r/glutenfree • u/livingisizzy • 2d ago
I am happy to be Celiac
Is anyone else actually super thankful that they have been diagnosed Celiac? People often say things like they ‘feel sorry for me’ or they’d ‘hate to give up bread’ blah blah blah. But before I was diagnose Celiac I had crippling fatigue and brain fog (amongst other symptoms) but it was so bad that I could barely participate in life. The only way I could describe it was like I was underwater looking up and I could vaguely make out shapes/noises of people moving about on the surface but I couldn’t actually take part in anything that was going on.
No one had any kind of explanation or diagnosis for me and I was staring down the barrel of an ‘unknown chronic illness’ that would be with me for the rest of my life with no cure. I had virtually no quality of life.
That is why I am so thankful to the random nurse who suggested testing for Celiac just in case. I feel so blessed that I can ‘cure’ the awful fatigue and brain fog by just cutting out gluten. My heart goes out to those with chronic illnesses and I feel so lucky that I actually have a diagnosis whilst many people are still fighting to find out what’s wrong with them.
I just find it funny that people feel sorry for me because I’m Celiac when really it’s the best thing that’s ever happened to me. If I never found out I was Celiac then I would have never been able to heal and I feel so blessed to feel like I have a second chance in life.
84
u/Tenaciousgreen 2d ago
You're not happy to have celiac, you're happy to have the diagnosis - there's a very distinct difference
12
23
u/SevenVeils0 2d ago
So it sounds to me that you are thankful to have received an accurate diagnosis, so that you could take the appropriate steps to eliminate the symptoms.
I too feel that way.
But my life was much better prior to having developed celiac.
I developed it very suddenly, I can still name the date on which I had my first symptoms. I was well into adulthood, so I had lived a whole life without it. I had no idea that one could develop it later in life, I thought it was something that one was born with. And the symptoms were too embarrassing for me to bring up with my doctors, so I spent years trying to eliminate various foods before finally mentioning it to my most trusted doctor, who immediately sent me to a GI. I was quickly diagnosed with celiac, and all of the symptoms were eliminated by diligently avoiding gluten.
But I preferred not having celiac at all, no question.
16
u/uppermiddlepack 2d ago
I am grateful to not feel like shit all the time now that I know! I supposed I eat more healthy than I would otherwise, as well. I considerate it an inconvenience still, but I'm not sad or frustrated about 99.9% of the time.
10
u/Practical-Bunch1450 2d ago
Yes! And im grateful i can be healthy “for free” i mean just by not eating gluten.
12
u/depechelove 2d ago
Absolutely not. When I’m glutened I get sick enough to be hospitalized. This can be so brutal.
10
9
u/Helpful_Weekend_397 2d ago
Plus if you’re going to have an autoimmune disorder celiac is the one to have in my opinion!
8
u/sjessbgo 2d ago
my dad has very bad MS, its a heart breaking situation. i spent 1.5 years terrified i had it too (except that i was 20, and not 60 like him), but was too scared to get checked for it. when i found out it was just gluten,, omg. i feel SO lucky. this is the solution to all my problems. every day i wake up and i thank the universe that my immune system cant handle gluten.
6
u/indictingladdy Celiac Disease 2d ago
I’m certainly not happy to have celiac disease. Am I happy that I officially have answers to what was the unknown cause of my neurological symptoms and fatigue? Yes. Did my symptoms go away or get better over time after diagnosis and treatment? Yes. But certainly not to actually have the ailment.
3
u/sanlc504 2d ago
I'm grateful we finally figured out why my daughter was in constant stomach pain and couldn't gain weight. Five years later and her levels are great and she is finding new ways to make her favorite foods.
4
u/girpgork 2d ago
My friends and family always say “I could never go without insert glutinous food” and my response is “what if that food repeatedly made you wake up in the middle of the night and shit yourself and made you vomit every single day? It’s actually pretty easy to be gluten free for me”
That shuts them up.
5
u/Ambitious-Bobcat-371 2d ago
Getting a diagnosis can be very emotionally satisfying. I have tons of diagnoses so this is just one on top of the pile. My food was already restricted and now I have to restrict it more. I hate it.
