A Meditation on the Benefits of Celiac Disease

by Rachel Sircy

I have been sick most of my life with various and seemingly unrelated symptoms ravaging my body. I have suffered body aches, severe fatigue, mental fog, mood swings, the inability to gain weight, borderline anemia and so on. No one ever imagined that these varied symptoms were possibly all related. Finally, when I was in my early 20’s and just married, I started to develop terrible gastric problems. Every time I ate I would experience such intense stomach pain that I would have to lay down for a while. It got to the point that I wasn’t able to eat more than about a handful of food at a time. I dreaded going to the doctor for these problems, but my husband put his foot down and told me that I could either go to the doctor on my own, or he would drag me there himself. I was afraid I had an ulcer. My husband was afraid that I had stomach cancer. The symptoms had gotten that bad.

Before I went to the doctor, I prayed a simple prayer: that no matter what the diagnosis, I would not have to be on medicine my entire life. The thought of taking pills every single day was something that I dreaded. I got what I prayed for, but my answered prayer turned out to be much more burdensome than I had expected. Instead of taking one or two pills every day, I would have to completely change my relationship with food, what I ate and how I cooked. For the first few eight months or so after my diagnosis, I lived in a sort of denial. I thought that perhaps I had been misdiagnosed or that perhaps if I prayed hard enough, I would be miraculously healed. I do believe in miracles, but no miracle was in my future. Or, rather, the miracle that I got was not the one that I wanted. I refused to stay on a strict gluten free diet for that first eight months and I even went back to the gastroenterologist to try to talk him into retesting me and seeing if he had been mistaken. I stayed sick and when I went back to the gastroenterologist, he told me that there was no need to retest. The tests, he told me, had come out clear as day. There was no mistake in the diagnosis. He actually looked at me and said that he was sorry that I had celiac disease, but “that’s the way the cookie crumbles.”

I was fairly distraught after that. One night, alone in my room, I knelt down by the bed and cried, begging God to heal me and let me go back to the way of cooking and eating that I had always known. In that moment, crazy as it may sound, I think I heard from God. I didn’t hear an audible voice or anything, but an idea came to my mind so strongly, an idea that was so contrary to everything that I had been thinking and praying, that I knew the idea didn’t originate with me. The idea was something like this: Do I really need to be healed so that I can continue to eat powdered doughnuts and McDonald’s hamburgers? No, the point of this disease would be to serve as a constant physical reminder that it isn’t okay to just fuel my body (or my soul) with easily accessible junk. I was going to have to think about what I ate. I was going to have to put the health of my body before my cravings. Somehow, that night, I understood that this new way of relating to food, would make me a more careful and purposeful person. Not just physically, but mentally, emotionally and spiritually. Each time I drive down the road wondering what I’m going to do for dinner and thinking that my life would be so much easier if I could just pull over for fast food, I am reminded that food is for nourishment. My lifestyle is difficult because I choose nourishment over convenience. It has occurred to me since that night that this is a spiritual discipline as well as a physical one. This gluten free lifestyle is my own personal sacrament. Deuteronomy 30:19 records God’s statement to the Israelites: “[…] I have set before you life and death, blessing and cursing: choose life.”

This blog post was really supposed to be about the possibilities of a cure for celiac disease. Pharmaceutical companies are working even as you read this on drugs that could cure celiacs via immunotherapy drugs or protect celiacs from gluten contamination by creating drugs that isolate gliadin (the protein that causes the violent auto-immune response in celiacs) and making it undigestible. At first, I thought that anything that could cure celiac disease would be a welcome answer to prayer, but as I began to write, I realized that my prayer was answered years ago. Choosing life is never an easy decision, but it is one that is well worth it. Almost 10 years into my diagnosis I am a healthier person all the way around. I’m not saying that everyone should avoid these drugs or therapies if they ever become available. By all means, if you can become healthier through better science, I say that is a good thing. But as for me, I think I will continue to do things the hard way, choosing to remember that the ability to deny myself means that I am not a slave to my cravings. There is a great freedom in self-discipline.

