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
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.
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!! 🙂
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
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?
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
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!
Ask your doctor to order HLA typing for Celiac Disease to see if you have the Dq2 or DQ 8 genes for Celiac Disease. If you don’t have these you most likely have something else. Unless the CD started with you. Most of the time it’s generally transferred from one or both of you parents. Also order saccharomyces cerevisiae Ab IgG &. IgA. I found that serum levels of this test correlated with the grade of mucosal morphology, as the ASCA serum levels declined in accordance with mucosal healing in Celiac people. So if you have damage to your small intestines that is seen in CD this would be elevated. As you heal on GF diet it would decrease. I read this in a research article. I have CD, I also have the gene and was diagnosed on biopsy. I had the bloodwork too.
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.
Thanks! I’m glad you find this post helpful!
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. 💕
Oh Ash, my heart breaks reading your comment. I can’t imagine being a child with celiac and how challenging it must be for her. She is one lucky girl to have you as a mom!! xo
💕❤😍
🙂
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 🙁
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
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.
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/
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
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.
Thanks for sharing, Teri! I imagine it’s easier to find gluten free products now compared to 41 years ago.
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.
I’m glad you found it helpful! So happy we can all share in our experiences together!
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.
Thank you for writing such a great piece , it’s great to be able to relate in so many ways . I was diagnosed with Coeliac’s last year after having my twin boys. It’s so so tough thinking about what to cook for them everyday and trying to keep my anxiety levels low when I feed them gluten as I become obsessed with over washing my hands then scrubbing there’s and wiping their mouths so I can kiss them during the day. It’s actually become so bad that i generally feed them gluten free too as I can at least then relax . I miss being able to go to dinner parties and out for a date night with hubby spontaneously without having to research restaurants . We are going on our first holiday since my diagnosis in May to Orlando and I’m so incredibly nervous . I don’t want my kids to miss out but I’m so worried about how I will get on . We are doing a self catering so hoping I can do a food shop locally and then maybe attempt to eat out on international drive occasionally. I have a lot of research to do and being in the Uk I’m not used to the US supermarkets . I just hope I don’t end up getting glutened 🙁 XX
Hi Sophie, I know how stressful living with celiac is but promise it gets easier! Have you heard of the Nima Sensor? I have one and use it when I travel to make sure I don’t get sick. If you’d like, email me and I can help give you tips for your trip and hopefully ease your anxiety!
Hi msModify …you have discribed exactly my life with thie celiac…so difficult to live with it and it is getting harder…I would like to share something that helps digestive system….papaya and avocado have amazing positive affect for the digestion. thanks again for sharin. sincerely.wishing all good health.
Thank you for sharing! 🙂
Hi dear celiacs, I am late finding this article but I hope I can give some advice as well. I have been a celiac for many years but wasn’t diagnosed until the age of 45. I lost many years of simple pleasures. I always had a digestive problem, always looking for a bathroom. So so stressful until one day my entire body broke down and I could not keep down water. I went to emergency and was placed directly in to a bed. I had lost 50 lbs and looked like a stick. I literally sat on the toilet in the dr.s waiting room until he could see me. Slept in the bathroom for weeks. It sometimes takes a long time to see a specialist. I am very sensitive so even a crumb makes me feel ill. I do still get glutened now and again and feel as described by you except I spill out both ends for hours and have intense pain.
I want to tell you one terrible event caused by my Celiac Disease. I developed stage 3 duodenum cancer . I was a very lucky lady to have an amazing doctor who literally went deep into my gut and found the cancer. (Since my unusual diagnoses, most hospitals now have an extra long tube to get to the grey area of the gut.) There were no other cases of my type of cancer for the doctors to follow. I had an operation quickly then I spent a year in chemo and radiation treatments. At writing this I have lived normally for 7 years but always worry about when it will return. Every time I get glutened I panic about the damage to my gut.
Please do not cheat and please try hard not to be glutened, it can be worse than just eating gluten free. We are alive!