Part 1: Your Voice!

Your Voice

In honor of May being Celiac Awareness Month, rather than me just share my experiences living with the disease… I want to hear from YOU! Each week last month I asked a different question about living with celiac disease and the responses I got were incredible!

This post is an add-on to last year’s post. I decided to ask the same questions this year for two reasons. First of all, I don’t know about you but my feelings and knowledge regarding living with celiac are constantly changing. So, I figure even those that answered last year will have different feelings and responses this year. My second reason for asking the same questions this year, is that last year I received SO many insightful, heartfelt responses that I thought it would be incredible to add to the lists and help create this very personal resource for people living with celiac.

It makes me so proud to be a part of such a strong community and really helps me believe that I’m not alone in this struggle!

The first week I asked you to fill in the blank:

“The most challenging aspect of living with celiac disease is ___.”

If I were to answer this question I would say for me personally the most challenging aspect of this disease are social situations. Even six years post-diagnosis I admit, sometimes before I head out to a party or other social events I feel anxious. Do I love packing my own food to take with me? Nope… Do I like when people ask me if I’m dieting? No… Do I like feeling anxious every time I order at a restaurant and hope they don’t mess up my order? Not a bit. Does it hurt my feelings when people say “I think you make it a bigger deal than it is… a few bites won’t hurt you”?  Absolutely.

Six years later I have finally learned to not care what others think and put my health first. A couple years ago I wrote an open letter to celiac and shared some of the challenges I felt. You can read that here if you’d like!

Now on to your responses!

(I’m keeping all answers anonymous to respect everyones privacy)

