What is it? How does it work? And what is it like to have it?
The gluten-free diet has been getting a lot of attention recently. Some of this attention has been positive, some negative, some accurate, and some inaccurate. So, as a person with Celiac Disease, living the gluten-free life, I wanted to break down what it all means and what it is like to live this way. Because I have Celiac Disease, I will focus on that diagnosis, but I will touch on the others.
Celiac Disease v. Gluten Allergy v. the Fad Diet
Gluten is an umbrella term for a collection of grains that some individuals have a level of sensitivity to. These grains are wheat, barley, rye, and triticale (a cross between wheat and rye). This sensitivity can vary based on the individual, and so can the symptoms. Four diagnoses are widely accepted in the medical community: Celiac Disease, Non-Celiac Gluten Sensitivity, Gluten Ataxia, and Wheat Allergy.
Celiac disease is a condition in which gluten triggers immune system activity that damages the lining of the small intestine. Over time this damage prevents the absorption of nutrients from food. Celiac disease is an autoimmune disorder.
Non-celiac gluten sensitivity causes some signs and symptoms associated with celiac disease — including abdominal pain, bloating, diarrhea, constipation, “foggy brain,” rash or headache — even though there is no damage to the tissues of the small intestine. Studies show that the immune system plays a role, but the process isn’t well understood.
Gluten ataxia, an autoimmune disorder, affects certain nerve tissues and causes problems with muscle control and voluntary muscle movement.
Wheat allergy, like other food allergies, is the result of the immune system mistaking gluten or some other protein found in wheat as a disease-causing agent, such as a virus or bacterium. The immune system creates an antibody to the protein, prompting an immune system response that may result in congestion, breathing difficulties and other symptoms.
These diagnoses are very serious and can have an extreme impact on a person’s life. Some people who are eating gluten-free have no other choice because they could die if they don’t. Others with tamer versions of these still need to eat gluten-free even if their dietary choices wouldn’t cause immediate or powerful sickness. Regardless, these people are valid in the gluten-free community and should not be judged for their choices. We have no way of knowing who is eating gluten-free because they have to or want to, but we should respect these individuals’ choices either way.
I would like to note: the claim that a gluten-free diet for someone who does not have any of these disorders increases energy, helps with weight loss, and improves health, is still undecided in the medical community. The Mayo Clinic comments on this saying that it needs to be researched further before any solid decisions can be published.
The Genetics — How it works
The quick answer to how genetics work for people with Celiac Disease and other medical conditions related to gluten is we don’t really know.
Here’s what we do know. Dr. Jessica Madden, an M.D with Celiac Disease says there are two genes associated with Celiac Disease (HLA-DQA1 and HLA-DQB1); these genes belong to a family of genes called the human leukocyte antigen (HLA) complex. This complex helps the immune system distinguish between foreign invaders (e.g., bacteria and viruses) and the body’s own proteins.
The proteins produced from these two genes bind to each other and form a functional protein complex called an antigen-binding DQαβ heterodimer. The complex attaches to protein fragments outside of the cell, and if the immune system recognizes the protein as foreign, it triggers an attack response.
Now, Celiac Disease is associated with an inappropriate immune response to a segment of the gluten protein. So when the body sees this protein in its system, it triggers that attack response. This response causes inflammation that damages the body’s organs and tissues, leading to the symptoms of Celiac Disease.
Almost everyone who has Celiac Disease has the specific genetic markers of the HLA-DQA1 and/or HLA-DQB1 genes. But, these markers are found in 30% of the general population, and only 3% of individuals with the markers actually develop Celiac Disease.
We know that Celiac Disease tends to cluster in families, but the actual inheritance pattern is unknown. It seems likely that there are other contributors to the disease, such as environmental factors, but we haven’t yet been able to fully grasp where this disease comes from.
Overall, the research on Celiac Disease and other related medical conditions has come a long way since I was diagnosed 21 years ago. However, it still has a long way to go before we can completely understand the complexities of this issue.
Do’s and Don’ts When Interacting with Gluten-Sensitive Individuals
As I mentioned earlier, I have been living with Celiac Disease for twenty-one years now. So I have had countless interactions with people on the subject. Some come to me for advice because they or their doctor suspect they might have a gluten-related medical condition. Others will offer me something I cannot have, which leads to an entire conversation about why I can’t have whatever it is they are offering. Based on this, I want to spend some time discussing things that people like me experience and what to avoid when you interact with us.
