Honoring our Dads

By Rachel Sircy 

This past weekend was Father’s Day, my sister’s wedding, and my nephew’s birthday party. Sound busy? You have no idea.

I want to dedicate this blog post to the man who made all three of these things possible at once, that is my stepfather, Bob Wachenschwanz. He’s a man with a big last name and a bigger heart. Not only was my sister’s wedding this weekend, but my parent’s backyard was the site for the reception. A party tent had to be erected, tables and chairs set up, decorations set out and then all of it had to be cleaned up that same day. Bob – with help from my sweet husband (also a wonderful Dad whom I would like to honor), my brother, new brother-in-law and the groomsmen – did all of this, and still managed to walk my sister down the aisle, take my nieces and nephews on a wagon ride, and host a dinosaur-themed birthday party. At one point before the wedding, a strong wind knocked over the party-tent and badly damaged one of the poles. The groomsmen gave the tent up for lost, but then Bob showed up with his multi-tool in hand and straightened out the pole by himself. One of the guys said that he must be Macgyver, which is actually what my sisters and I used to call him when he and my mother were first married. We also referred to him as Bob the Builder – after the children’s TV show character, because the theme song to that show goes, like this, “Can he fix it? Yes, he can!”

I am sharing this story because this weekend I was reminded what a treasure I have in my stepfather. I wanted to thank him and let him know how much I love and appreciatefather and kids him. Men who put in the time and effort to love and care for their children are hard to come by and I don’t want to take Bob for granted.

I want to encourage all of you readers out there to take some time this week, or this month, to think about and show your appreciation for the wonderful Dad in your life – whether he is living or is gone, if he’s your stepfather, uncle or just a dad you happen to know. Let him know that you see his hard word and you are thankful for him!

Wrapping Up Celiac Awareness Month

By Rachel Sircy

Well, May 2019 has come and gone. It’s no longer Celiac Awareness Month, but I would encourage each of you who either have celiac disease or know someone who has celiac to continue to spread the word. It’s a real issue and it should be taken seriously.

My post this time will be an extremely short one (for me), because my husband and I have just moved and we’ve also had family in town for the Memorial Day holiday. I managed to stay completely gluten free for the holiday, and I realized this past Memorial Day that staying gluten free is becoming very do-able. Of course, it’s still a matter of reading labels very carefully and also of cooking your own food, or eating food cooked by someone you trust – I must here give a shout out to my mother-in-law who is so careful to make sure I have plenty to eat, even when she’s cooking to feed a large gluten-eating crowd.

Let me end this month with a hopeful note: we are farther along in medical research and in the ease of a gluten free lifestyle than we’ve ever been! Just today while grocery shopping, I came across fresh gluten free linguine and fettuccine at very affordable prices at Aldi. Later, by random chance, I stopped by a Food Lion store that I don’tFood_Lion_logo.svg 2 usually shop at only to find that they had a huge gluten free section. Food Lion isn’t typically a store I shop at because many of them don’t carry a large selection of gluten free items, but at the Food Lion in the Three Fountains area of West Columbia I stumbled upon a vast array of Schar products including: baguettes, ciabatta rolls, graham crackers (the Schar graham style cracker is my absolute favorite), Gillian’s brand croutons, Amy’s microwavable macaroni and cheese cups. It was a treasure trove. I will be going out of my way to visit that Food Lion again. So many stores are stepping up to meet the needs of the gluten intolerant. We are in a good place, and I believe it’s only going to get better from here. So, head out there and look for some GF hamburger and hot dog buns and gluten-2984643_1280enjoy your summer! (Just FYI: Aldi runs GF hamburger/hot dog buns as a summer seasonal item, though they tend to run out quickly, so if you see them there, get as many packs as you can afford. Also, that Food Lion in West Columbia had Schar hot dog buns)

It’s Still Celiac Awareness Month!

By Rachel Sircy

For readers who missed my last post, May is Celiac Awareness Month. It’s the time of year when celiacs around the globe try to spread the word about what celiac disease is and what we can do about it. This post, I’m going to continue my celiac story. I think that one of the best ways that I can help spread the word about celiac disease is to make it personal. So, instead of a lecture, I’m going to tell you a story. (P.S. If you missed the first part of this story, check out my post from earlier this month).

