Good News and Encouragement for Gluten Sensitive People

By Rachel Sircy

Well, 2020 may be the best year we gluten sensitive people have had yet. According to an email I recently received from Celiac Foundation CEO Marilyn Geller, President Trump has passed a budget resolution which directs the National Institutes of Health to devote resources to researching the underlying cause of celiac disease and to work toward finding a cure. 

This means that those suffering with celiac and gluten intolerance are finally being taken seriously! We may soon have answers to all of our unanswered questions about why we’re gluten intolerant in the first place. And, best of all, we may soon see a cure!! 

If you are new to gluten free living, the good news is that things should soon be changing for the better. Celiac disease itself may one day be a thing of the past. 

With all of that in mind, I’m heading into the new year with renewed energy and hope for the future. I hope this is encouraging to all of you reading out there as well. God bless and Happy New Year!

Holiday Reminders for Gluten Free Eaters

By Rachel Sircy

‘Tis the season for eating other people’s cooking. Unfortunately, eating with family and friends poses special challenges for those with dietary restrictions. There are a few tricks, however, that can make the holiday get-togethers more manageable.

First, talk to the host of the party beforehand!

It’s important to make your needs known well ahead of time so your host can coordinate with everyone who may be bringing a dish. It also helps to be as specific as possible. It’s tempting to want to avoid imposition, but, believe me, your fellow partygoers will feel worse if they end up making you sick.

Second, always offer to bring a dish or two of your own, so you will have something that you know is safe to eat.

I have often run into well-meaning family members who think they’re making something gluten free but end up adding gluten through an ingredient they never thought to check. There is nothing quite as frustrating as standing in front of a table stacked high with delicious food that all happens to be off limits to you. This is especially important for parents whose children have dietary restrictions. It’s difficult for adults to people eat off limits food in front of them, imagine the way a child would feel. Make sure you have safe treats for your kids!

Finally, if you absolutely can’t bring anything or speak to the host ahead of time, make sure to eat before you go.

The motto of a longtime gluten free eater is, “Never show up hungry!” Make what you’d like to eat at home and show up full, so you’re not tempted to grab anything off of the dessert table. I always think it’s a good idea to hit up the health food store for some favorite gluten free snacks and bars to keep in my car or purse. I try never to go anywhere without food, especially when I know there will be lots of delicious temptations where I’m going.

Happy holidays and safe eating everyone!

 

Every Story Counts

By Rachel Sircy

I 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.

Faith-Based Alternatives to Trick-or-Treating

By Rachel Sircy

I believe I mentioned in my last post (the one about gluten-free trick or treating) that my family and I don’t actually celebrate Halloween. I’ve never made a big deal about this before because I honestly didn’t know anyone outside of my own church who abstained from Halloween celebrations. Last week, however, I was talking to the mom of my daughter’s school friend who asked me if I had any good ideas for Halloween alternatives for small children. This was the first time since I’d moved to Columbia that anyone had asked me that question, and it made me realize that perhaps there are many of us out there who would like something to do with our kids on October 31^st that doesn’t involve traditional Halloween celebrations.

If you look online, there are tons of ideas for Christian alternatives to Halloween celebrations for parents to do with their kids at home. I read several blogs, each with some great basic ideas that any family can make their own. You can throw a fall-themed costume party for your children on October 31^st and include fun games with candy prizes. One blog suggested doing a treasure hunt (similar to an Easter Egg hunt, I guess) and fill objects with candy. These activities can be religiously themed and designed to teach a faith-filled lesson. One of my favorite ideas was using pumpkin carving to teach a lesson about receiving the Holy Spirit: cleaning out the pumpkin is analogous to what Jesus does to us when we repent and the light that we put inside the pumpkin can represent what happens when Christ puts His Spirit in us. Other sites suggested doing a kid-friendly movie marathon at home, involving popcorn, candy and letting your kids watch fun movies until they fall asleep. These parties can be family-only celebrations or involve neighbors and friends. If you have the luxury of getting out of town, one blogger mom suggested taking your kids on a small weekend trip. Getting out of the house may be a good idea if you’re opposed to handing out candy to trick-or-treaters (personally, I hate telling little kids “no,” so if I stay home, I always plan on handing out some candy. If you’re trying to build your Halloween alternative into a neighborhood party, it might not be a bad idea to hand out candy and spread the word for next year’s party!).