  • Making sure my 8 year old son always feels special and not left out. It’s hard enough being a kid, but being a kid with celiac disease can be challenging.
  • Trying to tell people that this is a disease not a choice..like yes I’m dying to have that piece of cake or pizza but I can’t because it will hurt like hell. People just have to know the differences between people having a gluten free diet because they want to have a healthy lifestyle or because there is no other choice!!..i’m 23 years old, i’ve discovered that I have celiac a few month ago, and it’s so hard for me to fit in with all these things, and I’m tired of explaining myself to people who actually don’t understand or don’t care, because it’s not a well-known disease doesn’t make it less important.
  • Ensuring my daughter is in charge of her disease and not the disease is in charge of her. Diagnosed at 8 yrs, with history of illness, she will be the victor.
  • Travel. Long haul flights are tough. As is staying in places who aren’t aware of coeliac disease, especially if you don’t speak the language.
  • Trying to figure out what you can or can’t eat at a buffet and how difficult it sometimes is to track down a chef to help you out.
  • Planning ahead.
  • The anxiety of going out to eat.
  • What bugs me the most is that people treat this as a joke, and call it a fad, a diet. It’s a way of life, not a diet, and they can’t seem to grasp it. I am tired of restaurants and manufacturers jumping in on what they consider a craze. Their staffs are ill prepared to deal with us properly. There are restaurants I no longer eat at because I have been glutened too many times. So far I trust Five Guys and Outback. Red Robin and Chik-Fil-A have made me and my daughter-in-law ill too many times. I hate hearing that I can get gluten free pizza only to find out it is prepared in the same place and using the same equipment. It’s not all bad though. I have made lovely friends online that share my feelings, and we can vent or laugh. We laugh a lot, especially over doctors. I think one of us would know more about what celiac disease is and isn’t, than a trained physician would.
  • For me it’s the social aspect. Everything social revolves around food. It’s a hassle to have to make & pack food for myself & my son. I’m already incredibly busy & don’t need or want more work. I don’t look forward to or enjoy social stuff anymore. I used to really LOVE going to pot lucks & sampling all the foods. In all honesty I dread it now & will very often look for a way out if I can.
  • The most challenging (and frustrating) aspect of celiac disease for me has been the absence of finding good health care providers!!! Looking back, my body was out of sorts for years – but the last two yrs before a diagnosis were BAD! I lost a considerable amount of weight, suffered poor health and debilitating GI issues …. and after repeat visits to my physician and GI Dr – I was carelessly (repeatedly) sent away with “Its just IBS!” I KNEW that diagnosis was incorrect. I did my own research, approached my physician of 30+ years with the request for a celiac blood test! Positive! The endoscopy that followed confirmed my small intestine was extremely damaged due to celiac disease! Two doctors missed this – and one was a GI specialist! After 8 months on a GF diet, and still feeling pourly – MY research suggested a celiac should have thorough blood work! Again – I had to ask!!! MY Inquiry revealed I was VERY low in B, D-3 & folate which necessitated supplementation. The last two years, prior to a diagnosis, I suffered serious and repeat sinus infections which I feel was celiac/auto-immune related. This is ongoing. Repeat use of antibiotics is the last thing I want to do – but none of the doctors/specialists are willing to look at the celiac link. Where does a celiac sufferer find knowledgeable medical help and medical support (an informed physician!)? (Feedback welcome!!) Next struggle would be the social aspect – so many gatherings/relationships/social activity involve food! Along with that …. I have been hesitant to resume traveling with my friends and feeling confident I will find safe food! I think the celiac community would benefit from a support group – a place to share information and offer support and education! Thank you! Rant over! 
  • It impacts every aspect of your life! How you shop, how you look at food, how you cook, bake, etc. Also, meeting friends for drinks and a quick bite to eat is now strenuous. Every time I eat out, I am so scared that I was exposed to gluten and will get sick. Most people are understanding, but it’s hard to feel different and have to ask for special treatment…..
  • Hi the most challenging aspect prior to disgnosis was the neurological impact – the brain fog, dizziness, loss of concentration and profound fatigue – I truly thought I was dementing and didn’t feel safe to drive at times. Since diagnosis 2.5 years ago it’s been trying to heal and normalize my titres to no avail even though I am fanatic about no gluten or cross contamination. Now diagnosed as refractory celiac. Neurologically much better but travelling and social events at others’ homes or restaurants are challenging. Oh well life sucks sometimes and then you just move forward and learn to work with what you have.
  • The anxiety of going out to eat.
  • worrying about being able to eat when on business trips where it is harder to control where dinners are held. Bringing snacks or eating before/after draws attention from employees/prospective employees & takes the conversation away from my qualifications also, having celiac treated like a fad weight loss diet instead of a serious autoimmune disease.
  • Social situations
  • trusting the restaurant staff when they say “It’s gluten-free.”
  • Feeling sick from most gf food. I’ve been sick since I was a baby now I’m 33 and found out only two years ago I had Celiacs. Now I’m on a strict diet the rest of my life of paleo. Everything bloats me nauseates me and inflamed me. I don’t bother eating out or at anyone’s house.
  • Your food allergies becoming the topic of conversation at a dinner party because you can not eat most of the food. Then the host feels bad and it’s not their fault. Also my food allergies are the least interesting attribute of mine, but I feel that’s what most people know about me.
  • Feeling like an outcast at a cookout or dinner. I haven’t met many people with sensitivities to gluten or celiac disease in my community and I sometimes feel that I am looked at as strange and/or antisocial.