The story of my life as a celiac is both complicated and simple. The simple version of it is that I was sick for most of my life with celiac disease. The complicated part was living with a disease I’d never heard of and that none of my doctors had even considered as a possibility. As a child, I was first diagnosed with a vitamin deficiency at age two when my hair started to fall out. Even taking daily vitamins, I struggled with borderline anemia. By the time I was in my senior year of high school, extreme fatigue, memory problems, and joint pain plagued me and got worse and worse. My grades, which had always been good, began to plummet, and though I’d always been a little bit spacey, I started to become dangerous. I had trouble staying awake for long periods of time and began to fall asleep in class. When driving I know I was worse than most drunk drivers. I frequently ran red lights, not even realizing what I’d done until it was too late. Oftentimes I would misjudge curves in the road, and I accidentally ramped more than one sidewalk. I would also make these misjudgments while walking and would slam into almost every door frame that I passed through, sometimes hard enough to actually stop me in my tracks. My friends in my last year of high school (and some teachers) began to tease and then seriously ask me about getting tested for ADD. I had trouble holding a steady conversation for more than a few minutes. By the time I got to school each day, I couldn’t remember what I’d eaten for breakfast. One girl nicknamed me Blondie – not because I was truly blonde, but because she felt it captured the Out-to-Lunchness of my personality.

I had all of the problems listed above, but I never had any serious gastric symptoms until I was around 19 years old and had left the country to study abroad for my sophomore year of college. During that school year, I began having horrible stomach pain after every meal. It was as if hundreds of gas bubbles were trapped in my stomach, and it seemed that these painful gas bubbles were churning up fiery stomach acid that gave me heartburn I could feel in my ears. All this made me nauseated and yet, I couldn’t throw up if I wanted to. I don’t know why, but in my case, instead of vomiting and diarrhea, my gastrointestinal tract seemed to simply shut down. In short, by the time I finally broke down and went to the gastroenterologist at age 21, I thought I might have an ulcer or be dying of stomach cancer.

I had an IgA blood test done at age 21 on my first visit to the gastroenterologist. I was truly blessed to find a doctor familiar with celiac disease. When he first came into the room to see me, he asked a few questions, poked my stomach a little and said, “I’m pretty sure I know what’s wrong with you.” He hit the nail on the head. My endoscopy was scheduled for a few days after my 22nd birthday and it was the best gift I’d ever gotten. My doctor saw me again after the results came in; he read the report in front of me and when he looked up at me he said, “Yeah, I thought so, You look like a celiac.”  He explained to me that my intestinal lining, which should look like a shag carpet, looked like a tile floor. My case, he said, was fairly advanced for someone my age. I was told to go on a gluten free diet. I had no idea what this meant. I’d never heard of gluten before that doctor’s visit, and it seemed to me that everyone in that office had lost their marbles. How on earth could whole wheat bread – the staff of life – be bad for anyone? I wasn’t a health nut, but I’d been raised to believe in the virtue of brown bread and whole grain spaghetti. A nurse came in and opened a huge book called “The Gluten Free Bible” and told me I needed to throw away my toaster. I felt like I’d been kidnapped by people from an alternate dimension where people wore their clothes backwards and no one in her right mind would think of eating whole grains. I was completely and utterly overwhelmed by my diagnosis.

That’s where I’ll end my story for now. I’m going to write one more entry detailing my foray into the world of gluten free eating to finish up my Celiac Awareness Month posts.

The good news is that there are so many advances in this area of distress that I think celiacs should take heart. There is currently a bill getting ready to make it’s way through the federal government compelling the National Institutes of Health to pursue a cure and research into the autoimmune and genetic factors of celiac disease. If you or someone you know have celiac disease, it’s worth your while to get on the Celiac Disease Foundation’s mailing list. They do send a lot of emails, particularly this time of year, but they do keep you up to date on the latest research and general goings-on in the ever-widening world of gluten intolerance.  Additionally, they give you real ideas on how to make a contribution. Recently, because of their notifications, I was able to send an email to Lindsey Graham asking for his support for a bill that has recently gone before the Senate requiring drug and supplement manufacturers to label gluten in their products.

