Note from Alice
Dealing with the Emotional Stress of Celiac Disease
As time goes on, people diagnosed with celiac disease start to get the hang of the gluten-free diet. We begin to venture out again, going to restaurants and parties. On the surface, it might look as though we’re totally confident in our ability to stay gluten-free. Once we step out of the home, it becomes more difficult to avoid gluten, as our medically necessary diet needs are partially in the hands of others.
Emotionally, it’s not easy to handle the constant concern that the next thing you put in your mouth is going to cause a damaging immune response. No matter how comfortable we get, there’s always an undertone making us wonder if we’re really eating a gluten-free meal. It’s enough to make even the most confident among us anxious, worried and maybe even a little resentful.
When we start to feel the fear of food creep up, it’s easy to want to shut down and avoid the situation altogether. We start to isolate ourselves from social situations. That tactic will probably keep us safe from gluten exposure, but what does that do for our mental and emotional health, including the relationships we have with ourselves and others? How do we bridge the gap between real, justifiable fear and not living the way we want?
The answer lies in mental health exercises. There is a mental health model called cognitive behavioral therapy (CBT). It is a way to help people change unhelpful thinking and behavior. There is a practice that goes hand-in-hand with this type of therapy. It’s called the IDEAL technique. With this technique, people identify, define, explore, act and look back.
How does this connect to emotionally dealing with celiac disease? By putting this idea into practice, you can put your energy into solving the problem, rather than only worrying. The winter 2016 edition of Allergic Living magazine featured the cover story, “Taming the Allergy Anxiety,” which included a chart from Linda Herbert, PhD. The chart broke down IDEAL as:
“First, identify all aspects of the problem. Second, define each aspect of the problem, including the perspectives and goals for everyone involved. Third, explore are possible solutions – even ones you don’t think will work. Fourth, act on the solution. And fifth, look back and reflect on the results. Try another solution if needed.”
Let’s put it into practice. Pretend you are going to a restaurant and you cannot get out of going because it is an important family occasion, like a wedding or birthday, and you want to be there to show your love and support. You didn’t get to pick the restaurant, so you are rightfully worried about their ability to feed you safely.
- Identify what the potential problems are: Maybe you don’t want your menu ordering to turn into a conversation about your health, or perhaps you don’t want to be embarrassed about taking the time to ask the waiter questions.
- Define each emotional aspect of the problem: Are you feeling nervous because you don’t want to speak up in front of others? Do you feel like a burden or an inconvenience? Are you just tired of having to talk about your gluten-free needs?
- Explore your options: Could you discreetly pull the waiter aside? Is it safest to stick to a dish with a simpler recipe and fewer ingredients? Would calling ahead help alleviate feelings of embarrassment or fear?
- Act: Choose the option that seems most appropriate for the scenario and commit to doing it.
- Look back: Think about your experience. What went well? What didn’t? Use this insight next time you explore your options in a similar scenario.
Can our fears of eating out be squashed through 5 easy steps? Perhaps, with some practice. At the very least, it can help you to make the best decisions for yourself and eventually find the way that works best for you in a given situation. Keep practicing various techniques to help you deal with your fears and emotions. Don’t be afraid to seek professional guidance if you need it. It can be so beneficial!
Be sure to check out the February social media campaign, What’s Your Celiac-itude? This quiz will help you navigate various situations based on your key personality traits. Check it out below!
To living better, longer,
CEO of Beyond Celiac
Cooking with Oonagh
Happy Chinese New Year
The Chinese New Year is on Monday, February 8. One of the things I miss with being gluten-free is safe Asian restaurant meals. Add in that so many of these restaurants have staff that aren't native English speakers, and it all gets too difficult. Locally, my Pacific Fusion restaurant can make me safe stir fry but I still miss fried spring rolls, crab Rangoon and battered fried shrimp. You can make them at home – I do – but I hate the smell of cooking oil. So, instead of Valentine’s recipes for February, I thought you would enjoy some old favorites.
CHINESE STYLE CRAB AND SWEET CORN SOUP
This is very mild tasting. My husband describes it as delicate and elegant and it tastes the same as the soup we used to drink in a local Chinese restaurant.
