There is a lot of serious illness in my family (and a lot of thyroid disease, too), actually, so we’re all sort of used to it. We just avoid asking, “How are you feeling?” at holidays.

How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?
It’s such a busy, germy, chaotic time of year that I am usually sicker to begin with, so I need to keep those factors in mind and just pace myself. I do a lot of shopping online so I don’t have to be out in the crowds, and I make lists so that when I have the energy, I know exactly what I need to do and buy.

Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses? If so, how do you educate them?
Sometimes, yes. As I mentioned, the food issues can confuse people. My immediate family understands my other conditions well, but when you have very rare diseases, there is always a lot of education involved. People who don’t see me day to day might not understand how quickly I can go from okay to pretty sick, or just how many weeks an infection can linger. Conversely, sometimes I have a terrible-sounding cough but actually feel pretty good, and that can be confusing, too, I think.

Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?
Yes! Christmas as an inpatient (or in an ER isolation room, or an ambulance) tends to have a dampening effect…

Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?
It wouldn’t be a hate letter…more a letter of mutual understanding: I’ll do what I can for you, my slow-moving thyroid, and you keep doing your best for me.

If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?
It can be really difficult to diagnose—I think people think if one baseline blood test comes back “normal” the case is closed. Not true! I also don’t think people realize just how much the thyroid is responsible for, and how completely out of whack your body can be if your levels are not correct.

What is the greatest misconception regarding thyroid disease and thyroid cancer?
I think people sometimes consider thyroid disease a quick fix—you take the test, pop a pill, and that’s it. Now, while I like the fact that of all my conditions this is one where I can actually take a pill and it makes a big difference, it isn’t that simple. Patients need to monitor and maintain their dosages, and lots of things (other medications, certain foods, etc) can interfere with the correct dose.

What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?
I’ve had doctors tell me that my lungs are bad because I’m stressed out or not taking my asthma medication (um, no, probably it’s because of the two progressive lung diseases, neither of which is asthma, but thanks!). I’ve also had people say really rude things about people with chronic illness in front of me, without knowing my situation: people who are sick shouldn’t have children, they would never marry someone who was sick, etc. Awkward! I usually just fume about it with my husband later.

Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.