Infographic_Celiac Disease at a Glance

Medicine is an often overlooked source of hidden gluten.  Prescription and over-the-counter medications can contain gluten, and sometimes celiacs who observe strict diets can fail to get better because they are still consuming gluten through their medications. FYI, these are some places you should look for gluten if you are intolerant: medicine (pills and liquids), lip balm, toothpaste and mouthwash – in short, anything you put in or near your mouth needs to be screened for gluten.

Happy gluten free living to all my allergic and intolerant peeps out there!

 

Three New Year’s Resolutions for Celiacs

By Rachel Sircy

Well, the New Year has come and it’s the time of year to make lists of resolutions for the coming 12 months. For celiac patients, we have a long list of resolutions that are often hard to keep. A couple of weeks ago, I was having a conversation with my new primary care physician about how difficult it can be to really live gluten free. It seems to me that every time I think that I’ve got the gluten free lifestyle mastered, I find something that I’ve been doing wrong, or that a company that I trusted has changed their manufacturing practices or that I’ve made a bad choice when faced with hunger and eaten something that I knew I shouldn’t.

I also told my new doctor that it’s enough to make me cry sometimes that I cannot find a physician who knows a good deal about celiac disease. Ever since the first day of my diagnosis, I have longed for someone who could guide me through this tangled minefield of gluten intolerance. My doctor suggested, of course, that I try the myriad websites dedicated to the gluten free diet. Of course, I do often consult internet sources for the latest research on celiac disease and gluten intolerance. I pointed out to my doctor that sometimes the information that you look for online can lead to conflicting answers and contradictory advice. What one person says is safe is condemned by another person. Who is right? Most of the time, I try going by my own gut and common sense and hoping for the best.

After thinking these things over, I’ve come up with some ideas that I want to follow through with in 2019. I say that I want to follow through with them because, if I’m being honest with myself and with you, I have to admit I have a real problem with follow-through. Maybe you’ve noticed that if you follow my blog posts. Oops. But, I hope this year to be better than I was both physically and mentally than last year and I think these three resolutions will help me to do that.

  1. Actually keep a food/symptom diary. (Again, I’m using the word “actually” because I’ve started about a thousand food diaries and just ended up letting them go.) My doctor told me how important this is when I was describing some of my current symptoms to him. He said that it’s impossible to find out if the new symptoms I seem to be having an issue with are truly new without a diary of what I’m eating and what I’m feeling both physically and mentally. He said that illnesses often build on one another and that he cannot get to the root of my issue without seeing the patterns behind what I’m eating, thinking and feeling.

 If you are like me, you may want to try writing everything down by hand (I’m pretty old school myself). However, if you browse in your phone’s app store, there are a ton of apps that provide a place for you to log what you’ve eaten, the medications you’ve taken and how you’ve felt throughout each day. Some of them, like Symple, can actually take the data that you put in and create a report that you can give to your doctor.

  1. Use reliable sources. My second resolution is to make sure that any information that I get on celiac disease – and especially any that I give to you – is from a reliable source. Of course, I really try to do this anyway, but I intend to be extra careful this year. I tend to trust articles from The Celiac Disease Foundation, the Mayo Clinic, The Cleveland Clinic, Harvard Health Publishing and other articles published by trusted medical clinics. I vow to try never to put anything into this blog that has not been put out there by a source that we can all trust. Suzy Q. Blogger’s opinion on the safety of a new brand of potato chip is something that I will try not to put on this website without thoroughly researching it first. My doctor also pointed out to me a website that I was previously unfamiliar with called UpToDate.com. He said that it is a website with research-based articles that can be used by patients, but that is also a favorite place that medical practitioners go for the latest information on a number of subjects, including celiac disease. So, I will probably be using information from this website as well.
  2. Share knowledge. My last resolution is to push ahead and make more information available for everyone with celiac disease everywhere in the world. Think about it. If all the celiacs across the globe decided that they were really tired of being sick and of not being taken seriously by their doctors (if that is the case for them), we could create a huge demand for more research. Wouldn’t it be great to have answers to all of our questions? Perhaps we will not have all the answers in our lifetime, but more research now ensures a better quality of life for future generations of celiacs.