  • The way it ravished my body and took me from a size 16 to a size 1.. Depression hit me so hard, I couldn’t believe how much weight I lost.
  • I am 43 and have had celiac for 7 years. Sometimes it still amazes me how I can feel left out or sorry for myself bc I can’t just eat anything I want.
  • My 7 year old son was recently diagnosed. Thanks for doing this post. It’s so helpful to read other’s thoughts to understand what he is going through.
  • The social aspect of food is certainly challenging and heart breaking to see my four year old son feel left out. But, one of the most challenging parts for me is the panic and PTSD that I have when he complains about a tummy ache, leg/joint pain, or has loose stool. I automatically question if he got gluten and then often unnecessarily stress about where he potentially had cross contamination and what implications it has for him. I wish I could take it all away and go through it myself instead.
  • Having people say: is a little contamination really gonna matter? What’s actually going to happen?
  • Feeling “off” with fatigue and stomach ache often.
  • When people think I’m shady, not honest or flaky when I have to cancel plans, am running late, have to reschedule appointments or plans, or can’t show last minute because of the health issues. How many people REALLY want full details of what’s going on in the bathroom when my body is damaged and fighting itself?  It’s had a huge effect on my social life and work. Even when people know about health issues, many are still judgmental and completely lacking in tolerance, patience, understanding and sympathy for the daily challenges we face. It’s frustrating.
  • Challenges smelling freshly cooked bread and not eating it! Also having people and family around me trying to accommodate me….I don’t like that.i don’t want to be “that person” I can handle my gluten allergy just find.
  • as a 15 year old , the most challenging aspect of having celiacs is feeling left out at parties when there is cake or pizza. i also dislike having to ask places like Chipotle to change their gloves/utensils because i feel like i annoy them. The last thing that i feel is challenging is getting people to understand what celiacs is. Many people think i’m just going on a “common white girl gluten free diet” when in reality i have no choice but to be gluten free !
  • Being the one in total control of protecting my invisible insides from the scary invisible things in the foods that I eat. No pills, no prescriptions or creams, no antibiotics or bandages; just the best attempt to defend and protect my innards every single time I put something in my mouth.
  • Being in college and having celiac is hard. Sometimes I feel like I exclude myself from attending social events, but it’s the fear of getting sick that hold me back. Then there is also all the weird stares or mumbles about why I’m not eating or looking up things on my phone to see if it’s safe to eat or drink.
  • Having a child with celiac and seeing her struggle is the hardest thing. Trying not make it a big deal to bring attention to her, but making it a big enough deal that she can one day advocate for herself.
  • Dating is the most challenging thing. Deciding at what point to do I drop the celiac bomb on them and trying to make it so they don’t think I’m a freak. By the way… I can’t kiss you if you just had gluten…
  • Attending social events hands down is the hardest thing.
  • My family and friends think I’m crazy. I swear If I hear “one bite won’t kill you” again, I’m going to scream!
  • I worry about the future for my celiac child and the fear that he will develop another illness because he doesn’t take his gluten free diet serious.
  • Traveling. Now I have to plan out my entire tip based off where I can eat and pray I don’t get sick  and it ruins the trip.
  • How inaccessible the world is post diagnosis. Restaurants are cut down to dedicated GF places, can’t go to the library without kids eating crackers over the toys creating a hazard for my daughter (and upsetting her because the library is a no food zone, it’s supposed to be a guaranteed safe spot for her) and how the majority of people are not understanding and make things more difficult than needed. Like if we are at the store and my kids are offered a cookie. No thanks, we can’t have that she’s a celiac. Turns into oh come on it’s just a cookie! Like exactly, it will make my daughter (or me but I wasn’t offered one 😂 ) vomit all night while crying over cramps. It’s not just one cookie.
  • Not being able to eat a family gatherings and having to apologize that I have to bring my own “special” food. Gluten free restaurants unless that’s all they are do not train their employees about cross contamination. And lastly, thanks in part to Hollywood and everyone jumping on the gluten free diet bandwagon, most people think it’s a fad or joke. They don’t get the rashes, the sickness for days after contamination, the bad memory and the other joys of illness. So sad.
  • Eating out, traveling with friends. Trying to get people to understand yes, it is important ALWAYS to eat gluten free.
  • For me it’s the social aspect. I’ve been gluten free over 5 years now & am totally used to it & pretty comfortable with it but it still makes other people uncomfortable. 😢
  • Trying to avoid a celiac flare up -!: Plus, to maintain a Gluten Free Diet 100 percent of my life.😓😓
  • Traveling 😢 I get so stressed about it.
  • Trying to maintain a Gluten Free Diet everyday of my life. Hardest part is eating out and traveling. 😓😓
  • Eating outside of our home….so basically all social gatherings & traveling are so hard.
  • Not being able to enjoy so many different restaurants with friends and family. I can only eat at a few places, since there aren’t a lot of restaurants that are trained to handle cross-contamination. And not everyone understands why I can’t eat at every place that has a gluten free menu… they don’t understand the cross-contamination. I miss that freedom I used to have.
  • As many people on here have said, the social aspect is probably most challenging for me. I was diagnosed seven years ago and fortunately pretty quickly developed the “if you can’t be respectful about my autoimmune disease, then I don’t need you in my life” mindset, which has served me well. My family, friends, and husband are extremely caring fortunately, but I hate awkward situations like work lunches. I don’t know, I think I’m very lucky to have such a great support system.
