A Celiac’s Breakdown On Gluten-Related Medical Conditions

What is it? How does it work? And what is it like to have it?

Photo by Ali Inay on Unsplash

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.

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.

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.

UW-Green Bay graduate with a major in Political Science and Democracy and Justice Studies. Focused on political writing.

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