So, how do we do this? Well, the place that I’m starting is with my choice of a personal care physician. My old PCP was a very nice man, but he knew next to nothing about celiac disease and he really didn’t seem very interested in learning much about it or helping me get better. I’ve already taken the first step to fix this situation and that is that I have a new doctor. I believe this doctor is a better listener and is willing to actually help me figure out how to manage my condition and get well. (Isn’t that funny? When I was a kid, the only thing that came to my mind when I thought of being well was that I was definitely not going to get out of going to school. But now, the idea of being well haunts my dreams. I long to feel better. Don’t you?)

celiacThe second step that I’ve already begun to take is joining the iCureCeliac patient registry. This is a huge database of celiac patients that is being created by the Celiac Foundation. Once you create your patient profile, you take a long, long series of questionnaires about your disease, how you were diagnosed, your desired outcomes (like do you want celiac to be cured? Would you take medicine if it would mean you could eat whatever you want?). The purpose of this database to give researchers ideas on how to direct their research. Per their website: “Sharing your personal experience living with celiac disease helps researchers better understand the diverse and complex ways this disease impacts the lives of patients like you and your loved ones.”

You can join this data base at: https://celiac.org/icureceliac/

I truly believe that if we all push together by firstly taking charge of our health by managing our diets to the best of our ability, staying on top of the latest medical research and pushing our healthcare providers and the medical research community for answers they seem to be unable to give us at present, we can change life with gluten intolerance for ourselves and for our children for the better.

Happy New Year!

A Celiac Friendly Christmas Craft

By Rachel Sircy

I think I mentioned last year that I make Christmas ornaments for our friends and family every year. I have wanted to make homemade clay ornaments for some time, but I haven’t done it because most homemade clay recipes use wheat flour as a base for the clay. I try to keep my home and especially my kitchen as free as possible from contaminants and so I don’t bring wheat flour into my house at all. Once, I had the idea that I could use gluten free all-purpose flour to do the same job, but let’s face it, at more than $4 a pound, it would be cheaper to go out and buy ornaments than to make them out of gluten free flour.

But, I’ve found more and more lately that Pinterest has the answers to most of life’s problems. It was there that I came across pictures of lovely white ornaments made from cornstarch clay. In cornstarch clay, cornstarch and baking soda take the place of flour as the base of the clay. So, I had the answer to my homemade clay problem. Here is the recipe that I followed from a blog called, Kleinworth & Co.:

1 Cup Cornstarch

2 Cups Baking Soda

1 ½ cups Water

Combine all ingredients in a medium saucepan and heat over medium heat, stirring constantly. It takes a while, but the ingredients will eventually start to resemble mashed potatoes. Once you get to the mashed potato phase, scrape the mixture out into a glass bowl and cover with a damp kitchen towel and leave to cool for 30 minutes.

This is what it looks like cooking:

pic 1

And this is what it looks like in its mashed potatoes phase:

pic 2

At this point, you can roll out the clay and cut out shapes with a cookie or biscuit cutter. I also used a clay stamp and a metal button, to stamp the image of a crown and the words “Peace” and “Joy” into each ornament. Now, the point where I differ with Kleinworth & Co. is after the ornaments are made. Their recipe calls for the ornaments to be baked at 175 degrees for 30 minutes and then air-dried for another 24 hours. I found that this baking process actually dried out my ornaments too quickly and they ended up cracking. So, I actually threw out the first batch of ornaments that I had made and made a second batch, which I allowed to air-dry overnight on the plastic table cloth where I’d rolled them out, After that, I transferred them to cookie cooling racks and allowed them to dry out for about a week. This seems like a long time, but it kept my ornaments from cracking. If you need them to dry out sooner, I might recommend drying them for a shorter time in the oven and then allowing them to air-dry overnight.

Here is the finished product:

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And my daughter even got in on the ornament making fun.

pic 4

If your children are celiac, this is the perfect clay to allow them to make hand prints. There’s no risk of contamination with this clay. Although, of course, I wouldn’t exactly recommend letting them eat any!

Have fun and have a Merry Gluten Free Christmas!