Just something to think about…

Gluten-Free Traveling

By: Rachel Sircy                 

My last post was about some ways that you can stay gluten-free in an emergency. This post is going to be about a few things that I tend to do when I am traveling to help make sure that I don’t get contaminated.

Be Prepared: This is something that people will always tell you when you’re traveling anywhere whether you’re gluten-free or not. The thing is, when you have a severe allergy or intolerance, you really do have to be prepared to feed yourself. Never trust that you’ll be able to just find something to eat. Believe me, when I was first diagnosed I made the mistake of thinking that I could just “find something,” on a road trip. Those road trips were horrible and ended in tears. I’m not a person who does well when she’s hungry.

What do I mean by prepared, you might ask. Well…this is a picture of my toaster. It’s not fancy and it cost approximately $7 at Walmart.

This toaster goes where I go. It fits pretty well into the Aldi grocery bag that I use to carry my food for the trip in. If I am staying at a hotel where they serve continental breakfast, I will     sometimes check to see if they have any brands of yogurt that I know are gluten-free and I will perhaps take a banana, but mostly I bring my own bread and peanut butter (or Glutino toaster pastries if I don’t feel like being health conscious) and make my own breakfast in my room.

It’s also a good idea if you’re traveling to an unfamiliar destination to pack easy to eat non-perishable snacks for the trip like food bars (Larabar, Clif Organic Trail Mix Bar, etc) and high    protein snacks like gluten-free nuts and jerky (most flavors of Krave, Oberto All Natural and Epic jerky are gluten-free, but always read the labels because things that contain Teriyaki are usually NOT gluten-free). I’ve also heard of people who travel with cans of tuna and a small can opener and some crackers so that if they find that they have nothing else for dinner, they won’t go hungry. I personally don’t like fish so that doesn’t work for me. The tuna thing probably wouldn’t work on an airplane, but there are travel containers of both peanut butter and hummus. Some bananas, crackers, and vegetables could turn a container of either peanut butter or hummus into a small meal. Remember that it is never a good idea to just wing it when your health is at stake. Don’t allow yourself to get hungry out there on the road or you will be tempted to eat things that will make you sick!

2) Call Ahead: Anytime you’re staying with friends or relatives have a good conversation about what you can and can’t eat and also how your food must be prepared. Lots of well-meaning people don’t know what is or is not contaminated by gluten, so help them out. Make sure Aunt Susie knows that she can’t just pick the croutons out of your salad before she serves it to you and that the kitchen must be thoroughly cleaned after she rolls out pie dough on the counter before she cooks anything for you for dinner.

Once, my husband and I stayed in a bed and breakfast in Charleston and my husband had the foresight to call the owner when we made our reservations and tell him that I had dietary restrictions. He gave us leave to use the kitchen to cook food for ourselves and we also got to talk to the cook about what I could eat for breakfast. During that stay, we met a woman who also had to be gluten-free, but who hadn’t called ahead to let the owner know about it and, unfortunately, she had quite a time trying to eat around all the contaminated food on her plate. So, don’t be afraid to tell people up front about your needs and just let them know (gently) that if they are unable to meet those needs, you won’t be able to stay with them.

3) Try a Gluten-Free Destination: That may sound a bit out there at first, but there are two celiac friendly travel destinations in either direction of Columbia. Charleston is a pretty food-forward city and while the cost of its trendy restaurants may mean that you can’t eat there all the time, many of those restaurants offer gluten-free meals (it is still quite the fad in dieting to be gluten-free). If you travel in the other direction, Asheville, NC has been featured in Delight magazine and, most recently, in Gluten-Free Living as a gluten-free travel destination. I have mentioned before (and I will keep mentioning it) that there is a restaurant in Asheville called Posana that serves exclusively gluten-free food. Not only is their food (and I do mean ALL of their food) gluten-free, but it is also delicious. Seriously, I dream about their fried green tomatoes with pimento cheese sauce and also their lemon blueberry cheesecake sometimes. It is a bit pricey as well, but it is a great place for a special occasion or a treat. These cities are great if you’re looking for a day trip or a weekend getaway.

