Open Letter to Celiac Disease

Open letter to celiac disease

In honor of May being Celiac Disease Awareness month, I thought I would get personal and share an open letter I wrote to Celiac Disease when I was sick in bed. People often don’t know the severity of this illness and tend to link it with food allergies (which it is not!!). Feel free to share this with others in order to spread awareness for this disease. (side note: Celiac is the most genetic autoimmune disease, yet the most underfunded and under researched) Help spread awareness! (Okay that’s my PSA for the day)

Here you go:

Dear Celiac,

My head hurts. My brain feels foggy.  My body aches. My joints hurt. My hand is tingly. My stomach is a mess, everything from cramps to indigestion. I’m  so tired but can’t sleep. In a few days I know my hair will start falling out for a month straight. All because I ate out.

I’m sad because I had plans this weekend; instead of being at the beach with my friends,  I’ve been in bed for two days now.

 I’m angry. I take you serious and rarely eat out because that’s when I typically get sick, and when I do eat out I talk to the manager about being careful with cross-contamination.

I’m hurt because my family says to me “when are you going to learn?”.  Every time I get a flare of you I promise myself that this is the last time and I’ll never take chances again. But really, I know it’s not. I have self-control and never “cheat “with gluten, but at the same time I feel like I have to live my life and not be in a state of constant paranoia.

I hate going out where everyone around me can eat freely and not worry about getting sick because the guy in the back didn’t take me serious and change utensils or a new cutting board.

Everyone always says “It’s not a big deal” or “just go to hang out”. Well you know what… it is a BIG deal to me. I have people ask me if I’m gluten free to watch my figure or that “wow I tried being gf and I didn’t know giving up bread was so easy”. Please… if only it was that easy.

I’ve had friends and even family tell me “I was going to invite you, but I figured you can’t eat, so I didn’t”. That’s what I hate about you… not only do you make me feel physically sick, but you took life as I knew it away from me. You robbed me of being able to be young and spontaneous. I was already a rigid person and a planner, but you took me to the next level.  You have affected my social life, how people around me treat me, my vacations; every aspect of my life. I hate you Celiac, I really HATE you.

 On the other hand, you saved my life and I’m grateful for you. We have a dysfunctional relationship. I know I’m stuck with you for life and am hoping we will work out our issues. It’s just that every time you make an appearance in my life unexpectedly, you throw me for a whirlwind. I know we will get through this together, but as of today I’m mad at you… and myself.

 Your Friend/Enemy,

Kristina

22 comments

  1. Sal says:

    Brilliant. I’m sure you spoke for many of us. I was diagnosed 8 years ago. Celiac wasn’t talked about much at that time. I went through the stages of depression too, but didn’t really realize it. There were very few GF alternatives back then and most weren’t even remotely close to what I had been eating!! Yuck. It was a relatively new disease that most people hadn’t heard of, especially mainstream restaurants!! And then….it was the the hot new “diet” to try. My family thought it was all in my head and I was buying into the latest craze….well, not my husband and kids, they saw firsthand what I was like while eating gluten! After about 4 months and still not feeling great, I went back to my old gluten filled diet. A year later the Gastro Dr. said she felt strongly that it was the gluten and that it might take longer than a few months to see major results. I decided to have another go at being gf and was going to do it with determination and a postitive outlook. Instead of looking at and thinking about all the things I couldn’t have…I now look at all the things I CAN eat, there are a lot!! I’ve tried so many new recipes that are delicious. It’s still hard to eat out, but now I speak up and usually call ahead to find out if they can prepare things gf. The gf products in stores are getting better and better all the time. It’s made a noticeable difference in many aspects of my life and I’m grateful I know how to handle this celiac and live a healthy and productive life. Your posts are very very helpful. Thank you for reaching out to so many of us.

    • msmodify says:

      I imagine it was hard 8 years ago! Luckily awareness is helping to educate people on the issue. Thank you so much for sharing your experience and sharing in this journey with me!! 🙂

  2. Loretta says:

    I have friends that really think I’m sick because I don’t eat Gluten. I haven’t been diagnosed with Celiac but my endo told me to try because of my digestive issues. They have been 80% better. I sure miss my Michelob Ultra

    • msmodify says:

      Have you been tested for celiac? If you have digestive issues you should consider getting tested, just keep in mind you need to be eating gluten in order for an accurate result. They also have genetic testing available. If you feel better gluten free, then that’s what matters! It’s just important to know if you have celiac because if you do, certain follow up care is important. Also, have you tried gluten free beer?

      • Jolene says:

        Hi Ms.Modify,

        I have just discovered you in Pinterest and am very thankful for your Open Letter to help me understand what my daughter goes through and why she’s been having more headaches even following a strict diet. Opened my eyes on how I can support her with your what to do after getting Glutened article. Looking forward to digging into your site.

        Thank you,
        Jolene

        Do you have a post describing the follow up care? What else could I be doing to help heal my daughter’s gut after diagnosed Celiac? On a waiting list to see the Celiac clinic doctor. What should I be asking of them or her pediatrician?

        Thank you,
        Jolene

        • msmodify says:

          Hi Jolene! I’m so happy you found me and glad you found my letter helpful! I’m sorry to hear your daughter is newly diagnosed with celiac, there is definitely a learning curve with this illness. I actually don’t have a post about follow-up care/healing your gut after diagnosis… but I will definitely add that to my list of post ideas because that’s an important one!

