Monthly Archives: January 2012

I’m sorry, ma’am, but I fear this here butter might hurt you.

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The window of a little market in Enniskerry, Ireland. © Melissa Palomo

I love traveling. A lot. I love new cultures, meeting new people, buying tchotchke crap for my friends and family back home, and trying new food. Enter sad face here. I love food. And I love it even more when it’s labeled in another language and you have no idea what it really is that you’re eating. So when I was first diagnosed I kind of freaked out – thinking “OMG I can’t ever travel again! What the hell will I eat? I am going to cryyyyyyyy because this suckkkkks.” (Cue the mourning period all over again.)

I realized after a little research that I was being ridiculous. (Wouldn’t be the first time that has ever happened.) Sure, traveling with Celiac disease was going to take a little more planning, but it wasn’t going to be impossible. We ended up booking our first international trip to Ireland – a country that is known to have a higher instance of peeps with gluten sensitivity – and went in March 2010, nearly a year after my diagnosis. It was amazing. We stayed at the Ritz Carlton a bit outside of Dublin in a little town called Enniskerry (thank you TravelZoo for the killer deals! I couldn’t have done it without ya!)

I screwed up big time, though – in my excitement of the fact that I could find so many “gluten free” items – I didn’t stop to think about cross contamination. So, I ended up getting sick. The entire last day we were there I had to sleep. So my tip to you? 1 - plan your “must sees” for the first few days if you’re a GF traveler – just in case you are too worn out by the end. I had to miss our big castle trip to sleep. What a bummer. 2 - don’t get lazy and assume that even gluten friendly Ireland can handle ya. I was fooled by the amazing sight of gluten free brownies in Starbucks! Starbucks. Now Starbucks is like my holy land – so seeing GF brownies in the case literally made me cry tears of joy. I probably looked like just another stupid American but to me the sight was glorious and I didn’t care who knew it. (Please note – if you’re reading this Starbucks, I’d really like you to please address the issue of ingredients lists for your drinks. Thanks.) 3 - Have a backup plan. This may seem like common sense – but I learned I need to carry things from snacks to protein shakes to “just add water” meals with me when I travel. Ok, yes, I could sulk and whine that I don’t get to eat everything I *want* to – but eff it, I’ll gladly eat a snack pack of almonds or add some water to my cup o’ gluten free somethin’ or another to travel through Ireland or Amsterdam or Thailand. Because that’s just way cooler to me than staying at home eating in my own home.

On our way home, we flew Delta from Dublin and connected at Chicago O’Hare before coming home to LAX. I had requested a gluten free meal on the plane for both there and back, and had been pleasantly surprised going to Ireland. The way home, however, left me greatly peeved.

Yes, I went back in my twitter feed from nearly 2 years ago and found this. They had marked my meal as GF, but it was NOT GF. But hey, good thing I came prepared and had my own bread from Ireland still in tow, I could have some fruit and bread! So the flight attendant brought me some fruit. With crackers on the plate. UGH – ok, I can deal with that and eat around it. But then, when I asked her for some butter? She handed it to me. And then took it right back. In her most condescending southern accent, she proceeded to tell me “I’m sorry, m’aam, but I fear this here butter might hurt you. I could lose my job if you decide to sue the airlines.” Lady – if I had even thought about suing it would have been over the sandwich. And cookies. And crackers. NOT over the freaking gluten free butter that won’t hurt me. (Please note I wouldn’t sue – even over those things. I would, however, tweet and hold a grudge and blog about these things two years later.)

What that experience made me realize was not only what I mentioned above, about coming with a back up plan (yup, I bring my own salads and things for the plane rides now, just in case) but that the general population is stupid. Ok, I can’t entirely fault the flight attendant for being an overzealous butter hoarder, but I realized you just can’t expect anyone else to get it. You can try – as nicely as you want – you could throw a gluten free cookbook at them – but it doesn’t mean they will get it. Ultimately you have to take your diet and your health into your own hands and not expect anyone else to “get it”. Be proactive. Do your research. Pack your snacks. Even if you’re tired of protein shakes. Bring a bottle of pepto bismol or 4 if you need it. Because, for me, it’s better than not traveling at all. But don’t get mad at the idiots along the way – I’ve done that and it did me no good. Because let’s face it – before your own GF journey, you might have been a butter hoarder, too.

Celiac disease for you would be like no mashed potatoes for me.

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When I was first diagnosed, I went through a period of mourning. Like full scale – I had just lost a limb – ugly cry – kind of mourning. I tried to keep myself together, but one day at my day job they announced that we’d be having an all hands meeting at a local restaurant complete with catered lunch. I went in to ask one of my bosses if it’d be ok if I brought my own food (still feeling very insecure about being “different” in front of my coworkers) and out of nowhere I burst in to tears. Here I am, a young woman in the professional world, breaking down in the ugly cry in front of a male VP. About food. I felt like I set all of the women in my office back 50 years at that moment – for that I apologize. But it was something I just didn’t see coming. And something that many people around me didn’t really understand, either.