These are just a few of the things that I have learned from trying to travel and stay safe. Life’s a journey. Travel with a dependable toaster.

Tips for Staying Gluten Free in a Pinch

By: Rachel Sircy

My last post was about how to help those in Houston and Florida who are in need of gluten-free provisions. So, since hurricane season isn’t over yet, l thought I would dedicate this post to tips I have found online for how to stay gluten-free during a crisis. Mostly it means preparing ahead. So, here are 5 things that you can start thinking about or doing right now to make sure that you can be prepared to be gluten-free in a pinch!

  1. If you live in a place where there may be natural disasters (like hurricanes along the coast), it would definitely pay to have a gluten-free food emergency kit with shelf-stable foods such as dried gluten-free cereals, dried and canned meats, fruits and vegetables, and shelf-stable milk and things to drink (you may want more than just water). Remember to also have a supply of your medicines and gluten-free lip balm and toothpaste (you may not be able to purchase these easily after a storm). These kits are very handy especially if you have ever had to be moved to a shelter. Government agencies will feed you, but they don’t usually have gluten-free options available. It would also be a good idea to travel with a kit like this if you are going somewhere where there may be power outages or where you may not be certain to have easy access to gluten-free food.
  2. If you are prone to losing power for days in storms and such-like, consider buying a deep freezer and a propane powered grill. This tip never would have occurred to me, but I read about it on Gluten Free Society’s website. Dr. Osborne (the “Gluten Free Warrior”) said that having these two things saved him and his sons when hurricane Ike hit Houston in 2008. He said that the food in his deep freezer stayed frozen for about a week with no power and with summer temperatures of 90-110 degrees. Be sure not to open the deep freeze unless absolutely necessary and always have a couple of extra propane tanks on hand.
  3. Osborne also recommends having a large supply of nuts in the shell, provided you are not allergic. They are high in good fats and calories – which you may need if gluten-free food is scarce during an emergency – and are apparently shelf stable for 2 years (who knew?). Also, Dr. Osborne points out that if nuts are in their shells, they are less likely to be affected by cross-contamination with gluten, which is a big problem for buying nuts in general.
  4. Of course, gas-powered generators are always a good idea whether or not you are gluten-free, as are: extra cans of gas for the generators, a supply of cash in case you can’t pay for things using electronic methods, books, and board games to keep yourself and your kids entertained without power and a first aid kit.
  5. If you are willing and able to spend a bit more money and save yourself the trouble of getting together different shelf-stable foods to make a gluten-free survival kit, you can purchase individual meals from GoPicnic.com. They have meal options that are tailored for those with special dietary needs. You can choose from gluten-free, dairy-free, vegan, etc.

We all hope that none of us will ever have to face a disaster, but it always helps to be prepared. In my next post, I’ll talk about traveling while gluten-free, what to bring with you, and what to watch out for.

If you have further questions about being gluten-free in a pinch, check out these websites where I got most of my information for today’s post:

https://www.glutenfreesociety.org/staying-gluten-free-during-a-natural-disaster

https://www.verywell.com/gluten-free-disaster-prep-562663

http://gopicnic.com

http://celiacmama.com/2017/09/gluten-free-hurricane-preparedness

Hurricane Relief for Celiacs

By: Rachel Sircy

Instead of writing a long blog post this week musing on how we can live gluten free in Columbia, I am going to be thankful that I am not living in Houston or Florida. Those who have been affected by hurricanes Harvey and Irma are relying on food shelters to feed themselves during these trying times of recovery. However, for those in disaster areas who happen to be celiacs or who have non-celiac gluten sensitivity, food shelters may not have food that they can eat. Below, I am simply going to share some websites of gluten-free cooperatives who are working to get gluten free-food to people who are in need. They list the kinds of gluten-free foods that shelters in Houston and San Antonio are looking for and, at least in the case of the National Celiac Association, they offer a way for people to donate money online through their website.

