Sure Foods Living – gluten-free and allergen-free living

The other night I went out with a group of people to a new restaurant called Salito’s in Sausalito, California. I hadn’t looked at the menu ahead of time, but rarely do I have a problem eating out gluten-free these days (unless it is a Chinese restaurant). Restaurant awareness has grown tremendously since I was diagnosed with celiac disease 10 years ago, and especially in the last few years. If you haven’t heard of gluten-free by now, you are living under a rock. But after this dining experience, I wondered for the first time if there could actually be a backlash happening in some places.

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I’m in tears as I watch an interview with the amazingly composed father of Jharell Dillard, a teenage boy who died last week from anaphylactic shock after eating a chocolate chip cookie that he didn’t know contained nuts. The cookie was given to him by his aunt by mistake. I feel such pain for this family and fear of losing my own daughter like this. It can happen so fast, and so easily, which is why it is so important to always – always – carry an Epi-Pen. Unfortunately, this boy didn’t have one with him because he was always so careful. As careful as one is, accidents can happen.

As if one death isn’t enough of a reminder, there are two more in recent news.

A 20 year old college student, also in Georgia, died after eating at the dining hall. The full story is here.

A young Bay Area man died just last month after eating a salad that contained nuts. He made the news because he was a key witness in a crime, but hopefully his legacy will be to raise money for food allergy awareness and research, as his friends and family are walking in his honor at the 2011 Food Allergy Walk in San Jose, CA.

I don’t mean to be morbid, but I am still haunted by the horrible story of a 7th grader who died at school in Chicago last December, and the tragedy of BJ Hom, an 18 year old who lost his life while vacationing with his family in Mexico. There is a memorial fundraising run in his honor.

These are reminders to be vigilant about food and to carry medicine at all times, no matter how mild past reactions have been.

Here are some important facts most people probably don’t know about food allergies, according to the Food Allergy and Anaphylaxis Network (FAAN):

• The severity of a person’s allergic reactions to food cannot be predicted from previous reactions. Someone whose reactions have been mild in the past might react more severely during a next episode. A FAAN review of food allergy fatalities found that most of the people had never had a severe allergic reaction until the one that caused their death. Thus, all food allergies must be taken seriously.
• The incidence of peanut and tree nut allergy among children appears to have tripled between 1997 and 2008.
• Even trace amounts of a food allergen can cause a reaction.
• Most people who’ve had an allergic reaction to something they ate thought that it was safe.
• Early administration of epinephrine (adrenaline) is crucial to successfully treating anaphylactic reactions. Epinephrine is available by prescription in a self-injectable device (EpiPen® or Twinject®).
• A study of fatal reactions in children and adolescents found that most occurred at school, and were associated with significant delays in treating with epinephrine.
• There are no significant risks to giving epinephrine even if someone isn’t having an allergic reaction, unless one has a serious heart condition.

Awareness and education of those around us is the key to keeping our children safe!

“It’s all in your head” is the response more than one patient has received from a doctor after hearing about the patient’s health problems. I have heard this story from people who write to me looking for answers, and the fact that a doctor could be so dismissive of one’s health complaints is frustrating and upsetting. Those that write me an email like the one I am sharing below have already taken the steps to find out what is wrong, and have discovered that by cutting out gluten, many if not all of their symptoms have resolved. I wonder how many others end up believing that it is in their heads, that there is no cure for their ailments, no hope to feel better. Gluten can indeed affect the head — with anxiety, depression, migraines, seizures, ADD and OCD, and even schizophrenia, but I doubt that’s what those doctors meant.

Here is an email I received recently:

“I’m sure you’re extremely busy, so I understand if you cannot respond to this email immediately, but I am desperate and would love your advice. I’m 27 years old.  I endured some abuse about a year into my marriage. I’ve been divorced about a year and a half, so my life is in a calm, peaceful place now. My body, on the other hand, has been rebelling. 

I was suffering night sweats, joint pain, belly bloat, terrible gas, and recurrent mouth sores that absolutely cover my mouth making it impossible to eat. I went on a gluten free diet about 8 months ago, and I found relief from almost all of those symptoms. If I go back on wheat, the symptoms return. My doctor tested me for celiac disease and the results came back negative. I had been on a gluten-free diet for quite some time I thought it was possible that could’ve affected the outcome of the blood test, but my doctor refuses to look into the matter any further. She blames my problems on anxiety and post-traumatic stress. I agree that stress is a factor, but is it possible stress sparked the digestive issues? I’ve had problems with IBS, specifically constipation, since the day I was born, and have also been lactose intolerant all my life. So digestive complications are nothing new. 