I went home that night and called my mom and cried some more. Partly because I was mourning over my loss of ability to eat gluten – and how that had changed my life – and partly because I was so embarrassed that I had just cried in front of my boss in the way I had. She was embarrassed for me, too, and not in a “oh poor thing, let me give you a hug” kind of way. In a “OMG Melissa I can’t believe you embarrassed yourself like that. Get your crap together” kind of way. I ended up going crazy on my mom. “You don’t UNDERSTAND! It’s not just that I can’t eat gluten anymore. This changed my entire life! I have anxiety when I go out to eat now (at the two places I am comfortable eating) because I’m scared I’ll get sick!” You know how she responded? “Well Melissa, I know you love bread. It’d be like if I had to cut out mashed potatoes because I love them so much.” W.T.F? I love my mom, but that comment made me so angry. Anyone who has been diagnosed with Celiac, gluten intolerance, or some other life altering food allergy knows it’s not *just like* cutting out one favorite item from your diet. But to the rest of the world, even my own mother, they just can’t understand why it’s such a big deal. So you change your diet a little, no big deal, right? Wrong.

Celiac disease or any major diet change is a big deal. It means you change the way you eat. The way you think. It means not only do you have to cut out bread or crackers, but you have to start reading labels for meats, sauces, salad dressings, chips, snacks, CHOCOLATE. (That one just pisses me off. Did you know there is barley in a Milky Way candy bar? Who puts barley in chocolate?) It was things like that that I never saw coming. And that’s just what you have to worry about at home. Going out to eat is worse. Not only are there very limited restaurants that even offer a GF menu, but within that you have to worry about cross contamination. It can be overwhelming and crippling at times. I can’t even tell you how many bottles of pepto bismol pills I have floating around in my car because I am terrified that I will have an urgent need of pepto one day and won’t be able to find any. So instead, I carry 14 bottles around. Because 14 is better than 0. Just in case. (Ok, that’s an exaggeration on how many bottles of pepto I have in my car. But not by much.)

It wasn’t until one day we went to a local restaurant with a gluten free menu that my mom “got it”. We sat down. I had printed out the gluten free items from their website. We spoke to a manager about the items and he even brought out the ingredients so I could read the labels. Everything was fine, right? I mean, we went through every last option and it all looked ok. Except that before we even got home that night, I was crying from how much pain I was in from having been “glutened” by something in that restaurant. I don’t blame anyone there – they did the best they can. It’s just that you can’t ever fully prevent cross contamination in a shared kitchen like that. It wasn’t until that night that my mom finally said “I get it now.” She finally understood it wasn’t about me just cutting out my love of bread. And I wasn’t just being snooty about not wanting to go to their favorite restaurants. She finally understood that having Celiac disease was more than just a diet. It was a lifestyle change. And more than just that – it was a difficult change to make.

Celiac disease changes more than just what you eat. It changes the way you think. The way you live. It changes your social life. And like me, it may even give you anxiety. But you know what? It gets easier. It really does. One day you will be less self conscious about it. One day you won’t be sad that you can’t eat at your favorite restaurant anymore. One day a new restaurant will open with a gluten free menu and you’ll be so thrilled you can barely stand it. And one day, we can hope that others will understand, too. I believe that one day, they will. And we’ll have the best freaking gluten free cake to celebrate. And maybe we’ll have a great gluten free beer option by then, too. I’m happy to volunteer to be a tester. But in the meantime, you aren’t alone. Don’t let anyone tell you you’re crazy. You’re not. (Well, I can’t say that about everything in your life. But about Celiac? I’ve got your back!) It’s ok to mourn. To be frustrated at times. Just know that there’s a bunch of people here for you that know how you feel. And know that it gets better.

Gluten sucks, and sometimes so do doctors.

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I don’t think all doctors suck. Some of them, however, undoubtedly do. I’m sure, like with any profession, doctors can become jaded and easily burn themselves out. I’m sure they see their fair share of people who think because they know how to use Google, they must be as intelligent and as informed as their doctor. But when doctors stop listening to their patients, and ignore their concerns, that just plain sucks.