          Depending on how long the wait is to see the doctor at the celiac clinic (you’re lucky to have one of those!), you could always ask your pediatrician to order bloodwork for the celiac panel and see if her numbers are dropping on a gluten free diet. I believe I did this 3-6 months after my diagnosis, and then once a year since.

          I know this is a very challenging time emotionally/mentally/physically so please feel free to email me (kristina@msmodify.com) for additional support!

  3. Stewart says:

    I heart This! I’ve worded this so elegantly! I was diagnosed 7 years ago and I remember how miserable it was, I still loath Celiac, mostly when I’m bedridden. I will definitely be sharing this with some of my friends and family.

  4. Ash says:

    This is awesome. I feel this so often and my daughter too. She is 8 and misses out on so much I hate it. Birthday parties are the worst I look like a crazy person when I bring along cake or a treat for her, so she’s not left out, but want to protect her from getting sick. Every time we eat out she is puking sick within an hour and laid out in bed in stomach pain for the next day or 2 after. It’s so frustrating because I can’t be with her at school, friends and family houses. I try to educate and empower her, but she’s a kid and it’s hard when you have people that don’t take you seriously. I’ve gotten comments ranging from “gluten free is a fad, I make fun of you a lot” To “well can’t she have just a little? ” No, she can’t, if you’re allergic to peanuts, you cannot have a spoon of peanut butter. It’s tough. Thank you for this. 💕

  5. Britney says:

    I cried when I read this letter because it’s exactly how I feel and I feel secured knowing I’m not going through these emotions alone! I was only diagnosed with Celiacs a year ago but it’s tuff navigating through the world of food knowing that not only you have to stay away from gluten but your body can’t absorb nutrition as well.. the hardest thing about it is the fact I can’t be spontaneous about going without having to plan if I can eat it.. what annoys me is no one understands the severity of it.. if I go out with friends and can’t eat at a place all they respond is “you can eat salads though..” or “stop being a party pooper”. it sucks not being able to enjoy going out.. when I tell the waiters about my condition they don’t take me seriously.. I try to keep my head up but I feel lost, sad, paranoid and alone 🙁

    • msmodify says:

      Yes to all of this! I’m glad you’re able to relate to my letter, but I’m sorry you have to experience all of it too. Just know, you’re not alone!! Please feel free to email me anytime you need additional support or someone to just vent to! kristina@msmodify.com

  6. Claire says:

    This is just spot on. My daughter was diagnosed at 4 YO, she’s now 6! It’s such a nightmare.. 🙁 I feel so sorry for her, it seems to be bothering her more the older she gets! She has been a bit off this week, couldn’t really put my finger on it but she’s just not 100%, tired, moody, belly cramps.. & then last night bam.. up all night with sever belly cramps! Here I am, finding myself worrying and panicking how has she been glutened? where has it happened? We haven’t eaten out! Maybe I did it.. maybe her mother; her protecter; the one who supposed to keep her safe has glutened her 🙁 oh the guilt I’m feeling!
    I’m so fed up & I feel helpless.

    • msmodify says:

      Oh, Claire I’m sorry to hear you’re feeling this way! Trust me, I can relate to the ups and downs of celiac. I’m sure it’s very challenging for your daughter to be going through this at such a young age, but it sounds like she’s really lucky to have you as a mom that cares so much! If you ever feel like you need additional support, please email me anytime (kristina@msmodify.com)!

      Also, I interviewed a mom of a child with celiac and I think you mind it helpful to hear her insight and see you’re not alone! Here’s the interview: http://msmodify.com/what-its-like-raising-a-child-with-celiac-disease/

  7. Jennifer says:

    Beautifully written. I feel the same, diagnosed 18 years ago. I never thought that in 2018 it would still be a struggle… it is.
    For some reason I’ve been contaminated too many times this year. Maybe I was getting too cocky. Reading you made me feel less alone. ThankYOU

  8. Teri says:

    Well written. I was diagnosed 41 years ago and it doesn’t get easier. Most of my friends are great they just let me bring my own food. I don’t let it stop me from going on vacations. We frequent cruises and yes sometimes I get glutened and am down but I take my ginger candies, water, tea and Imodium pills. The next day I am really exhausted but refuse to let it rule me. It’s a tough disease.

  9. Maggie says:

    I just stumbled upon this post on Pinterest and it made me cry! I was diagnosed with celiac 2.5 years ago and my mom had it for at least 8+ years. I’ve been lucky that I haven’t been bed ridden the past few times I’ve gotten glutened, but it seems to hit me a little differently every time. Sometimes it completely knocks me out of commission for days and sometimes it’s manageable, but uncomfortable. Thank you for sharing your experiences and making us celiacs feel a little less alone.

  10. Megan says:

    Really appreciate this open letter. It speaks to my experiences exactly. I was diagnosed last winter after the holidays and am not looking forward to my first round of Thanksgiving, Christmas, etc feeling isolated eating out of my lunch box while everyone else shares the traditional meals. My husband is very supportive and my personal environment is under control, but I’ve almost given up trying to explain it to my mother. One of the bigger breakthroughs we had recently was when a GF bakery owner told my mother that my request to not bring gluten into my house was legitimate. I have young kids, it’s impossible to contain. Sure, that person has been living with it longer, but I’m her grown daughter and an RN. I’ve explained it every which way. I feel like a lab rat everywhere else. I need to feel comfortable in my own home. It just sucks when your own family doesn’t even understand.

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