And don’t forget, many area churches put on Halloween alternatives in the form of Fall Festivals or “Hallelujah Nights.” A few I saw online that might be worth looking up near Columbia are Redbank Baptist Church’s Fall Festival night; Family Worship Center’s Hallelujah Night, and Harvest Collaborator’s Hallelujah Praise Night. If your church is having a fall festival or Halloween alternative night, you can feel free to share it in the comments.

Happy holiday alternatives, everyone! 

How to Navigate Trick or Treat Time with a Gluten Free Child

by Rachel Sircy

It’s that (frustrating) time of year again when everyone in the world seems to want to give our kids candy. The thing is, this candy-giving-extravaganza seems to start at Halloween and doesn’t seem to really end until after Easter. Besides the fact that candy is unhealthy and can cause dental problems, diabetes, etc., those of you out there who have celiac or gluten-sensitive children probably dread this time of year because the likelihood that your child will be given something unsafe to eat goes through the roof. Trick-or-Treat has a whole different meaning to those of us who have (or whose children have) food allergies and intolerances. While it may not be possible for every parent to monitor everything that your child is given to eat during this candy-crazed time of year, there are some preventative measures that you can take to ensure that your child is as safe as possible.

The first thing is for you, as a parent to make sure that you know what candies/treats/etc. are safe for your child to eat. You can begin your research here. Once you feel certain that you know what is and is not safe for your child to eat, you can decide how to proceed. My family doesn’t celebrate Halloween, but if yours does and you plan on trick-or-treating, you have several options to try. If your neighborhood has an HOA or a Neighborhood Watch, this might be the place to bring up the fact that your child has a food allergy/intolerance, and to request that your neighbors try to pass out safe candy. Be sure to have a written list prepared for the HOA or Neighborhood Watch to pass out. If you’re in a community where you know your neighbors, you can personally give them a list of the safe treats for your child and ask that they be mindful of what they give your youngster. Another thing to keep in mind in HOA and Neighborhood Watch communities is the possibility of having a different night for allergy sufferers to trick-or-treat on or creating a different neighborhood-wide activity that would be inclusive of everyone. Consider this zany alternative to Halloween trick-or-treating that has been in place in Des Moines, Iowa since the 1940s.

If it’s not possible to pass out a list of safe treats, or if you will be trick or treating in an area where you don’t know the people who’ll be passing out the candy, you can speak to your child ahead of time and let them know that they will have to give you any unsafe candy that they receive. You can then decide what kind of treat you’d like to replace it with, whether you pay them a penny for each piece of unsafe candy or replace the candy with safe choices that you have already stocked at home. You can also take all of the unsafe candy and either find a local business (these are usually dentists, so check with your dental office first) who will buy the candy back from your child, or you can donate the unsafe candy to anyone who was unable to go trick-or-treating.

If you need to have even more control of what your child eats, as in the case of a severe allergy, it may be best to avoid trick-or-treating altogether. To make sure that your child doesn’t feel left out, you can (if time and money allow) throw an allergy-friendly party yourself for your child. If parties aren’t your thing, but you don’t feel it’s safe to allow others to give your child candy, why not try to adapt classic kid-friendly activities, such as Easter egg hunts. Why not do a candy-filled egg hunt in the fall and allow your child to dress in costume? Just remember to keep it fun!

As is the case with all food-allergy sufferers, it’s important that close friends and family understand, in detail, what your child can and cannot be exposed to. Make sure to share this information with your child’s school as well, just in case there are any parents of other children who may want to provide treats to the class, or in case the school has its own trick-or-treat or holiday party.

Safe eating, everyone!

A Word (or Two) About Labels

By Rachel Sircy

This is a subject that I tend to write about quite a bit, but I’m going to devote yet another post to discussing gluten-free food that’s not really gluten-free. I’ve previously written about how even though I’ve been gluten-free for more than a decade, I still have flare-ups and residual symptoms. I’m sure that many sufferers of Celiac Disease out there who have been gluten-free for a while have similar issues. That’s because recent research has found that approximately 70% of sufferers who follow a gluten-free diet are regularly exposed to gluten, either accidentally or intentionally.

Of course, there are always those who have moments of weakness and relapse, but many of the us who ingest gluten do so without our knowledge. The problem is often that gluten-free labels are attached to foods which are not truly gluten-free.

