Every Story Counts

By Rachel Sircy

online-marketing-hIgeoQjS_iE-unsplashI know that I’ve written many times about how celiac disease affected me before I was diagnosed. The symptoms were all over the place, and no doctor seemed to be able to put the clues together to come up with what was wrong with me. I experienced no digestive issues for most of my life. The symptoms were mostly things like forgetfulness, inability to concentrate, joint pain, and debilitating fatigue. I developed stomach and intestinal issues during my late high school and early college years. It was only after the gastric symptoms – the bloating, the reflux, and the extreme pain I experienced right after eating (which kept me from eating more than about a cup of any given food at once) – became unbearable that a gastroenterologist looked at me and said, “I think I know what’s wrong with you.” Only people who have waited years for a diagnosis know what a blessing it is to finally hear those words.

I don’t know exactly how my mother felt all those years that she looked at me, knowing something was wrong, but not knowing what it could be. Of course, my mother turned out to be a celiac herself. I think there was always a kinship between my mom and me because we were both sick with something we couldn’t name and that, in fact, we weren’t always sure was real. I remember one time, in particular, telling her that I didn’t feel well. She asked me what I meant, and when I told her that I didn’t know, I just felt bad, she shook her head knowingly. It was as if we both understood that we didn’t have the language to talk about the ways we could feel our bodies failing us sometimes. She always believed that the sickness that she felt was the same sickness that I felt, and she was right about that.

She was wrong about what the sickness was, though. She’d been told all her adult life that all of her health problems stemmed from low iron levels. No doctor could tell her why she was anemic. Doctors have a word for when they’ve thrown up their hands and can’t figure something out, it’s idiopathic. I recoil from that word every time I hear it or see it written. If a body is malfunctioning, there is always a reason. That’s my opinion anyway. My mother’s anemia turned out to be only a symptom of her illness: celiac disease. The borderline anemia I had experienced from early childhood turned out to have the same cause.

I keep sharing my story because I believe it’s important for people to know what celiac disease can look and feel like. Raising awareness will get more sick people diagnosed. And that is why I found this story from the New York Times Parenting section so compelling. It is the story of actress Casey Wilson and her oldest son, whose depression, lethargy, broken leg, seizure, and apparent autism all turned out to be symptoms of the same underlying problem: celiac disease. The story is both terrifying and hopeful. Casey’s son, then under four years old, was too young to be able to tell his mother that anything was wrong with him, but Casey and her husband kept watching and finally found a doctor who was able to connect the dots and give them those incredible words: “we have a diagnosis.” And though her journey to her son’s diagnosis was something out of a parent’s nightmare, her son has experienced an amazing recovery just by following a gluten-free diet.

If you have a story of diagnosis, for any disease, (particularly one that’s tricky to pin down, like an autoimmune disease) I would encourage you to share it in whatever way you can. You never know who might be listening, watching or reading. Your story may give hope and much-needed information to someone out there who is still struggling with an inexplicable illness.

For those whose lives or loved ones may be affected by celiac disease, there are many outlets for you to find information and to share information, but I would recommend checking out the Celiac Foundation’s website at celiac.org. You can find out information about celiac disease and gluten-free living, sign up to participate in clinical trials (in certain areas of the country), join the iCeliac patient registry, take part in their student ambassador program and even share your story with Congress.

Celiac Disease and Children: Some Things to Keep in Mind

By Rachel Sircy

pic 1I’ve been thinking lately about my daughter, who is four, and about whether or not she may also have celiac disease. I’m sure that those of you out there who are celiacs wonder about passing on your gluten intolerant genes to your children. So, for those out there wondering if you should get your children tested for celiac, here are some facts from the Celiac Foundation’s website about children and celiac disease:

* Children with a first degree relative who is a celiac have a 1 in 10 chance of developing celiac disease. So, it’s not a certainty that your child will develop celiac disease if you have it, but they have a higher chance than someone who doesn’t have a close relative (parent, sibling) with celiac.