5 GF Tips to Navigate the Holiday Minefield

By Rachel Sircy

Anyone with a gluten-related disorder knows that the most difficult time of the year is upon us. I mean, it’s a day that is nominally dedicated to thanking God for our blessings, but if we’re being honest, it’s an all day Eat-A-Thon. And, unfortunately for the celiacs in the world, most of the items on the menu for this day are covered in gravy or made of wheat flour. And throughout the holidays – no matter what particular holidays you celebrate – the menu remains heavy on the bread and soggy with gravy. So, below are the top ten things that help to get me through the holidays. Hopefully, they will make your gluten free minefield a little easier to navigate this holiday season.

  1. Cook Stuff: I know, there are myriad readers out there who don’t like to cook or who swear that they are genetically programmed to be unable to cook food. Well, I have been in those shoes before, too, and the only thing I can tell you, is to give it your best shot. If you have celiac disease or gluten intolerance, you have to take charge of your health – which means taking charge of the food that you put into your mouth. Don’t rely on others to feed you. I’m sure that if this isn’t your first holiday as a celiac, you’ve had the experience of a well-meaning relative who says, “Yes, this dish is 100% gluten free” and then after you’ve swallowed a big mouthful of whatever it was, says “because there’s no gluten in barley flour, right?” As with almost anything in life, if you want it done right, you’ll have to do it yourself.
  2. Insist on Bringing What You’ve Cooked: This may seem like a no-brainer, especially given what I’ve said above about cooking for yourself. You might think, “Of course I’m going to bring what I’ve cooked.” However, those not afflicted with gluten intolerance can tend to think of gluten free food as gross or inferior or totally inedible or poisonous. Don’t be backed into a corner. If you are not hosting the meal yourself (hosting the meal yourself may be the best route to controlling the gluten level at the table), then insist on participating in the meal by bringing something. I usually choose to bring the dishes that I like best that are the least likely to be gluten free, like dressing and dessert. To avoid coming off as rude and distrustful, let the host know that you are simply trying to take on some of the responsibility for making the dinner safe for you. Most people hosting a holiday meal feel overwhelmed as it is and will appreciate the fact that you are lightening their load.
  3. Avoid Bouquets of Flours: Okay, so for years I avoided baking because when I was first diagnosed with celiac disease I went down the natural foods aisle at the local Kroger’s and was scared stupid by the incredible number of tiny little bags of flour: almond, rice, potato, amaranth, tapioca, etc. To this day I’ve never mastered mixing all those little bags of flour together to make something useful. It’s expensive and frustrating. My advice? Forget it! Don’t try making flour blends. Unless you’re really into masochistic torture. There are now plenty of really good flour blends on the market that can be substituted cup for cup with regular wheat flour. Some of the best brands I’ve tried are: Pamela’s Artisan Blend Flour, Cup4Cup (they have a regular and a multigrain blend, both of which can be used to substitute for wheat flour in almost any recipe), King Arthur Gluten Free All-purpose Flour and – believe it or not –Walmart’s Great Value Gluten Free All-purpose Flour Blend. I have baked or have eaten baked goods made with all of these flours and they really are delicious. You may forget that you’re eating gluten free. So, get rid of all those highly specialized recipes which require all those little bags of flours. Grab one bag of flour and you can break out your grandmother’s heirloom recipes and go to town.
  4. food-791640_1920Don’t Eat Just Anything: Potlucks are popular around the holidays, it’s a great way to get together with others and share the things that we love to eat. However, experienced celiacs wince at the mention of a potluck supper. It can be a nightmare for us. But remember that you can navigate these dinners successfully. The best thing to do in these cases is to talk to the host ahead of time and make him aware of your food sensitivity. Again, bring something if you can. At the party, eat simply. Raw fruit and vegetable and cheese trays are a great place to start. Next, go to anything that is in a package with an ingredients label and read it. Don’t be afraid to ask questions, either. If a dish appeals to you, find out who made it and ask them what they put into it. Remember, if you don’t know what’s in a dish, you shouldn’t eat it.
  5. Be Prepared and Treat Yourself: Eating can be an emotional as well as a physical act. If you have to be gluten free, then you are going to have to prepare yourself for the holidays physically and emotionally. The best personal advice that I can give (gained through some painful experiences) is firstly: NEVER go to a party hungry. I know a few people who do go to parties hungry so that they can stuff themselves when they get there. This is a very bad idea for people who may not be able to eat anything but the raw vegetables. So, I recommend eating before you go. You’ll have to gauge this with where you’re going. For instance, I don’t eat a whole lot before going to my mother in law’s house because she is familiar with what I can and can’t eat and will always have a dinner that is safe for me. Office parties, church socials and large get-togethers where there will be a potluck are places where I try not to go unprepared. I eat beforehand so that I’m not dying of hunger while I watch everyone else eat. It’s also a good idea to bring a treat with you to enjoy at the party. It can be downright depressing to watch everyone enjoying things that you used to love (Grandma’s chocolate pie or Aunt Whatsherface’s Red Velvet Cake). It’s best, of course, when the party includes something for you, but this isn’t always the case. When you’re not able to take part in the festivities, you might feel cut off from the joy of the season. I have found that it truly does help, in these cases, to reserve something special for yourself that you can indulge in while everyone else is pounding down cookies and eggnog. Bring your favorite candy, cookie or snack and eat it while everyone else is having their dessert (because, let’s be honest, dessert is the most emotional part of the meal) have yours as well. What really matters is the sense of togetherness. If you’re not dying of hunger and you have a little treat help you celebrate with others, you won’t feel alone in the crowd.