  • The invisible illness part of it and the “oh but you don’t look sick” comments when in reality we can be struggling with pain, rashes, hair loss, etc. Also, the lack of knowledge amongst the conventional community and how they say follow a gluten free diet and you’ll be fine, without discussing or testing other factors such as nutritional deficiencies.
  • Having to explain my illness and dietary restrictions to everyone I eat with, everyday, for the rest of my life. A meal is never just a meal. It’s humiliating, and it’s usually just easier to eat by myself. Also, being a burden to my loved ones – restaurant trips, hotels, holiday meals… they all have to be altered if I’m going to attend. Almost seven years in and the social piece has yet to get any easier. And the complications that come from having lived undiagnosed for years. Technically my Celiac is “under control”, but I still have complications and issues almost everyday.
  • Mine echos so many others. The social aspect is definitely the hardest. I have always hated getting attention and it seems that my disease and eating restrictions are always talked about when we are around other people while there is food involved. I hate it!! But I’ve learned to just change the subject and not let it get to me.
  • Traveling. There are so many great resources and apps but I was a restaurant manager and when I asked about the a gluten free menu the company I worked for didn’t have one. When I asked why I was told “I don’t know why” when I called corporate I found out nobody had taken the time to make one. I spent hours and days creating researching all the food we used. I made a gluten free menu. It was hard work but not impossible. Just took time. I know a lot of places don’t take that time. So while I am hoping my favorite hometown restaurant has a gluten free menu when I visit they usually don’t. Only big corporate places. I don’t even know what grocery stores in the area I’m visiting have what. It’s just a horrible experience.
  • Being taken seriously at social events. My boyfriends family always makes sure to cook a meal for me and keeps it in a separate dish if I’m working and late for dinner but Easter weekend another family member said “she’s not here so eff her” and threw my plate of food into the garbage and poured the rest of the uncooked meal into the pot with everyone else’s. The next day I was glutened and knew within 5 minutes (queasy and a headache) and that knocked the cousin down a peg about how serious it is to keep my meals separate. I feel like I’m inconveniencing my family and friends every time we try to plan a meal out where I’m not able to control how my food is prepared and have to ask a million questions about allergy procedures. I was so tired of people assuming I’m just on a diet for fun that I got a medical alert bracelet that says in bold letters ‘Celiac Disease – NO GLUTEN’.
  • Having to eat out at the same four places because you know they are gluten free and understand the cross contamination risks. Feeling stupid everytime you have to say “and that’s definitely gluten free” and they look at you like your with all those pain on the arse customers who don’t know what gluten even is but are on the latest diet. Basically making every social interaction about your illness. It’s embarassing.
  • It’s so bad to go into a restaurant and have the server roll their eyes. Obviously not someone who has had the side effects of gluten. I was diagnosed 16 years ago!
  • Living with the other illnesses that can come after your diagnosis!
  • Trying to ensure that every single item that enters or touches my body is gluten free. Peopke are amazed when I tell them there is gluten in some shampoos, make up, lotions, and deodorants. And getting pharmacy meds filled is always a source of stress for me. New meds and new manufacturers make it quite hard at times to ensure it’s gluten free. Had a pharmacist tell me a few months back that the drug had maltodextrin in it, but unless I was very sensitive it wouldn’t bother me. My response was a five minute lecture to him on what celiac truly was and why this could indeed hurt me!
  • The social aspect of having Celiac disease – eating at peoples houses is the most difficult. They try but don’t realize that gluten can be hidden in so many things. And no – “I can’t just pick out the part that contains gluten.” I have been really fortunate at the restaurants that I choose to go to but find myself avoiding impromptu meals out or day trips with friends as I have some anxiety about being a “nuisance or inconvenience” and also not being caught out and not be able to eat anything. Lastly, I think the anxiety that often comes with celiac isn’t spoken about enough. I felt physically healthy after going gluten-free but have had to learn how to deal with a whole new self-care part of my life revolving around anxiety.
  • Emergency bathroom trips. The worst!
  • The lose of spontaneity & freedom. Outings/socializing/traveling …. involves planning, orchestrating….. and the stress of a GI assault and …. not being home to deal with it!
  • …avoiding cross contamination when eating anywhere other than at home. ….trusting other people to prepare food for my Coeliac son.
  • Eating out.
  • That the more I learn, the more I realize how much others do not know and how huge of a risk it is to trust others with anything related to food.
  • Explaining to well mean individuals that “No, I can’t have just a bite. Or – yes, “eating it even once will make me sick and is not good for me.” So many people confuse (or don’t understand) the long term effects of Celiac Disease with the effects on a person with gluten intolerance.
  • Like others eating out at friends or a restaurant and the increasing impact of even incidental cross-contamination. The longer I have Celiac the worse ANY exposure hits me and the longer it takes to recover. Day 5 after eating a so-called clean plain green salad with no dressing in a restaurant- still feeling so rotten with brain fog and all the usual other nasty gut stuff. Discouraging and challenging- thanks for the opportunity to share.
  • Honestly, I have friends who just don’t get it. They say things like,” Can’t you just eat around the crust ?”, or “Eating a little piece of pasta will not hurt you.” But they don’t have the migraines that I get from foods that are supposed to be GF, prepared by friends or a restaurant.
  • As a celiac the biggest challenge are invitations to friends homes for dinner. I have to take a compete meal, otherwise I will get glutened.
    Even if they try to serve a GF meal, gluten is in their spices, salt, embedded in their cooking utensils.