* Some children start showing signs at different times than others. The jury is still out on why this happens, but some children will begin to show signs of celiac in late infancy or toddler-hood and some don’t develop symptoms until much later in childhood, even into the late teens or early adulthood. What this means is that even if your child is older and has been consuming gluten for most of his or her life, they can still develop celiac disease.

* Children of different ages are more likely to exhibit different symptoms, but there is some overlap in the signs children manifest when they have celiac. Keep an eye on your child if they have a lot of bloating, gas, constipation or foul-smelling diarrhea, chronic fatigue, irritability and especially if they are very young and are vomiting frequently and have poor growth or failure to thrive. Some rarer or more unusual symptoms which can appear in childhood are frequent mouth sores (I still get these!) and that itchy, blistery skin rash known as dermatitis herpeteformis.

pic 2So, apparently severe celiac disease is not common among children anymore, so the symptoms listed above may not be strong enough to be alarming. However, if you know that your child has a higher risk of celiac disease, just be on the look out for those symptoms listed above. And make sure you check out the Celiac Foundation’s website, they have a wealth of information for you to draw from. Remember, children heal from celiac disease much better than adults do. It’s better to get your child tested earlier rather than later because the sooner you can get them on a gluten free diet, the sooner they can heal.

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!

 

Someone Else’s Burnt Toast

By Rachel Sircy

So does anyone else remember the version of the Pollyanna movie with Hayley Mills in it? That was one of my favorite movies as a kid. They played it all the time on the Disney Channel, and I watched it almost every time it was on. Of course, the part that everyone remembers is when Pollyanna is explaining the “Glad Game” to her aunt. The Glad Game is one that Pollyanna’s poor, missionary father taught her to play when all of her dreams of getting a single doll — something other than the rocks and sticks that are her only playthings — is cruelly dashed by an idiotic person with a cushy, workaday warehouse job. The idiot in the warehouse mistakenly sends a pair of crutches (how does this even happen??) instead of a doll. There is apparently no return policy with whatever company it was that sent the crutches and since Pollyanna’s poor, missionary father spent all their money just trying to get this kid one measly toy, there is nothing for her to do but be glad that she doesn’t have to use the crutches. You play the Glad Game by choosing to find a reason to be glad about all of the horrible mistakes that make your life just a little bit worse.

bread-breakfast-eat-33309.jpgWell, I failed at this game on Saturday. I loved Pollyanna, but I didn’t seem to absorb a single lesson from it. You see, HRH (her royal highness), my four-year-old daughter, woke me up on Saturday much earlier than I’d intended to wake up. Half-asleep, I went to the kitchen to make her some peanut butter toast for breakfast. I grab a toaster – we have two: one that is gluten-free and one that isn’t – and I stick two pieces of whole wheat bread in the slots and press down the lever. Each piece of toast comes out slightly burnt on one side. I think to myself, “that toaster doesn’t usually burn toast.” It wasn’t until I pulled the second piece of toast out of the toaster and began to smear peanut butter across it that I realized my mistake. I had used MY toaster, the gluten-free one. This may not seem like a big deal, but celiacs cannot share toasters with people who eat gluten. I had completely ruined my toaster just by putting two pieces of wheat bread into it. I let out some bear-like growl which must have frightened HRH because she yelled out from the kitchen table, “Mommy, what is wrong with you?!” To which I replied, “Oh, nothing, sugar. Mommy is just in the kitchen destroying her appliances.” It was all a bit melodramatic.

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What was the point of telling you this story? Well, just this: life is hard, and even though I think that blind optimists should be pelted with lemons, it really does make a difference to look on the bright side. I’ve pretty much been a sour troll of a woman for most of my life, but I am slowly learning a lesson that my pastor touched on in his sermon last Sunday: those with chronic illnesses cannot afford a single, negative thought. Really, none of us can. Life is hard for everyone. It’s harder in different ways for different people, but it can be especially difficult for those who have chronic health conditions. So after my little pity party over the ruined toaster, I decided to play the Glad Game. I’m really glad that I didn’t have to eat that burnt toast.

Nailed it.

 

 

 

 

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:

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

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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.

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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!

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.