An interesting article I found on GlutenFreeWatchdog.com, cited a recent incident in which a sausage manufacturing company was penalized by the USDA for labeling their pork sausage as gluten-free when it contained soy sauce. Those of us who’ve been gluten-free for a while know the dangers of soy sauce. Yes, there are brands (notably San-J) who do claim to make soy sauce without fermenting their soybeans with wheat. However, most types of soy sauce do contain wheat, including the soy sauce used by this company to make its pork sausage. So, how on earth did this company think it could get away with labeling products gluten-free which were clearly not?

Well, I’ll attempt to avoid summarizing Gluten-Free Watchdog’s entire article, (you can read it here: https://www.glutenfreewatchdog.org/news/when-a-regulatory-agency-usda-actually-enforces-the-gluten-free-labeling-rule-and-recalls-a-product-containing-wheat-based-soy-sauce/) but it’s important to note that the FDA allows products to be labeled gluten-free as long as the gluten in their particular product doesn’t exceed twenty parts per million. That’s twenty parts of gluten per million.

However, someone in the comments section of the GFWD article rightly pointed out that this system of measurement is flawed – and dangerous – for people with serious gluten sensitivities. You see, a company may label a product gluten-free because it has less than 20ppm, but what if a celiac has two servings? Or what if it takes two (supposedly) gluten-free flavor packets to make a recipe? Then, the level deemed “safe” by the FDA has been exceeded.

The real issue, then, as I understand it, is that companies are not really required to state exactly how much gluten is in a product labeled “gluten-free.” So, it’s nearly impossible to judge what is gluten-free and what isn’t.

So, what are we to do in this case? Well, we can try to make the FDA aware of violations to gluten-free labeling. The Gluten-Free Watchdog website is a good place to send anything that seems suspicious. Take a picture of the label and/or give the name of the product and the manufacturer to them via email. They are good about looking into those kinds of things. Also, FoodAllergy.com has an entire article devoted to placing a complaint about a mislabeled product to the FDA. For more information on what to do when you think a product is mislabeled, visit https://www.foodallergy.org/education-awareness/advocacy-resources/what-to-do-when-you-think-a-product-is-mislabeled.

School Lunches, Gluten Free

By Rachel Sircy

Last post I wanted to remind all of us to be mindful of the food allergies that other people might be suffering. It’s important to keep our friends and even our teachers in mind when we pack our lunches because food allergies are becoming extremely prevalent. Now, though, I want to turn my attention to those of us who have to pack gluten free lunches for our little (or not so little) ones. 

My daughter – whose name I don’t divulge on the internet, so I’ll just call her HRH (short for Her Royal Highness) – doesn’t exactly have to be gluten free, but I do. We are homeschooling, but we have a homeschooling co-op where we meet with other parents and students once a week. Because we have this one school day per week (and because I have to attend school with HRH), I have to think about packing my lunch own lunch as well as hers. I also have to think about how to avoid cross-contamination when packing (and unpacking and eating) our food. 

Photo source: https://www.parentmap.com/article/school-lunches-ideas-for-picky-eaters

Now, I’m a person who likes to cook and who believes that there is only one really safe way for celiacs to eat, which is to make whatever you eat yourself. I have only just begun to realize how difficult this truly is when you have to prepare meals that need to be portable and finger-friendly. For those of you who are sending your children to public or private schools, getting your child’s school lunches together must be like trying to prepare for five picnics every week. So, I thought that this week, I’d try to share what I’d learned (and some new ideas, too) about how to do gluten free lunchtime shortcuts. Here are a few: 