www.glutenfreewatchdog.org/new/sending-gluten-free-food-to-folks-impacted-by-hurricane-harvey

https://glutenfreeworks.com/blog/2017/08/31/devastated-by-hurricane-harvey-houston-needs-gluten -free-donations

www.nationalceliac.org/help-for-houston

So far, there are no updates on the needs for hurricane victims in Florida. I am going to continue checking these websites to see when they have information on how to help.

Something to Chew On

By: Rachel Sircy

My last post was on the dangers of eating out at restaurants that serve gluten free food, but don’t have gluten free kitchens. I thought I would follow up on that by offering my opinion about certain gluten free products that are sort of in the same boat.

Anytime a person with an allergy or food intolerance purchases a product made by a company that makes a wide variety of products, or that attempts to appeal to a broad base of customers, the person with the allergy is taking a risk. Unfortunately for those of us with issues, there are more people out there who aren’t allergic to peanuts or who aren’t lactose intolerant or who don’t have celiac disease. These healthier customers are usually going to win out with most big companies because they are going to be making up a larger part of that company’s revenue than sickies like us.

Now, that being said, many large food corporations are realizing that the number of people with food intolerances and allergies is on the rise and that it is in their best interest to start making a niche for us or they’re going to lose a large portion of paying customers. BUT, people with serious conditions should not feel indebted to these companies for noticing us. It’s not personal, it’s business.

One thing that I’ve had to learn over the years is that as ecstatic as I am whenever I see a food product that I used to love that has suddenly “gone gluten free,” I shouldn’t feel as if the big-name company that produces that product was really interested in my well-being when they made it. I’ll admit, it does give me the warm fuzzies when I see my childhood favorite cereals like Lucky Charms and Cheerios are now gluten free. I sometimes catch myself thinking: “Wow, General Mills really cares that I’m happy. They’re giving me back a piece of my childhood.” And, of course, they are giving me back a piece of my childhood, for a price. So, write letters to the company if something makes you sick or if you are not satisfied with the way that the company is handling safety issues.

And of course, you have pay attention and learn whether a company’s safety policies are up to your standards, so read, read, read. Be picky, be demanding and don’t feel bad about it. Allergen free products are just a matter of money to most large corporations. The stakes are a bit higher for those of us with dietary issues. For us, allergen free food is about our quality of life. Don’t forget, the hardest punch you can throw is with your dollar.

I don’t mean to sound too cynical, but when you have a real issue with your health, you cannot afford to let excitement or nostalgia cloud your judgement. What I’m trying to get across here is that it is expensive – sometimes it’s really, REALLY expensive – for these companies to accommodate those of us with special dietary needs and since the regular customer base (I mean those with no dietary restrictions) don’t want the cost of the products that they’re used to buying to go up, it only makes sense that some companies might cut corners in order to still make a profit. That means that they might not test these products for allergens as rigorously as they should, or it might mean that they are producing these products in the same facilities as the gluten, dairy or nuts that you may have a problem with. Cross-contamination can happen at any stage of the process and it will still make you sick. (By the way, this includes your own home, so watch out!) I’m not saying that any of these companies definitely do cut corners, only that they might. We can’t be 100% sure. It’s always a little bit safer to go with a product that has a written guarantee on the side like this:

Labels like those generally come on specialty products that are a bit more expensive than the products that are more widely available and are marketed to a broader customer base. But, in the end, I’ve found that I’m willing to pay a bit more for certain products just to have that peace of mind about my health. Plus, I’m happy to help support smaller companies that have made efforts from the beginning to create food that is safe and healthy for all of us.