She acts like it’s all in my mind, which makes me feel so defeated. I don’t know where to go from here, but as someone with so much knowledge on the subject, I would value your advice more that I can tell you.”

In my answer to her, I told her that it is not in her mind, but rather her stomach! I also told her that her doctor sounds dismissive and ignorant and that she on the the other hand, sounds like she knows exactly what is going on. If she feels better off the gluten, that is her proof.

Celiac disease and gluten intolerance can indeed be triggered by stress, although it sounds like she already had symptoms long before. The stress could have turned it up a notch, or due to her radical lifestyle change she may have altered her diet to have more gluten in it, thereby making her symptoms worse.

“Where do I go from here?” she asked at the end of the email. Where do you go from here? You stay gluten-free if you feel better, you tell people you have a gluten intolerance or sensitivity or gluten allergy or whatever you want to call it, and you say it with confidence! It really doesn’t matter what anyone else thinks about it — do what is right for you.

I wish this reader well, and I hope that her email touches someone else out there struggling with the same obstacles. If anyone else has advice for those that are wondering if it’s all in their heads, please add your comments!

Dining out on a gluten-free diet can be challenging because gluten is present in a lot of foods, but something that doesn’t often get addressed with the topic of dining out is what is happening before the gluten-free diner even walks into a restaurant. I’m talking about EMOTIONS.

Our emotions are something that set us, the gluten-free diners, apart from other diners. While other customers are thinking about their dates, or admiring the art on the walls, or taking in the smell of fresh bread as they walk in the door, I’m hoping there’s something at the restaurant I can eat. I’m wondering whether or not this restaurant is going to understand what gluten-free means. If I’m with a group, I’m dreading having to once again explain that I can’t share dishes with everyone.

Gluten-free diners come in to the restaurant with a variety of emotions:

• Anxiety – Will there be something I can eat?,
• Nervousness and Fear – Will I get sick (again)?
• Embarrassment – Will my friends think I’m a pain? Will they say sorry to me every time they eat a bite of something I can’t have?
• Sadness or Anger or Resentment, depending on when they were diagnosed or how well they are dealing with their new diet — Why can’t I enjoy the freedom that everyone else can? Why can’t the restaurant make this easier for me? Why me?
• And let’s not forget Hunger! The hungry gluten-free diner may have to wait even longer if everyone at the table is eating bread. There have been times when I am so hungry that by the time my dinner comes, I eat everything on my plate — and people look at me at the end of the meal as though I’ve eaten so much! They’ve forgotten that they’ve eaten a half a loaf of bread before the meal even started.

All these emotions just to go out to eat! While most people find it easier to go out to eat than cook at home, the gluten-free diner often chooses to stay at home because it is easier than dining out.

Our love of good food and dining and socializing can triumph, however, and when we do find restaurants we trust, restaurants that have a gluten-free menu, and restaurants that understand our needs, we can begin to let go of the anxiety and those other negative emotions, and truly enjoy our food and our entire dining experience. This is what we want restaurants to understand about us: If they can make us feel comfortable and can earn our trust, we will be there and we will be loyal, and we will bring our family and friends too, and we will spread the word.

What emotions do you have when dining out gluten-free?

Our own physical body possesses a wisdom which we who inhabit the body lack.  We give it orders which make no sense. ~Henry Miller

When did we become a society of people who think it’s normal to have discomfort and pain? We take medications for everything, without questioning whether we are really solving the problem or simply masking the symptoms. It seems like the more that people are affected by daily health issues, the less likely we are as a society to figure out what’s really wrong.

For most of my 20s, I suffered from stomach problems. One night in Boston, after I enjoyed some clam chowder, I wound up in a stall of the restaurant’s bathroom clutching my stomach. My friend suggested that I was lactose intolerant. I had not heard that term before. I wasn’t a picky eater – in fact, I enjoyed just about any kind of food, and I had never done any dieting of any kind. This was the first time I considered that there might be something I could not eat. Lactose intolerance made sense because it was fairly common as I was to learn. After all, they sold Lactaid (lactose-free mik) in the stores. My friend was wrong about the lactose intolerance diagnosis, but I believed it for 10 years. My body continued to tell me that something was wrong, but I didn’t listen – lactose intolerance seemed normal so I stuck with that idea, avoiding a lot of dairy and taking Lactaid pills.

