“I’m not allergic to food, food is allergic to me.”  Tribe Member, Mary S.

Food allergies, I know them well. I’ve had them my whole life but didn’t know it until 2007. By then, they had ravaged my body and left me with some irreversible illnesses. But the realization that I had food allergies was much more cathartic than it was upsetting. At least now I know what’s going on and, more importantly, I can do something about it. As a friend and fellow Celiac recently said to me, “Gluten is allergic to me, not the other way around.” So the trick is learning how to work around the food that is allergic to us so we can live healthy, happy and full lives. The first step is acceptance, quickly followed by education.

Celiac Disease

One in 133 people have celiac disease. That’s more than 2 million people in the U.S. alone. More than 97% of people with celiac disease have never been diagnosed.

According to the Celiac Disease Foundation, the symptoms of celiac disease are one or more of the following:

• Recurring bloating, gas, or abdominal pain
• Chronic diarrhea or constipation or both
• Unexplained weight loss or weight gain
• Pale, foul-smelling stool
• Unexplained anemia
• Bone or joint pain
• Behavior changes/depression/irritability
• Vitamin K Deficiency
• Fatigue, weakness or lack of energy
• Delayed growth or onset of puberty
• Failure to thrive (in infants)
• Missed menstrual periods
• Infertility male & female
• Spontaneous miscarriages
• Canker sores inside the mouth
• Tooth discoloration or loss of enamel

The Five A’s of a Food Allergy Diagnosis

As with any emotional event, a food allergy diagnosis can be somewhat traumatic. Whether the person who received the diagnosis is you or someone close to you, it can create a lot of unknowns for everyone involved.

Having experienced this myself with my diagnosis in 2007, I’ve come to realize that there are at least five stages that people go through. I named and have defined these stages based on my own experience, the experiences of the people closest to me and those of my food allergy clients. Your experience may be different. But this list may help feel less alone and more empowered as you navigate the brave new world of managing food allergies – or it may arm you with useful information to help someone you love.

Stage 1: Anticipation

This stage usually occurs when a person is tested for food allergies and has not yet received a definitive diagnosis, or before.

By the time most individuals get tested for food allergies – whether a child or an adult – that person has been unwell for quite some time. In most cases the individual has been poked, prodded, tested and misdiagnosed for years, and/ or they have been put on medications and diets that didn’t make a significant and positive impact. In other words, they are used to getting ineffective information or bad news.

Food allergy tests, when done properly, are actually quite simple to administer and diagnose. But the results may take a few days, and additional tests may be required to hone in on the specifics of the diagnosis. Regardless, if you are the person who is waiting for test results (or if you are part of his/her support network), you are generally filled with anticipation at this point.

Stage 2: Apprehension

Stage 2 can come into play in the midst of Stage 1, and usually lasts until just after the food allergy diagnosis.

Waiting for a food allergy diagnosis can create a lot of apprehension. It’s not the waiting that’s challenging – it’s the thought that the tests results are probably going to go one of two ways:

1.)   “I don’t have food allergies. So what’s wrong with me and what else will I have to go through to find out?”

2.)   “I have food allergies…now what?”

Apprehension at this point is understandable. You can manage your own apprehension (or the apprehension of someone you care about) by talking about the positive aspects of knowing what is truly going on with your body. Don’t dwell on worst case scenarios – think about being free from this temporary state of apprehension and what that might do to improve your quality of life.

Stage 3:  Anger

Stage 3 usually kicks in within a few days of a definitive food allergy diagnosis. And it can recur intermittently over the course of the next few months.

People experience a myriad of different reactions when they are diagnosed with food allergies. Some feel a sense of relief, others go right into denial, and some have a complete emotional breakdown. But within about 48 hours most – although not all – of them experience some degree of anger.

Anger is a secondary emotion – it’s usually a coping mechanism that is brought on by other emotions such as fear, grief, frustration, confusion, etc. The key to getting through this stage is to find a safe way to uncover the emotions underneath the anger and address them one-by-one. Some ways to do this are to write your emotions in a journal, talk to a trusted resource or friend, or join a food allergy support group (in-person or online).

The point is to not let the anger consume you. Be proactive and take charge of your health, and you will be rewarded. I promise.

Stage 4: Acceptance

Stage 4 is completely within the control of the person who was diagnosed with food allergies. That’s good news, by the way.

Getting through Stage 3 can take a while, depending on how proactive you’ve been about getting through it. And it certainly helps if the people closest to you are supportive, and are actively trying to learn how they can help with this change of lifestyle. For instance, a spouse who learns how to shop, cook, handle food and offer emotional support is going to be a huge help in getting to Stage 4. But with or without the support of the people closest to you, it’s up to you to get to a place of acceptance about your food allergies.

With acceptance comes empowerment. Once you accept your new lifestyle and the fact that the way you eat needs to change, you are well on your way to a much more rewarding experience. Instead of feeling victimized by food allergies or as if you’re a hostage in your own body, you will be open to the possibility that food allergies don’t have to be painful to manage. In fact, you will probably find that there are more resources and foods out there for you than you ever imagined!

Stage 5: Assimilation

Stage 5 comes quickly on the heels of Stage 4.

Unlike most other illnesses, allergies and diseases, food allergies are largely controllable by the choices of the individual. But how do you start making the right choices? The first step towards making good food choices and ultimately assimilating them into your daily life is to arm yourself with information. Education is critically important at this stage. Some of the things you will want to learn include:

• The names of all of the foods and ingredients to which you are allergic (Living Without has good lists online)
• How to choose alternatives to allergens that are healthy (check out some of the foods I love)
• How to shop and cook

People often comment that I am really good about sticking to my diet. And I always laugh when they say that as if it’s some kind of inside joke between me and my food allergies. For me, not eating foods to which I’m allergic is an easy choice to make because I was so unwell for so long. I’m not trying to lose ten pounds, I tell people; I’m saving my own life. And you will too, as soon as you can get yourself to Stage 5.

The bottom line

Change is scary. Finding out that you or someone you love has food allergies is really scary. 

Food is a very central part of the human existence – it’s supposed to be good for you, not bad for you. And we all have rituals, traditions, habits and distinct preferences tied to the food we eat, how it’s prepared and with whom we share the experience of eating. A food allergy diagnosis can turn all of your beliefs and expectations about food on their head. It can be overwhelming.

And that’s okay.

The emotions you experience with a food allergy diagnosis are normal, and they are actually an important part of your journey to wellness. At each stage you will learn something that gets you closer to true health from all perspectives. So be gentle with yourself, and take steps toward regaining a sense of ownership and peace about your food allergies. And, as Take Time for Your Life recently noted on Facebook, “It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power.”

mydietribe offers services to help people with food allergies move through these stages in a healthy way and take control of their diets and lives again. Take a look at what we have to offer and let us know if we can support you.

Reliable Resources:

The Food Allergy & Anaphylaxis Network

Celiac Disease Foundation

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