Let me finish by saying that I, too, purchase gluten free products from famous brand companies, sometimes. But, when I do, I try to make sure that I am keeping track of how I feel after I eat them. Keeping a food journal is a really good idea, especially if you have a food intolerance instead of an allergy. Food intolerances are much slower to affect the body. Sometimes you won’t feel bad until 2 or 3 days after eating something contaminated, so it’s best if you have a written record that you can look at. Record both what you ate and your symptoms even if your symptoms don’t seem related to anything you ate. Eventually you will start to see patterns in your diet and your overall health.

Hopefully this was helpful and gave you something to chew on for a while!

Dining Reminders and Suggestions for the Gluten Intolerant

By: Rachel Sircy

Just a reminder to those with a severe gluten intolerance: dining out is dangerous! Now, I don’t mean to say that you can never dine out if you have a severe gluten intolerance or celiac disease, but don’t forget that when you go out to eat, you’re heading out to a virtual minefield of wheat, rye and barley.

It’s been in the news recently that large pizza chains Papa John’s and Dominoes have started to offer gluten free pizza crusts that they warn customers are not for the really gluten intolerant. When I first read the article on these chains, I could only think of all of the warnings that I’ve read on restaurant menus and food packages – warnings that sound like this: “Customers with gluten sensitivities should exercise caution when consuming menu items labeled ‘gluten free.’”  This is pretty much exactly the warning that is printed on the Papa John’s menu.

I will confess to you, I have ignored such warnings for years. I don’t suggest following in my footsteps. I have made myself very sick on a number of occasions. Sometimes, the day after I eat out, I am stuck laying on the couch wishing I had had enough self-control to turn down dangerous food items. But, what’s worse is that a person with celiac disease cannot count on symptoms to tell them when their body has been damaged by gluten. Many times a celiac’s intestinal wall has suffered damage and their body is racked with inflammation and yet the person will feel absolutely nothing. There are no symptoms present in many cases of accidental gluten consumption for celiac patients. So, don’t let your feelings be your guide. Don’t be afraid to be that pesky person in a restaurant who asks questions and who sends menu items back. And don’t ignore the warning signs posted by the restaurant – they are there for a reason!

Unfortunately, many restaurants are trying to respond to the rising demand for gluten free food without considering why people really want to eat gluten free. I’ve said several times on this blog that following a gluten free diet is not necessarily healthy for a person who doesn’t have a gluten intolerance, but that is not exactly the popular opinion. People who don’t need to be gluten free are seeking out restaurants and stores that provide gluten free products. They will go where they can find these products, and they will pay a higher price to get them. These are the customers that Dominoes and Papa Johns are trying to reach out to. So, don’t be surprised when you go to a food joint all excited about their new gluten free menu item and find out that it’s not made for you. Those of us with real dietary needs are still on the back burner at most restaurants, so to speak. There are always exceptions to prove the rule, though. Chick Fil A apparently has gluten free sandwich buns that come in their own sealed packages so they cannot be contaminated by crumbs from other sandwich buns. Each customer has to assemble her own sandwich, which seems fairly safe, but remember the buns are not the only part of the sandwich that may have become contaminated with gluten; the chicken, lettuce and tomatoes are all suspect. Starbucks also has a gluten free breakfast sandwich that I feel pretty confident eating because the whole thing is assembled first and packaged in its own sealed plastic package. It is microwaved in that package, which is never opened in the store itself. So, there are a few options out there, but none of them are ever going to be as safe as the food you prepare for yourself.

We do have some hope, however. There may come a time in the future when gluten free restaurants may become popular enough to open up chains. For right now, there is only one restaurant that I can think of that is totally and completely gluten free and that is Posana in Asheville, NC. This restaurant is one I can recommend without any reservations (insert comedic drum roll) as every item on their menu is gluten free. They don’t serve anything that isn’t gluten free and so there is no risk of cross contamination. The food doesn’t come at fast food prices, so I might suggest that you save it for a special occasion, but it is worth it. When I went there, I had the fried green tomatoes with pimento cheese as an appetizer and I still dream about them. Yum. Their menu items are seasonal, but I’ve had their lemon-blueberry cheesecake and it’s to die for as well. If you’re gluten intolerant and you want a place where you can feel totally safe and where everything is made for you, then I would suggest making a trip to Asheville and pigging out at Posana.