1. My first piece of advice is to keep things fresh. Fresh fruit and vegetables are naturally gluten free, and most are finger friendly. I am personally a huge fan of celery, dipped in ranch, soy or sun butter, gluten free guacamole or gf hummus. You can make the hummus or guac yourself at home and then just pack individual servings, but there are also several brands of both guacamole and hummus which are gluten free and some of which come in individual packages. I personally am a big fan of the Aldi brand of guacamole that comes in individual servings. 
2. You can also make sandwich or cracker spreads ahead of time and dish them up in individual servings. Since gluten free bread is hard to eat without toasting it, and since it doesn’t last long after you toast it (it gets this weird, gross chewiness to it that makes you feel like you’re trying to eat rubberized bread), I simply don’t mess with it. Crackers work just fine for most sandwich spreads. Multigrain chips work with pimento cheese, as do Glutino Brand gf bagel chips. I make pretty good chicken salad that is delicious with crackers. I would give you the recipe, except that I don’t use one. I simply boil and shred a couple of boneless skinless chicken breasts and add in chopped green onion, celery, toasted pecans and dried cranberries (Ocean Spray claims that its plain Craisins are gluten free, but beware because the trail mixes, etc., containing Craisins are NOT). I don’t use a whole lot of mayonnaise to bind everything together, but of course, I never use anything other than Duke’s. (P.S. If I take this mix to school, I leave out the toasted pecans.)
3. Don’t forget there are safe gluten free companies out there pre-packaging food for us! I’ve said it before and I’ll say it again, I think Enjoy Life Foods is the best all-around brand for any group get together because they make sure their food is free from the top 8 allergens. So, if your kid likes peanut butter, pack him an Enjoy Life Sunbutter bar. They are gluten and allergen free and I think they’re pretty tasty. 
4. If you’re packing a gluten free and a non-gluten free lunch, make sure that you don’t try to do everything at once. Don’t have gluten free bread or crackers out while you’re making wheat toast or slicing banana bread or something. Crumbs can make a celiac sick, so avoid them at all cost. Pack the gluten free lunch first. And with any spread (like a soy or nut butter spread) mark the spread gluten free before you even open it so that all family members will know that gluten free precautions apply to this particular jar. I keep a sharpie in the kitchen drawer just below the snack cabinet for just such a purpose. (I label all gluten-contaminated jam and nut butter jars “contaminated” so I’ll know not to use them). If my husband and daughter have to use my stuff, they know the drill – Dip out what you want with a clean teaspoon or tablespoon. Seal the jar back up and put it in the cabinet or refrigerator. Then take a knife and spread what’s in the spoon onto your wheat bread. Voila! Gluten free with ease. 

If you would like more variety, let me recommend Beyond Celiac’s webpage for kid-friendly gluten free snacks and appetizers (they also have a few pages dedicated to gf recipes for kids lunches – although frankly, I thought they seemed a bit too grown up for a school age kid). Visit : https://www.beyondceliac.org/gluten-free-recipes-categories/appetizers-snacks+for-kids/

Back To School Allergy Awareness Tips

By Rachel Sircy

It’s that time of year again, when kids and teachers across the state are heading back to school. For an increasing number of parents, the school year is a time when they worry about their child’s health and safety. Our schools are attempting to become safer places by installing metal detectors and having police officers on campus, but what about those kids for whom the danger is ever-present and lurking in the lunchroom?

For those of us with food intolerances, sensitivities and allergies, staying healthy and safe is a constant battle. But there are things that we can do to keep our kids (and let’s not forget those teachers and school staff who may have allergies also!) from coming into contact with the wrong foods. If your child or someone you know has a food allergy which may be flared up at school, DON’T BE PASSIVE! There are steps you can take to help protect your child and everyone at their school.

1. Contact the school and let them know ahead of time who your child is and what kind of food allergy they have. Be prepared to provide a doctor’s note. Let the school know how sensitive your child is to their allergen and then offer advice on how to control the situation at school. Don’t forget to provide the school with your child’s emergency medications, if they take any.
2. While you on the phone with the school, see if they would be willing to promote food allergy awareness through programs like Be a PAL. There are tons of resources to help kids understand what food allergies are and how to help and protect their friends, from pamphlets and worksheets to coloring pages for the littlest learners. They are great classroom resources! Visit: https://www.foodallergy.org/education-awareness/be-a-pal
3. If you and your child don’t have a food allergy, but find out that someone in his or her class does, then try to be mindful when providing snacks for your child and especially when providing treats for the class. Take a few minutes to learn about the allergy and how you can avoid it. Peanuts and nut allergies are extremely common and there are very simple methods for avoiding exposing nut allergy sufferers to their allergens. There are plenty of alternatives to nut butters on the market, including soy butter and sunflower seed butter (Tastewise, I prefer the sunflower seed butter. Enjoy Life Foods has a ton of products, including individually wrapped snack bars made from sunflower seed butter, which I can personally say are quite tasty. I would guarantee your kid won’t know the difference.)
4. Remember, school time isn’t the only time that we need to be mindful of allergy sufferers. Any school function could be a place of exposure. So be sure to pack allergy-friendly snacks and treats for any of your child’s after-school programs, including sports practices and games, dance lessons and recitals, etc.

Those of us who may only have celiac disease and not food allergies are still aware of how hard it can be to feel comfortable and safe in a world filled with stuff we shouldn’t eat. So, let’s be even more careful to stand up for our allergy-suffering friends!  Happy back to school!

Celiac Disease and Children: Some Things to Keep in Mind

By Rachel Sircy

I’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.

So, 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.

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 appreciate 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!