Food... As you all know from my previous post about "If I were you, I'd wanna be me too" I love food... but I also love my health. That is why when I was told I have Celiac Disease (especially after being told I have an allergy to rice) I was devastated!😫 Silly right?! Of course, at the time I did not think it was silly at all. My first reaction upon waking up from an endoscopy and being told "You have Celiac Disease," was "😭 But I'm allergic to rice!!! What the heck am I supposed to eat!??!.... No bread, no pies, no cakes ( I don't even like cake... but it was the point of the matter😂)".
The doctors were all very kind and found some information for me about eating gluten free with a rice allergy, but they left me with just that... "stop eating gluten" was my treatment for the disease. Boy was I in for a huge surprise! For those of you who struggle (or those of you that have embraced the disease as I am still in the process of working on) you know how much more difficult it is with Celiac than to simply "stop eating gluten". Then to add to the stress of barely having any options for food (unless you happen to live in an area that understands Celiac Disease), you have people who make fun because they think it is a joke, all the other foods you shouldn't eat because they will make you feel sick as well (especially dairy), and the frustration of having to spend A LOT more money than you did before you found out. 🙄 So I am here to help those of you with friends or family that have Celiac Disease, or those who just like to be educated on life, what it is REALLY like to live with Celiac Disease.
First I would like to begin by explaining what Celiac Disease actually is. Yes, it means you cannot eat gluten. That seems to be everyone's take on it for the most part. BUT WHY!?! A lot of people who do not have the disease (and even some who do) never really bother to ask why it is that not eating gluten is the treatment. This is where Celiac Disease, Non Celiac Gluten Sensitivity (NCGS), and Gluten allergies differ...A gluten sensitivity or allergy is just like any other allergy. It might make you sick to your stomach, give you hives, or make you throw up, but it is going to end there. It is very rarely causes any permanent damage to your body. Celiac Disease is an Autoimmune disease. This means your body mistakenly attacks and damages its own tissue. For someone with Celiac Disease, gluten is a trigger. When the gluten makes its way through the small intestine, the persons immune system thinks it is bad and will begin to attack the walls of the intestines. This can cause serious, and permanent, damage if it the disease is not diagnosed early enough or treated properly.
With Celiac Disease, unlike NCGS or a gluten allergy, you have to be eliminate gluten completely. Most people do not realize this means not only making sure none of the ingredients in your food contain gluten, but also making sure there is no cross contamination. That means if on the food label it says may contain traces of wheat, or any other gluten containing ingredient, you should not eat it. Some people even have to eliminate gluten in other products such as body wash, hand soap and lotions. This can be more difficult than people realize, especially when they live with others who do not have to eat gluten free. Some good ways to keep from accidentally cross contaminating yourself (or accidentally being "glutened" as some Celiac's call it) are to make sure everyone coming in contact with your food (to include yourself) washes their hands thoroughly, make sure the area you are preparing and cooking on is cleaned thoroughly, and make sure anyone coming in contact with your food is aware of your disease and understands how it affects you. If you are eating out, make sure the server and the chef are aware of your dietary restrictions. Fast food is not usually a good place for someone with Celiac, however there are a few chains that are Celiac friendly. A couple of my favorites are
Chick-fil-a and
Burgatory. You can look up online for Celiac friendly places near you, but do not forget that Gluten Free DOES NOT mean Celiac friendly.
That all being said, I would like to give those of you who do not have Celiac Disease, and those of you who have recently been diagnosed a little look at a day in the life of someone with Celiac Disease.