MANGO AND CRYSTALLIZED GINGER ALMOND CAKE
This is a recipe I have made for many years as my raspberry almond tart, and is one of my son's favorites, so it is almost the first recipe I adapted to be gluten-free. I can still eat butter, but my son and cousin and many of you are dairy-free. I have been using more and more coconut oil as a butter substitute and prefer it. Plus, even if you can eat butter, coconut oil is cholesterol-free.
About Chef Oonagh Williams
Chef Oonagh Williams has a culinary arts degree, celiac disease and other food allergies. She spends her time speaking and writing nationally on food for gluten-free and other food allergy diets. Recently, she advised three celebrity chefs in Boston. Chef Oonagh has a gluten-free demo and talk at Merrimack Library on March 3 March and will be at the Health and Wellness Fair on May 14. This is the link to the Beyond Celiac January recipe for sweet potato and slightly spicy soup she made on New Hampshire’s ABC station.
Like her at Gluten Free Cooking with Oonagh on Facebook where she posts recipes, links to her New Hampshire ABC appearances and products she's found and tasted. Connect with her on Skype for help in following food allergy diet. Locally, she teaches healthier food cooking classes for everyone, as most real food is naturally gluten-free and free of many other allergens.
Allergic Living Sneak Peek: Protein Linked to Celiac Disease May Also Be a Mark of Gluten Sensitivity, Study Says
By Jason Rehel
Zonulin, a protein discovered in 2000 that regulates the permeability of the intestine, and which has already been linked to celiac disease, may also play a role in non-celiac gluten sensitivity (NCGS) and irritable bowel syndrome (IBS), a new Italian study has found.
“We were intrigued to find that blood levels of zonulin were almost as high in patients with NCGS as in those with celiac disease,” said Giovanni Barbara, a professor at University of Bologna, in a news release.
The protein zonulin has been at the center of drug development research in recent years, particularly aiming at controlling and inhibiting the protein’s effects on the intestinal walls. One of the drugs in development, larazotide acetate, works by inhibiting zonulin from increasing the permeability of the intestine, thus stopping the flow of gluten into the body. In turn, this can help reduce inflammation, gastrointestinal and other celiac disease symptoms.
Photo credit: Allergic Living & Thinkstock
Are You Getting the Follow-Up Care You Need?
In a survey of 2,850 Beyond Celiac community members, one-third of participants reported they have not been under the care of a physician for celiac disease in the past five years. Nearly 60% of these respondents struggle with at least one other autoimmune disease in addition to celiac disease. Beyond Celiac will submit a thorough analysis of the survey data and needs of people with celiac disease for publication in 2016.
If you have not seen a doctor for follow-up care, Beyond Celiac urges you to do so. For the sake of your health, you should be monitored every year.
Resource Spotlight: Seriously, Celiac Disease & the Talk. Tell. Test. Campaign
There’s a right way and a wrong way to talk to your family about celiac disease testing. Beyond Celiac conducted research to see what holds family members back from getting tested. What we found shaped our public service announcement, Seriously, Celiac Disease, and the Dos and Don’ts Guide for talking to your relatives.
In short, you should have a one-on-one, in-person, serious conversation with your biological relatives. Our research found that sharing information over the internet about their risks can actually prevent them from taking action and getting tested.
Talk to them. Tell them the facts. Urge them to test. We can show you how.
Research Opportunities in the Boston Area
Here’s your chance to get involved and help to advance the field of celiac disease.
Do You Have Gastrointestinal Symptoms?
The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) is conducting a study for people who still have stomach symptoms.
If you still have gastrointestinal symptoms despite being on a gluten-free diet, you may be eligible for a study to evaluate whether taking digestive enzyme supplements can help reduce persistent gastrointestinal symptoms.
If you are interested in learning more, please contact the Celiac Center at BIDMC at firstname.lastname@example.org or call 617-667-8397.
Brain Fog Study: Do You Have Celiac Disease? Are You on a Gluten-Free Diet?
The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) is conducting a research study on "brain fog."
If you experience "brain fog," i.e. difficulty concentrating, thinking or remembering after exposure to gluten, you may be eligible for a study to determine why some people experience cognitive symptoms with gluten exposure.