To read more about not accepting what’s considered normal, go to my post at Attune Foods.

May is National Celiac Awareness Month, and this month’s Attune Foods theme is “What does gluten-free mean to me?”

For four years I have written articles about celiac disease and gluten sensitivity on this blog. I have told my story and I have shared my emotions. And somehow I still have something to say!

Inspired by my 1^st grader’s homework assignment, I thought I’d take a different approach by writing an acrostic poem (yeah, new word for me too!) about what being gluten-free means to me:

To me, Gluten-Free means…

Getting my life back after years of fatigue, anemia, stomach aches, asthma and more

To read the rest of the poem for the letters L, U, T, E, N, F, R, E, E, visit Attune Foods and tell me what being gluten-free means to you!

I remember the day I sat at my desk at work and received a phone call from my mom. For months I had been suffering with stomach pain during the day. I sometimes had to take walks around the block to try to relieve my bloated belly, or sneak out to my car after lunch to lie down and even fall asleep because I was so tired. I had also been seeing doctors for unexplained anemia and they had given me a bone marrow test with no conclusions.

I didn’t know how worried my mom was until much later, when she told me that she had worried about my health for all of my life. When I was one year old, I had spinal meningitis (the bad kind), then vitiligo, asthma and allergies as a child. Now here I was, her adult child, still worrying her with health problems. Her own experience of losing loved ones to cancer at young ages heightened her fear about what was going on with me.

After an internet search (or many), she called me and told me that I needed to read the information she had just emailed me about celiac disease. She told me that she thought I had it. Neither of us had ever heard of celiac disease. The phone call was quick — she knew that I would need to read the information myself, and within five minutes of reading, I knew that this was the answer.

The day I was diagnosed and had to start a gluten-free diet for the rest of my life, my mom did it with me. Just like that. She did it for herself, for she had suffered too with various unexplained health issues, but she mostly did it for me, and for that I am forever grateful. Though it was a bit like the blind leading the blind, having my mom go through this difficult transition with me was the best thing I could have asked for.

We have come a long way since then. I have followed my passion to help others suffering from the effects of gluten, and my mom has been my biggest supporter, whether it’s reminding me that it’s time for a new article on the blog, sharing ideas for gluten-free cooking, or letting me know about relevant medical news. She, too, wants to help people — she knows what it’s like to be in pain, and then to feel healthy again.

Mom, I owe my good health to you. To other mothers out there … let my mom be a role model to you. Trust your instincts. If someone tells you nothing is wrong with your child, and you know something is not right, trust yourself. If someone tells you that there is no cause, believe that there is. My mom gave me life, and then gave me life again. She will forever be my role model.

I love you, Mom!

I thought she understood. I thought she would say no. But she ate it, at school, when no grown-ups were around. It was a cupcake, given to her by a friend at recess, and she ate not only the frosting, but half of the bottom.

I thought she would have at least told me that she had done it after the fact. Nope. Not a word. So how did I find out? From another mom, whose daughter also was given a cupcake at recess by the same friend. She told her mom that my daughter ate it too. The mom told me, out of concern. I confronted my daughter — at first, she said it was only the frosting, but days later, she admitted that she had eaten part of the cake.

I have to admit, I was shocked. It’s not like she committed a crime, and I didn’t make her feel that she was in trouble for doing it, but I had to initiate the “You could die” talk, to which she responded, “I could die? But I’m only six years old — I have barely even lived a life!” Heavy stuff for a 6 year old. My heart was breaking, but what else am I to do? The fact is that the cupcake could have had nuts in it. Unlikely, but WHAT IF?

I don’t blame anyone — the generous kid didn’t know, the school didn’t see it. It’s the responsibility, albeit a big one, of my daughter to say no. Aside from reminding her about the big shot she would have to get in her leg (to prevent her from dying), I also repeated what I have told her before: that any time she is offered a treat and says no, she gets to have a treat that’s as good as or better when she gets home. I promise. “But it just looked sooo good.” Sigh.

If there is any silver lining to my daughter sneaking a bite of potentially fatal food, it is that she didn’t have a reaction. It didn’t have nuts, but surely the cupcake had egg in it. She had an anaphylactic reaction to an egg last summer, but it was not baked. One study showed that the majority of children with egg allergies (74% in this study) could tolerate heated eggs, baked in a muffin or in a waffle, because the heat reduces the allergenicity of the egg. According to an interview with one of the researching doctors about the study, “past history of anaphylaxis was not an exclusion criterion and we found no difference in rate of anaphylaxis between those who reacted or tolerated baked egg.” So, I’ll be making a call to the doctor to set up another egg challenge. Let’s hope it goes better than the last one.

