What I wrote about yesterday stirred up some great topics for debate. I tried to read all the comments where my article was shared on social media and here on my blog, and respond personally to all of them. If I missed your comment or share, thank you so much for reading. There were so many of you that appreciated my article, and only a few negative reactions. So today, let’s talk about allergies, food intolerance, and social tolerance.
First, let me say that I am not a doctor, dietitian, or nutritional therapist of any kind. I do have certification in Nutrition and Safe Food Handling practices in the restaurant industry from my degree in the Culinary Arts and from ServSafe certification required of all restaurant managers in the US.
But I also have personal family experiences of both life-threatening allergies and milder food intolerance, so let me tell you a little about that.
In 1990, when I was five years old my little brother, Chandler, was born, and from very early on it was clear that he was allergic to something. My mom had initially tried to breastfeed, but my brother broke out in terrible Eczema, especially on his face and little nose.
She told me that at the time, it was recommended to lay babies on their tummies, and the poor little guy would rub his nose vigorously on the sheet because his face hurt and itched so much.
My mom said that the doctors offered no answers and no help, just ineffective prescription creams. They didn’t seem to want to find out why it was happening, just to give my mom some medicine to treat his condition.
She took it upon herself to read everything she could and had to realize on her own it was likely that foods were causing this serious problem. But remember – this was in 1990. There were no blogs she could read, and what we knew about allergies was very little.
She had to seek out obscure books, which only led to more questions than no one could answer. Since she was still trying to breastfeed, she put herself on a super restrictive diet, eating little more than chicken and green beans because she just didn’t know what was safe to eat.
Chandler’s eczema went away, but my petite mom lost a lot of weight on the restrictive diet and decided to stop breastfeeding after 4 months so that she wouldn’t lose too much weight.
She sought out the dairy-free formula, and when Chandler was old enough to be introduced to solid foods, she very carefully stayed away from all potential allergens that she had read about while researching eczema.
For a long time his diet was very limited, and my mom was very slow to introduce new foods to him, fearful that she would feed him something that would hurt her sweet little boy.
Even with a very limited diet, my brother was a vibrant, happy, healthy little boy and he never showed any signs of being malnourished or underweight.
His favorite food was sweet potatoes. I can’t imagine how my mom must have felt. She didn’t have the GAPS diet or Paleo, but she figured out a way on her own to determine which foods he could eat, and she managed to feed her little boy and make him healthy and strong.
My mom told me that at that time, allergists wouldn’t even agree to treat or test children until they were 4 years old. My brave, smart, strong mom was truly on her own with no guidance.
Once he was older, he had successfully introduced a wide variety of foods, and it was clear that his only severe allergy was to milk, in addition to seasonal allergies and is allergic to mold. Chandler is not lactose intolerant and it has been a constant struggle to help our friends and family (and restaurants that he eats at) to understand the difference.
“Lactose intolerance means the body cannot easily digest lactose, a type of natural sugar found in milk and dairy products.
Lactose intolerance most commonly runs in families, and symptoms usually develop during the teen or adult years. It occurs more often in Native Americans and people of Asian, African, and South American descent than among people of European descent.”
My father, mother, and I all have a degree of lactose intolerance. On both sides of our family, we have some Native American heritage, which could explain this to some degree. My brother, however, is completely allergic to the milk protein, casein.
“A food allergy happens when your immune system overreacts to certain foods. In most cases, the reaction is mild, causing symptoms like a rash, a stuffy nose, or an upset stomach. A serious food allergy can make your tongue or throat swell and make it hard to breathe. This can be deadly. Quick treatment can stop a dangerous reaction.”
My brother’s allergy to the milk protein starts out with the mild warning symptoms mentioned above. His throat becomes “scratchy” and he starts to have trouble breathing. He also has Asthma, which can be triggered by milk in addition to mold and other seasonal allergy irritants. If he does not get to his inhaler or an anti-histamine quick enough, the reaction can escalate to full-blown Anaphylaxis.
“An anaphylactic reaction may be characterized by the development of an itchy, reddish rash (hives); a severe drop in blood pressure; swelling and obstruction of the mouth, nose, and throat; abdominal cramps; nausea and vomiting; diarrhea; and severe difficulties breathing. Without immediate, appropriate treatment, the condition may rapidly lead to a state of unconsciousness (coma) and life-threatening complications.”
– Source WebMD
I know my mom and dad struggled a lot when Chandler was young to find foods that he could eat. In 1990 there were no blogs to help my mom learn what to do or to help her find recipes. You couldn’t just “Google It” to figure out if a certain food contained milk or not. My mom learned how to read the labels, and how to look for all the words that meant milk.
It was hard, and sometimes she made mistakes and accidentally gave him food with milk in it and he would have a reaction. One time she even accidentally made him a birthday cake with a cake mix she had used before that was milk-free, but she didn’t realize the company had changed the ingredients, and so the poor kid was allergic to his own birthday cake. I’m sure she felt really guilty.
She had to teach my whole family, my grandparents, other relatives, babysitters, and teachers how to read labels and what to do in case of an emergency. If you think that the awareness about allergies is lacking now, multiply that by 100 for almost 25 years ago.
Now on most food labels, it is clearly marked under the full ingredient list if the product contains milk, wheat, or tree-nut ingredients, but that was not the case in the ’90s.