This morning I woke up with heartburn at 9am after not sleeping well at all. My first thought was food, because I know the heartburn was from lack of food. I went down to the kitchen and popped a couple Gluten Free (also rice free as I am allergic to rice)
English Muffins into my toasters (toasters I bought to separate my foods from my family's because they do not have to eat gluten free). After they had been toasted, I put a dairy free and gluten free
"butter" spread on my English muffins (because dairy is something else I have to try my best to avoid due to the Celiac Disease). We have a friend helping us remodel our kitchen (to keep cost down because God knows my disease is so expensive we have to save anywhere else we can!) so I spent the morning sealing all the cabinets and drawers to avoid any drywall dust from going into them, only to realize I could not cook anything until he was finished with the kitchen. Once I finished I left for my appointment. After my appointment, my boyfriend messaged to let me know that him and his son had already eaten (they had hot dogs because they can eat whatever they want 😅) So I said I would just grab something from Chick-fil-a on my way to get my kids and then head home. It was not until my sister called to ask if I could stop by, when I was half way to Chick-fil-a, and reminded me it is SUNDAY that I realized Chick-fil-a is closed today! 😓 So there I was, on my way to meet my sister and realizing I cannot buy anything to make at home because my kitchen is not able to be used right now, and the only fast food restaurant I can eat at is closed!!! So of course, I call my mom, because she always knows the best thing for me to do in a situation like this 😀 and she says see if they have any rotisserie chicken at Walmart. After meeting with my sister I head to Walmart and search for anything that is not boring to eat for lunch. I ended up with a rotisserie chicken... By the time I got home it was 2 o'clock in the afternoon, and I have barely eaten, which is not good for me because my metabolism is so fast I get sick if I do not eat enough. I sat down to eat my chicken (with my fingers because I forgot I do not have access to any of the silverware right now). It was very bland and boring. When I was finished I sat down to work on my final in my online nutrition class (I am working on my Associates in Psychology) and the entire time I am sitting at my computer all I can think about is food. I am ALWAYS hungry. Upon finishing my homework assignment I went to the kitchen and grabbed a
gluten free fig bar. It is now almost 7pm and we have not even figured out what we are having for dinner, but there is a good chance we will be going out to eat... which means either gluten free pizza or Denny's.😩
Most meals I eat are meat, vegetables and potatoes. That is not too bad, but snacks are much more difficult. There are not a lot of options where I live for Celiac friendly snacks. Some days are worse than others. Sometimes I eat eggs and bacon for breakfast, quesadillas with corn tortillas for lunch, and steak with baked potatoes and asparagus for dinner. Other days I search the store and cannot find anything I want, and everything I crave is not Celiac friendly. Even the ice cream in the stores around where I live are not Celiac friendly (yes I have actually cried about not being able to eat ice cream anymore... as well as not being able to eat wheat bread). Having Celiac Disease can be a struggle, but I do the best I can to embrace it! There are a lot of people who do not understand it though, and that can make it very difficult at times. I have had people say things like "well can't you just take a cheat day" or they make fun of me for asking that the cooks change their gloves or bringing my own food to events outside of my home. I do my best to educate people who do not understand, which is why I am providing some information for those of you who would like to learn, or need to learn for yourself and for others.
Common Misconceptions
1. Celiac Disease is not deadly -- WRONG!! While it is not common for someone to die from the disease, if it is not diagnosed early enough, or if it is diagnosed and the person chooses to continue eating gluten, it could result in intestinal lymphomas and other cancers which can lead to death.
2. Eating gluten free is just a fad -- Although some people believe that eating gluten free is a good way to lose weight, it is also a dietary necessity for some people. Whether it is Celiac Disease or NCGS it is a very serious thing. Eating gluten free if you do not have to can actually be bad for your health. You should always consult a doctor before changing your diet.
3. Celiac Disease is just an allergy to wheat -- First of all, it is not an allergy, it is a disease (as stated in the name). Also, it is not JUST wheat. Gluten is commonly derived from wheat, barely, and rye, but can be found in many things such as beer, pasta, and graham crackers.
4. Celiac Disease only affects your gut -- Celiac Disease may affect your small intestine more than anything else, but it can affect your whole body! It can make you very sick in so many ways. A few common ailments/symptoms are acid reflux, bloating, constipation, and fatigue.
5. Celiac Disease is rare -- It may not seem like a big number but about 1% of the population has been diagnosed. That does not mean only those people have it, it just means only those people have been diagnosed. To show how common this is, people compare it to the fact less than 2% of americans are redheads. That is how common it actually is.
6. Life is not worth living with Celiac Disease -- I must admit this was one I struggled with. Not eating gluten anymore can be very difficult and frustrating, but there are ways to make it work!! If you have been diagnosed with Celiac Disease, it does not mean your life is over, it just means you need to make some changes to your lifestyle.😀
Helpful Information for people with Celiac Disease
2. Make sure you are getting the right amount of vitamins and minerals. If you are not getting enough vitamins and minerals from your food intake, talk to your daughter about multivitamins.
3. Educate yourself on Celiac Disease. The more you know, the easier it will be to keep yourself healthy!! This is a good link with a lot of information to help you learn about
Celiac Disease.
4. Having Celiac Disease is not eating JUST gluten free, most people with Celiac Disease also need to avoid other foods such as dairy and tomato sauces.
If you have Celiac Disease, please check out the links that have been provided throughout this post. It may be frustrating, but it is not the end of the world.
Ok, I know this song does not have anything to do with Celiac Disease, but it does go along with the NO CROSS CONTAMINATION.... haha I Can't Touch This (gluten).