Allergy Moms and Dads, I would love to hear your thoughts! Has your child eaten food they shouldn’t have? What are your strategies for keeping them safe and having them take responsibility for themselves? At what age is telling your child he/she could die too much information, and at what age is it necessary? And how about that egg allergy – anyone do a baked egg challenge?

The Attune Foods theme this month, “Your a-ha moment,” inspired me to write about when I realized my daughter’s food allergies were real and how I became an allergy mom.

I didn’t know how serious food allergies could be until my daughter’s lips swelled after contact with someone who had been eating cashews. She was two and a half at the time and I didn’t know anyone with food allergies. Looking back, I feel lucky that the worst didn’t happen since we were in Mexico without proper medication. It was after that incident that I began to take food allergies seriously. It was an ‘a-ha’ moment: food allergies are real. And scary.

To read the rest of this article, please visit me over at Attune Foods. Don’t forget to leave me a comment!

Well, it happened. My daughter had an allergic reaction on her 6th day of 1st grade. She never had a reaction when she was in kindergarten at the same school, and at first I couldn’t even figure out what had happened. But the mystery has been solved and I am left wondering how far I should go to protect my daughter.

Here’s what happened:

The school called me to tell me that my daughter was coughing and couldn’t stop, that she had left class and was in the office. They gave her water, but that didn’t help. I wasn’t thinking food allergy at all. I was thinking that she had a tickle in her throat, or maybe allergies to pollen. I didn’t react like it was an emergency. I headed for the school.

When I reached the school, her coughing had gotten worse and she couldn’t stop. Her breathing was affected, but she told me that she hadn’t eaten any food yet that day (it was still early). I was still trying to figure out what could have happened and asked her a bunch of questions as I drove her home. She was still coughing uncontrollably. At home I gave her Benadryl and waited. Luckily, her coughing gradually subsided and her breathing was better.

Later that day I spoke to the teacher and told her that I couldn’t figure out what happened to my daughter but that it seemed like an allergic reaction. The teacher’s eyes got wide and she said, “Ask her if she was playing with Julia. She had a big glob of peanut butter on her shirt and I sent her to the bathroom to wash it off.”

Now, my daughter has never had peanuts in her life, nor has she had a reaction to peanuts. She tested positive for peanuts on the allergy test along with other nuts, so we are very careful, but it has never been tested in real life. Until now.

I asked her if she had played with Julia. No, she said. I asked her again if she played with Julia. No, she said again. Hmmm… I asked her if she touched her shirt by any chance? Yes! Why?? “Because her shirt was fuzzy and she said I could feel it if I wanted.” Bingo! Later I confirmed that the girl in her class had eaten some of her peanut butter sandwich at recess. My daughter touched the girls’s shirt right after recess and then her reaction started. Most likely my daughter put her fingers in her mouth as she sometimes does when she is doing her work.

According to the Food Allergy Action Plan given to me and to the school by our doctor, her coughing was a reaction that warranted the use of an epinephrine injection (Epi-Pen) because her throat and lungs were being affected, and the reaction can suddenly get more severe, leading to anaphylaxis. Because I didn’t think there was food involved, I was so slow to react. I’m not sure if I am in denial or just plain dumb, but this has been a real wake up call for me. I have a whole new perspective on the benefits of having a school be nut-free, but I am not sure I am ready to lead that fight, or even if I feel it is necessary, but it sure would be nice.

I know there are parents out there who feel that making a nut-free school puts a burden on them as parents of the non-nut-free kids. I know there are lots of children with issues surrounding food, but honestly, when you think about the fact that a child could die from touching a kid’s shirt, doesn’t it put things in perspective?

I don’t really know where I’m going with this post, but I hope to at least raise some awareness about the dangers that kids with food allergies face. If you know your child’s friend has a life-threatening food allergy, talk to your child about it and suggest that he/she doesn’t bring that food item to school. Just today, one of my daughter’s friends told her dad to pack her a salami sandwich instead of peanut butter so that she could sit near my daughter at lunch. Kids are amazingly receptive and thoughtful when it comes down to it.  The grown-ups sometimes are the ones who need the convincing!