After reading everyone’s responses it made me realize that although we all struggle in different ways, what we do have in common is that we all have challenges when it comes to living with celiac. Sometimes when I stress about certain things relating to this disease, I think “is it in my head?.. No one seems to get it.”…. but after seeing everyone’s responses it helps me feel that I’m not alone!

I want to truly thank everyone who contributed to this list and opened up because I know that can be scary sometimes!

Stay tuned for parts 2-4 throughout the month of May!

 

 

 

 

13 comments

  1. Laura says:

    Thank you for doing this series. I was diagnosed with celiac disease a year ago and I identify with so many of the above comments. They highlight the necessity of Celiac Awareness Month!

  2. Carol says:

    Thank you for this series .I have been diagnosed since2006.my friends all understand and are very supportive,however, even medical facilities are not always careful,some are even proud of being ignorant and fluff off the diagnosis and serve food with gluten This happened to me in re-Hab. After surgery.I suffered so much.Now I have found out after upper endoscopes. That I have a rare complication of celiac disease,a sloughing esophagus.After some surgical intervention,I still have this condition,but do not continuously regurgitate.Everyone has”something” ,so why cannot we be kind and respectful to one another?

    • msmodify says:

      That is so frustrating about the medical community. I agree, everyone should be kind and respectful always!

  3. Linda says:

    Thank you for all you do in helping others through your blog & social media! You are a breath of fresh air in this (oft times) gloomy and lonely struggle!

  4. Rebecca Jo says:

    Sounds like there is a total bonding of that feeling of being left out or alone or no one understanding. That is so hard… especially when food & dinners are a big social aspect of life.

  5. jennifer says:

    I agress it is very lonely!! I wish i had gf friends just one person who completely gets it!! And i live in a small town sonits harder but i love going to the city it makes me feel a little more normal

    • msmodify says:

      I agree with you Jennifer! I wish I had a friend with celiac too, but the power of the internet and social media is incredible… I’ve met so many wonderful people that I now consider friends that I can relate to! Feel free to email me anytime! (kristina@msmodify.com)

  6. Zoe says:

    Thank you to everyone who has contributed, I’ve been gluten free for two years now and it’s turned my life around. I can really identify with what everyone says about life pre-diagnosis. I thought I was doing really well until I went into town looking for a Mother’s Day present. There were some beautifully decorated cup cakes in town and it brought tears to my eyes knowing that I couldn’t get them for my mum as she is also gluten intolerant so neither of us could eat them.

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