If you are interested in learning more, please contact The Celiac Center at BIDMC at email@example.com or call 617-667-8397.
Get research news and updates delivered right to your inbox.
What’s Your Celiac-itude?
We all handle problems and concerns differently. That means there is no one-size-fits-all solution for tackling the various challenges of living with celiac disease. Some people feel comfortable speaking up about their disease and their needs, while others prefer not to draw attention to their gluten-free diets. Whether you are completely comfortable with voicing your concerns or not, we have tips and advice to get you through common scenarios.
To help, we recruited Monique Germone, PhD of the University of Colorado School of Medicine to give advice based on her experiences in working with people living with celiac disease. First, take the Celiac Disease Personality Quiz. Select the answers to the questions in the quiz to tell us what you are most likely to do in the given situation. Then, Dr. Germone will give her advice tailored to your comfort level in talking about your celiac disease needs.
Thanks to Boar’s Head for sponsoring this campaign!
Meet the Patient and Family Advisory Council
People living with celiac disease and their families are at the heart of everything we do at Beyond Celiac. Last year, we started the Patient and Family Advisory Council (PFAC) to help guide our work and make sure we are meeting the needs of the community.
Each month, we’ll introduce you to members of the PFAC so you can learn more about people just like you who help to drive our work.
Meet Stephen Roberts
What is your relationship to celiac disease?
I was diagnosed in late 2009, but my symptoms appeared at least 10 years before my diagnosis. I am learning as much as I can about food and food ingredients so I can make smarter decisions about food purchases, eating at home, and eating at friends’ homes or restaurants. I ask questions. I scour corporate food and restaurant websites for gluten-free information, and, if necessary, I call the businesses directly.
Can you tell us a little bit about your path to diagnosis?
While being treated for my type 1 diabetes, my endocrinologist noticed my alkaline phosphatase (ALP) test levels were high. The doctor ran tests on my bone health but found no explanation to my high ALP levels. He then ran a simple vitamin D test at the suggestion of my wife, a registered dietitian. My vitamin D levels were below normal, and remained low even after six months of increasing levels of vitamin D3. My doctor, for the first time, suspected celiac disease. He ordered an antibody blood test and later a biopsy to confirm that I did have celiac disease.
Can you talk about your life after diagnosis and your experiences living with celiac disease?
After my diagnosis, I immediately began to learn how to follow a gluten-free diet. I learned to read food labels at the grocery store, understand cross-contact issues, and ask appropriate questions to wait staff when eating out. Learning about these things empowered me to feel confident in almost any situation.
Meet Candice Graciano
What is your relationship to celiac disease?
I have been diagnosed with celiac disease since February 21, 2011
Can you tell us a little bit about your path to diagnosis?
I started not to feel well in 2010. I often was very exhausted and I had rashes and dry skin patches. I saw a doctor for the exhaustion and he prescribed anti-narcolepsy pills. I saw a dermatologist for the rash, and he prescribed some cream. I had pins and needles and numbing, so the doctor thought I had nerve damage!
The exhaustion and rashes did not go away and, by late 2015, I was so tired and out of breath all of the time that I could not make it up the second flight of my house without feeling lightheaded. Then the pains started - stomach pains, gas pains, pains in my back, my joints, fingers, etc. I honestly was trying to figure out what the issue was on my own, thinking it was something I was eating, but what? One afternoon, I went to use the restroom and noticed there was blood when there definitely should not have been.
I went to a new doctor who was very concerned from the start and began to run a battery of tests. When my vitamin levels came back, she was in shock and told me I was malnourished and severely anemic. Shortly after the results came in, she sent me to a gastroenterologist who said just from my symptoms he felt I had celiac disease, but needed to do blood work and have a follow-up endoscopy. Within a week of that appointment, I was officially diagnosed with celiac disease.
I feel lucky because my journey to diagnosis was only a few short months compared with some who go years without knowing what is wrong. My experience could have been a lot shorter if I had been more vigilant about seeing doctors and not waiting until something like bleeding occurred.
Can you talk about your life after diagnosis and your experiences living with celiac disease, both the successes and the struggles?