If you’re really interested in Posana (it’s great food whether you’re gluten intolerant or not), check out their website: https://posanarestaurant.com.

Kids and Celiac Disease

 By: Rachel Sircy

Disclaimer: Our bloggers are not health experts. Contact your physician if you have questions about celiac disease or if you are thinking about starting a new dietary program.

Those affected by celiac disease may wonder what the risk is for our children. Here are a few things to consider:

1) According to the Center for Celiac Disease at the Children’s Hospital in Philadelphia, children with a first degree relative (mom, dad, sibling) who have celiac disease should be tested. They recommend that a blood test for celiac disease be done after the age of three and after the child has been exposed to gluten for at least one year. Remember that if you don’t have gluten in your system, you can’t have a reaction to it. The tests for celiac disease are trying to measure an immune response to gluten. If you’ve already put your child on a gluten-free diet, your child’s test will be negative even if they have celiac disease.

2) Even if you have celiac disease, or your child has another first degree relative with CD, it does not necessarily mean that your child will have celiac disease, though they are more at risk to have the disease.  Some people (myself included) have wondered if it’s worth it to introduce gluten into the diet of an at-risk child. It’s really your call, but consider this: your child may one day want to get off of the gluten free bandwagon. It might be good to find out sooner rather than later if that is an option for them.

Also, there are other health issues that are associated with celiac disease. If your child goes undiagnosed for CD, they may still develop some of these other issues such as diabetes, lactose intolerance, or even coronary artery disease. If you choose to put your child on a gluten free diet without having them diagnosed, just keep in mind that doctors will not be looking out for any medical problems that are related to celiac disease.

3) In young children with celiac disease, you may have to watch for contamination from gluten-containing play things like play dough or chalk, etc. Normally, celiacs don’t have to worry about anything that merely touches the skin (gluten can only affect celiacs if they eat it).  However, since young children are prone to eating things they shouldn’t (like play dough, chalk, etc.), it might be a good idea to stock GF art supplies

4) Signs and symptoms of celiac disease in children (and adults) include the following: chronic diarrhea or chronic constipation; abdominal pain; vomiting; bloating/gas; fatigue; damaged or discolored tooth enamel; blistery, itchy skin rashes; iron deficiency anemia; short stature. According to everything I’ve read, irritability is the first sign that appears in young children. Consistently cranky children are often sick children. Asymptomatic children with genetic risk factors should also be tested because many celiacs do not show any signs of the disease in its early stages.

**All of the above information info was taken from the “Kid Central” page of BeyondCeliac.org, which is a pretty good resource. Also helpful is the Mayo Clinic website.

Recipe: Easiest. Cookies. Ever. (Flourless Peanut Butter Kiss Cookies)

Ingredients:

  • 1 cup peanut butter (smooth works best, but crunchy will do)
  • 1 cup granulated white sugar
  • 1 tsp. baking powder
  • 1 egg
  • 1 bag Hershey’s Kisses (dark chocolate are our favorites on this, but milk chocolate is also good)

Directions:

  1. Unwrap Kisses and place in fridge, and preheat oven to 350 degrees.
  2. Cream peanut butter and sugar into a bowl.
  3. Beat in baking powder.
  4. Add egg and mix until well combined.
  5. Roll into balls (smaller is better), roll balls in white sugar, and place on cookie sheets covered with parchment paper. Press/flatten balls with fork.
  6. Bake 10 minutes, let rest 5 minutes on baking sheet, then cool on a plate.
  7. While cookies are still warm, press a kiss in the middle of each cookie.
  8. Try not to eat them all in one sitting.