- Don’t: Be dramatic. When you offer us something we can’t have and then you realize what you’ve done, please do not say stuff like “oh my gosh, I could have just killed you.” We know what we can have, and your offer in and of itself isn’t going to harm us because we would have refused it. We know what we can and can’t have, we live with this diagnosis every day of our lives. It’s in our society’s culture to offer food, we are aware of this and we have learned how to say no. Trust that we know what we are doing.
- Don’t: Get upset when we don’t trust the food we are given. This reaction is nothing against you personally, but we have been burned in the past and want to avoid it happening in the future. It is extremely common for us to say no to foods that might have been fine but we don’t know that, and our condition might be severe enough that we just can’t take the risk. Please do not try to convince us that it is fine and push the issue further. Once we have said no, accept that answer and move on. We have nothing against your cooking, we just value our bodies and we live our lives based on its needs.
- Don’t: Question us. Please do not question when someone says they can or can’t have something. This condition is very personal and not everyone who has it will have the same reactions to everything. It may seem like you are being helpful by offering us information about something we are unaware of but it is dangerous territory. You may think it is safe for us when in fact it is not. We are the experts of our body and we have rearranged our entire lives to accommodate this condition.
- Don’t: Ask us what gluten-free foods taste like. Some people with gluten-related conditions were diagnosed later in life and may have an answer to this question for you. Some people — like me — were diagnosed so young that we either never ate food containing gluten or we don’t remember it. Regardless, asking this comparison does not help us. You are either asking a question we couldn’t possibly have the answer to, or you are reminding us that we can’t eat “normal” food. We are not an exhibit to stare at and examine and we don’t want to be treated that way.
- Don’t: Complain about the cost. Gluten-free food is more expensive than the food you are used to buying. We all know this, and yep, it sucks. Nothing good comes out of reminding us that the food we need to survive is perpetually more expensive. Gluten-free foods are on average 242% more expensive than regular foods. That is money coming out of our own pockets on a daily basis. So when you complain about the price on the limited occasions that you buy something for us, we have a hard time feeling sorry for you. Or, we will feel so bad about it that we will actively avoid ever letting you buy something for us again. The price absolutely sucks, we know. It’s not a talking point for conversation.
- Do: Be understanding. When we go out to eat with you, talk about it with you, or just exist in a conversation with you, please understand that the person with this diagnosis is the one being inconvenienced the most. We would love to be normal, but we aren’t. Telling us how inconvenient it is that we can only go to specific restaurants because the gluten-free person is along is not helpful or even kind.
- Do: When cooking for us, include us in the process. Bring us to the store with you, let us pick out the brands we know are safe. Gluten hides in places no one who isn’t affected would ever even think to look for. We are trained to look for it, you aren’t. We don’t expect you to be and that is not an insult towards you. We don’t want to spend the entire meal with you worrying about what we are putting in our bodies and we appreciate it when the people in our lives understand that without judgment.
- Do: Be open but accept the consequences of it. I love it when people in my life want to try gluten-free food. Being curious is okay, embrace that with us. But if you are trying our food, please do not complain about how it tastes or how bad it is. If we are sharing a food with you, it means we enjoy it and we do not need to be reminded of its second rate status.
- Do: Be aware of the terms we use to describe our condition. Allergy and intolerance are not the same things. Use the terms that we use to describe ourselves because it is an important distinction for us. If you use the wrong term and we correct you, just quickly apologize and correct yourself. Don’t dwell on it and talk about how there are so many different terms. And please do not try to make it plural by saying Celiacs Disease. There is no ‘s’ at the end and we are tired of hearing it. To us it means that you don’t know what you’re talking about and you aren’t trying to.
- Do: Treat us like people because that’s what we are. When we received our diagnosis, we were told that we have to change our entire lives to accommodate this condition. In a lot of ways, it rules our lives. But we are more than our disease and want to be treated that way. Don’t make a big deal about it. Defer to our judgment about what we can and can’t have and be understanding of that. Please don’t make us feel bad for the requirements of our lives. We are who we are, adding your emotional baggage onto that is not going to improve the situation for anyone.
Overall, people with gluten-free diets lead normal lives. We have passions and interests that extend past our condition and we would love to explore those avenues with you. We understand that it can be a lot to adjust your life to, and we attempt to reduce inconveniences for you as much as possible. But living in a society that revolves around food culture that we cannot adhere to can be exhausting for us. The social and emotional ramifications of this condition are just as valid and just as damaging as the disease itself.