Two Common Mistakes for Celiacs

By Rachel Sircy

When I was first diagnosed with celiac disease, I got some really bad advice from a well-meaning, but very misinformed dietitian. She said that I shouldn’t allow myself to go hungry just because I needed to eat gluten free. She said, if push came to shove, that I could just eat a sandwich or get a burger from McDonalds. Her primary concern was that I not feel that the gluten free diet was impossible and she thought that if I felt hungry, I might just give up altogether. She really did mean to do right by me, unfortunately, she advising me to start thinking in a really unhealthy way about my condition. She was teaching me that it is okay to cheat sometimes. However, cheating, when you are a celiac, isn’t the same as cheating on your diet when you’re trying to lose weight. The stakes are much higher and the damage that you will be doing to your body will be long lasting.

This story about my encounter with a dietitian highlights two of the most common problems that I have personally faced as a celiac. The first mistake sort of leads into the other, so I think it’s important to talk about them together.

Mistake #1: Letting yourself get hungry.

This is difficult, I know. The world is basically a food desert for celiacs and the gluten sensitive, especially when you’re travelling or in a hurry. So, what do you do? You become that person who always has food on them. People sometimes laugh at how much food I tend to carry with me, but I’ve learned the hard way that it’s never a good idea to let yourself get really hungry because that leads to eating things that you know you shouldn’t eat out of desperation. As bad as it is to go hungry, it truly is worse to cheat. You will never feel better if you are constantly setting yourself back with poor eating choices. Also, you are putting yourself at risk for damage that may take years to heal or may not heal at all, let alone the fact that you are increasing your risk of colon cancer, etc. Who wants to live like that?

And the worst part about making poor food choices is that it leads to mistake #2…

Mistake #2: Deciding whether you’ve had a reaction to gluten based on how your stomach (or body) feels.

This is one of the most detrimental mistakes I think that we celiacs make. While celiac disease does affect your stomach and intestines, it is really an autoimmune disorder. This means that the primary issue with celiac disease is not that your tummy hurts, it’s that your immune system doesn’t work right. It mistakenly attacks you instead of doing what it’s supposed to do, which is to protect you from germy invaders. Sometimes when your immune system attacks you, your stomach will hurt, or you will have constipation, diarrhea, headache, etc. But, sometimes when your immune system attacks you, you won’t feel anything. Your body, however, will still be damaged and that damage will cost you in terms of your health.

And, I’ve mentioned this before, but it’s worth saying again: don’t trust any supplement that promises to relieve a “gluten attack” or to alleviate symptoms of a gluten reaction. There is no scientific evidence that these supplements work. Remember, a reaction to gluten isn’t just an upset stomach, it’s an immune response. If those supplements make your stomach feel better, then go ahead and take them if you’ve mistakenly eaten gluten, just realize that they cannot reverse or even stop the damage that your immune system is unleashing on your body.