Successes: Life after my diagnosis was so much better! After about two weeks, I started to feel my energy come back. I could stay awake past six p.m., the aches and pains were disappearing and the rashes were clearing up. One of the greatest things was to feel the brain fog being lifted. I really felt like a new person, and I kept thinking “this is life; this is how I should feel.” I was able to start working out again and I felt I was regaining my happiness.
Struggles: I am lucky that my family and friends have always been very understanding and supportive, so I never felt a struggle there. However, I do love to go out to eat. At first it was very frustrating and some days it left me feeling sad to navigate what I could not eat, having to say goodbye to my favorite pizza or Italian restaurant, worrying about cross-contact, feeling alienated at parties and gatherings. There was also the process of learning how to read labels. There were a few cross-contact incidents until I learned what I should be looking for and how to read labels properly.
FDA Wants Your Views on their Ruling on Hydrolyzed and Fermented Foods
Hydrolyzed and fermented foods are a common source of confusion for people with celiac disease. Learn about the issue and how to voice your opinion.
Gearing Up for the Big Game
Are you ready for some football? Get ready for the Big Game with these football-inspired gluten-free recipes:
Would you rather skip the cooking and get right to the snacks? Then be sure to check out Feel Good Foods. Their gluten-free freezer foods are perfect for heating and enjoying right before the game: Vegetable Dumplings, Chick Dumplings, Pork Dumplings, Chicken & Vegetable Egg Rolls, Shrimp & Vegetable Egg Rolls, and Vegetable Egg Rolls. Check out the review of these products on the Beyond Celiac blog, Gluten-Free Hot Products.
Ask Sophia: Getting Through the Winter
By Beyond Celiac Volunteer Sophia Kagan, age 12
Winter can be tough to get through, even for kids! It gets dark early and we naturally start to feel tired. We don’t want to get glutened on top of it! Here are four things to look out for when you have celiac disease, especially in the winter.
- We know that we can’t just share food with our classmates. Their lunch and snacks might have gluten! The same goes for anything you'd put on or in your mouth. If your throat is feeling scratchy, be careful before you take a throat lozenge from your friends. These could have gluten in them and make you sick!
- Gluten hides in crazy places. It’s good to take your vitamins to stay strong, but even some gummy vitamins may have gluten. Make sure you and your parents are reading every label.
- If you have a cold, chicken noodle soup might be just what the doctor ordered. Be careful. Some chicken soups can make you even sicker! Lots of canned chicken soups aren’t safe for people with celiac disease. Keep checking those labels and ask your parents if you have questions about ingredients.
- Chapped lips can also be a problem in the winter, and lip balm is the answer. Even though you don't eat it, you still need to read labels to make sure it's gluten-free. Because it's so close to your mouth, you accidentally might swallow some, and it can make you sick if it's not gluten-free. The same goes for any product that might come in contact with your mouth.
This may sound like there is no way to stay safe, but don't worry. You'll get the hang of reading labels and just being extra careful. When in doubt, go without!
Until next time!
GREAT Continues at the University of Nebraska – Lincoln
The Lincoln campus of the University of Nebraska (UNL) completed its second round of the GREAT Schools, Colleges and Camps online gluten-free training program from Beyond Celiac. One of the first universities to go through the training, UNL has proven that the health and well-being of their gluten-free students is a top priority.
Beyond Celiac Director of GREAT Kitchens Beckee Moreland hosted an onsite training session in early January with 85 employees from all six dining halls at the university in attendance. This training session served as a refresher for seasoned employees and as a way to get new staff up-to-speed on safely serving gluten-free food. UNL is currently revamping their services so they can offer more convenient options for their students, like stocking food stations, grab-n-go options, and making sure gluten-free options are available at campus events. From taking the GREAT training course, UNL also has become allergen-conscious, in addition to offering gluten-free food.
“UNL is a GREAT example of a school that’s doing it right,” said Moreland. “Their commitment to training and safety helps make the transition to the college lifestyle easier and less stressful for parents and gluten-free students alike.”
Moreland encourages students and parents to talk to their schools about GREAT Schools training, which is a relatively inexpensive, yet comprehensive program. For more information, visit www.beyondceliac.org/great-gluten-free-foodservice-training.
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