It’s heartbreaking and stressful to have to teach a child from birth that he can’t eat what all the other kids eat. Long before it was popular, my mom was sending food with Chandler to birthday parties because he couldn’t have the pizza, cake, and ice cream that the other kids were eating.
My grandmother clearly remembers one time when she took me and my brother on an outing and I asked for an ice cream cone (this was before I developed lactose intolerance).
She bought me one and had to find something else for Chandler. He was disappointed when she said, “No honey, Katy’s ice cream cone has milk in it.” Tearfully he said, “Can I just smell it?” Heartbreaking.
One time I bought Vegan Chocolate Chip cookies at Whole Foods and even asked the manager if they were completely free of milk to make sure.
I brought them to Chandler and he ate them happily trusting me and the label. Turns out, he had one of the most severe reactions he has ever had from those cookies. I felt SO guilty and SO mad that I had trusted those cookies too. It might have been an honest mistake, and the baker may have inadvertently cross-contaminated the cookies. I don’t want to accuse the company of being deliberately misleading with their product, but this incident still happened.
My experience growing up with Chandler has taught me a few things. First and foremost, it is very scary to watch him have an anaphylactic reaction. He’s been taken to the hospital by ambulance quite a few times.
This experience makes us over-protective of him at restaurants and we probably annoy both him and the waiter when we are adamant that his food be prepared without milk or dairy of any kind.
I used to interrupt him after he ordered to clarify the point more intensely to the waiter, and I had to learn to stop and let him do this for himself. He doesn’t want to be different or call attention to his condition, but he has to and that’s hard.
One thing that I have also learned is that each time he has a reaction it is different based on the situation. If he has ordered a hamburger at a restaurant, and they put butter on the bun before they toast it, or they put cheese on it out of habit even though we requested them not do that, he has to send it back. He has to trust that they will make him a new one, and not just switch out the bun, or peel off the cheese and send it back to him. Sometimes this happens and he can tell.
Maybe not right away, but probably by the time we are done eating.
One time he had eaten something with a small amount of milk unknowingly, and then a few hours later he was playing basketball and the attack came on suddenly without warning. Thankfully, he was playing ball with a neighbor on our street who was a doctor and knew about his allergy. Our neighbor ran to our house to grab an EpiPen and knew what to do. Chandler avoided a trip to the hospital that time, and we were all thankful.
Now, Chandler isn’t a weak guy, and his allergy doesn’t stop him from living life fully. I’m actually really proud of him. He’s strong and athletic, and a senior Cadet at The Citadel, a highly respected military college in Charleston. He’s worked really hard and he is about to graduate this year and earn a prestigious Citadel Ring.
My parents were a little nervous about sending him to the school because of his allergy, but they trusted him to let his friends, superiors, and the dining hall know about what his needs are, and it has been just fine. In fact, there is a designated person in the dining hall that prepares his food for him, and he has become good friends with this cook.
I tell this story not to embarrass him, but to encourage moms out there who have young children with severe allergies and let them know that even though it might be hard. Their kids can grow up to be strong, healthy, and successful.
So an allergy and food intolerance have some commonalities. In both cases, a person eats the food and then suffers the consequences. The difference is usually that an allergic reaction is more severe and can be immediate and life-threatening. It can also take some time to develop into a full-blown attack based on the circumstances. It depends on so many different things. In addition, I’d like to point out that a severe food allergy can present itself later in life.
I personally know someone who developed a severe allergy to wheat later in life and is now diagnosed with Celiac Disease and carries an EpiPen in case of an emergency. But for the majority of her life, she ate wheat without such a serious reaction.
My food intolerance issues are not life-threatening like my bother’s allergy, but they are serious. If I eat gluten on a regular basis, in addition to having heartburn, digestion issues, and headaches, I lose my period. That is unequivocally a sign of an unhealthy body.
In the article I wrote yesterday, I was honest about the fact that on very rare occasions I will have some foods that contain gluten in them. I acknowledged that it is a choice that I actively make in full knowledge of the consequences.
This admission made some people angry because they thought I didn’t really understand what it was like to be Celiac and never be able to have gluten again. They thought I was perpetuating the idea that it is “ok to just have one bite” and that my article was taking away from the seriousness of their condition.
But I talked about it openly because I don’t want to perpetuate the idea that if you want to live a gluten-free lifestyle you have to be completely perfect in order to greatly improve your health, provided that you don’t have a serious life-threatening condition. But I know that for some, just one bite is never possible, and I acknowledge that is really hard to deal with logistically and emotionally.
I hope that by discussing allergies and food intolerance I have cleared up some confusion on these issues. I think it is probably pretty clear that I don’t take either of these situations lightly. And you know what? I am really sorry that I can have gluten on rare occasions, and while I may experience some pretty strong reactions, they are not immediately life-threatening, and that may be really hard to hear if you can’t ever have gluten again.
My article yesterday wasn’t to rub that in your face, but merely to talk about how hard the gluten-free lifestyle can be for anyone regardless of how severe their reaction to gluten is.
I think it is important to acknowledge that it is a hard path and to deal with the feelings of loss and grief of any food that you have to give up for health reasons.
What I do want is to encourage a positive attitude about the subject of allergies and food intolerance, regardless of severity. I hope that by being open and honest about my personal experience that I can encourage more social tolerance on these issues.