According to studies, it can take an adult an average of 4.4 years to be diagnosed with Celiac disease. That’s just an average. So for my 4 months from full on symptomatic to diagnosis – it means that someone else out there was suffering nearly 8.5 years before they finally had their answer. That’s just stupid. Why is it taking so freaking long for people to find out what’s wrong with them? Doctors. And a lack of advocacy on the patient’s behalf. Ok – I’m not going to pretend like doctors are evil. They can do a lot of great things and undoubtedly they help a lot of people feel better. And I’m not going to pretend like we don’t have to fight for our own best interest. We do. We as patients need to arm ourselves with knowledge and not be afraid to disagree. (Preferably without yelling. Or throwing punches. I’ve found doctors don’t like that much. Ok, I haven’t tried the punching but I can only assume they don’t like it.)

I’m sure many people who have ended up with a Celiac disease or gluten intolerant diagnosis were told at one point they have IBS. How would the doctor know that, since, you know, there IS NO TEST FOR IBS? It’s impossible to diagnose someone with IBS without ruling out everything else. I recall when I was getting ready to go in for my colonoscopy/endoscopy, speaking to the nurse on the phone. She said “I see that you have IBS.” Poor nurse. I think I unleashed all of my frustration on her. “I DO NOT HAVE IBS! How would he know? They haven’t even tested me yet! Take that stupid word out of my chart.” Ouch. Melissa has certainly had better days than that. Sorry nurse. My point, while likely not understood as I was screaming on the phone, remains the same even today. How can you know if you have IBS if you haven’t adequately tested for the alternatives?

For many people, gluten intolerance can be tested via a blood test. I’m medical-stupid here, though, I won’t pretend to understand exactly what you need to ask for – but I read it’s something called an IgA test. I was lucky enough to have a great primary care doctor who knew exactly what to run for me (it was my GI specialist that was greatly lacking.) My blood work all came back 100% normal so I was referred to a specialist. It’s important to note that no blood test is conclusive for Celiac disease. An endoscopy is the only sure-fire way to test for Celiac. A GI Dr that told me, despite having been feeling better on a GF diet (which I did before my endoscopy – that’s a no-no, don’t listen to me), I was just suffering from IBS. In fact, he prescribed me pills that were basically great strength immodium. Gee, thanks! I’m so glad you want to put me on pills instead of *listen* to me and actually consider that I might be gluten intolerant at minimum, Celiac at worst! He was convinced he needed to do a colonoscopy. I only agreed if I could do an endoscopy at the same time. Several weeks later, I had my appointment, 2 weeks after that my Dr called me with the results. The first words out of his mouth “Hi Melissa. I’m really surprised, but it appears you have Celiac disease.” Wow. So shocked. Or not. It was nice to have confirmation for once. I wasn’t crazy. In relationship to my intestines, anyway. ;)

But you know what? I didn’t need him calling me to confirm my diagnosis to feel better. I was feeling great on a gluten free diet at that point – so while it felt nice to have validation – I didn’t need it. I was my own best advocate. I didn’t wait for someone to tell me to go on a gluten free diet. And while I always suggest you going to your doctor armed with knowledge and hoping for the best – YOU know you best. YOU are the only one in control of your diet. Don’t wait for a doctor to tell you he doesn’t know what’s wrong with you – go to them with ideas. And when they don’t want to listen? Get a second opinion. Or a third. And if you’re like me and just can’t take it anymore or you can’t handle waiting 3 months until your next appointment – what’s the harm in trying a GF diet? (Please note you should be on a gluten filled diet for testing or it can skew your results.) Or making any change that makes you feel better? No one ever died from cutting gluten out of their diet. I think. I don’t know for sure. Maybe there’s a rare condition out there. But don’t worry, I doubt you have it.

Gluten – what the heck is it and why do I care so much?

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Gluten. In simple terms, it’s a protein that you’ll find in wheat, barley, and rye. But to me, gluten is a 4 letter word. Ok – so it’s really *6* letters – I get it. (I counted on my fingers just to make sure). But some people, like myself, have bodies that reject gluten and treat it like poison when ingested. My response to finding out that my body hates gluten? “Well that’s stupid.” I mean, seriously, isn’t bread one of the most basic staples of the American diet? And you’re telling me that my intestines decided to up and one day revolt against it? LAME.

I was diagnosed nearly 3 years ago with Celiac disease (after being my only advocate – no thanks to most of my doctors, sadly) but I was lucky. It took me less than 6 months from feeling like crap every day to have a diagnosis in hand. Most people aren’t that lucky – they say it can take an average of ten years for an adult to be diagnosed. TEN YEARS. That’s stupid. It shouldn’t take that long. But, instead of waiting for doctors to jump on the “You don’t have IBS, let’s find out what’s *really* wrong with you” bandwagon, here I am. To encourage people to be their own best advocate. To support you in your own gluten free journey, and to share the things I find interesting along the way. I hope you’ll hang around, humor me by leaving a comment from time to time, and ultimately I hope that this blog can be an encouragement to other people that are on their own GF journey.