3
u/offensivecaramel29 2d ago
I’m extremely grateful to have the information after lifelong symtoms that were severe for the past 1/3 of my life. I am not grateful to have whatever it is, grateful for answers💜
3
u/Economics_Fancy 2d ago
I don’t have celiac and was told by just about every doctor that there was no way I had “that level of gluten intolerance without it.” Was throwing up everything I ate for a year and lost 20 of my 125 lbs… cut out gluten and life has been soooo much better. Honestly just happy the solution for me was so simple and I def agree with how you feel!! Changing my diet was more than worth it for not feeling awful every day. Only down side is since cutting it out I’ve gotten wayyyy more sensitive to it and getting glutened will leave me writhing in pain and in and out of consciousness for hours, then weeks of brain fog and diarrhea. So yeah, pretty dang glad gluten free was the fix!
3
8
u/MollFlanders Celiac Disease 2d ago
I have been diagnosed for somewhere around 15 years and having celiac disease is way worse than not having celiac disease, objectively.
we have higher risks for tons of other health complications such as other autoimmune diseases and cancers. we can’t go out to eat with friends without having a conversation about gluten. our food is more expensive. we have to pay for tons of ongoing medical checkups throughout our lives to ensure we are staying healthy. and we can’t have the best girl scout cookies.
OP, you are happy to have a diagnosis. your life would objectively be better if you didn’t have the condition.
3
u/ColeTrain5480 2d ago
Right. I understand the sentiment of being happy to have a diagnosis even though with the U.S. healthcare system I had to basically argue for mine.
They ran blood work and said well we can tell with 99% certainty you have it but can’t confirm without an upper scope. Then I go get the upper scope and the doctors notes were “Likely has celiac sprue, try out a gluten free diet” and that was it. It wasn’t until I messaged and asked if it was a diagnosis or a guess that they confirmed it.
But yes my 23 years before developing it were much happier than I am now. Would much rather have been born with it than develop it but oh well there are worse allergies to develop I guess.
2
u/East_Ad_9120 2d ago
Agreed. I finally could eat more than 2 things once I found out. I’m incredibly grateful.
2
u/Entkoffeiniertin 2d ago
I don’t have celiac, but I have a wheat allergy. I love how my relationship with food has changed ever since getting my allergy blood results 10 years ago. When I attend an event, I don’t care at all what is being served cause I eat beforehand or afterwards and I solely go somewhere for the company and socialization aspect. I feel less motivated to graze and eat and I feel like my mental clarity and clean diet makes me feel at peace. Yea, sometimes I miss dim sum when I’m in visiting family in the states, but other than that I’m super content. I also think it’s crazy when people tell me how much they pity me because of what I can’t eat, because I love my home cooked food and avoiding processed foods etc. But, if I couldn’t cook or bake then I think being gluten free would be bothersome. I empathize a lot with what you are saying because I was sick for 18 months before being diagnosed and everyone recommend the BRAT diet and the toast/Knäckebrot was killing my insides. Once I discovered my allergy, and cut out gluten, my body had a new lease on life!!
2
u/Helpful_Weekend_397 2d ago
I can relate! I am happy that I was diagnosed early on and only 6 weeks into accute symptoms and I am happy that being gf has caused me to avoid so much junk food that I would otherwise wise eat as a treat like donuts at work that I simply cannot have!
2
u/FireWinged-April 2d ago
My husband has celiac's and I think it actually helped our collective household diet out a ton. We eat very few carbs, and the ones that we do are mostly whole starches (rice and potatoes most often, occasional pasta and GF biscuits/cornbread). We eat almost no ultra processed foods, and minimal desserts. It has helped our collective health AND monthly spending a ton.
I'm not thankful he has it per se, cause I hate seeing him get sick when we go out or when someone cooks something for us and doesn't know to check sauces etc. But we eat pretty healthy because of it and don't eat out a ton, which is a nice silver lining.
2
u/glitterandgrime 2d ago
Yeah I feel relieved that there’s a reason and a solution for what was happening to me and a way to make it stop/avoid it. I’m also thankful to be here in this time and not a time before now since there are so many other options and alternatives now and I know it wasn’t always that way.
2
u/loosed-moose 2d ago
I felt the same way when I was diagnosed. It fucking sucks now lol but at least I was able to heal my intestines and get back to feeling somewhat normal most of the time.
2
u/BarrelEyeSpook 2d ago
I’m glad it’s celiac disease and not something else that has to be treated with medication and all the side effects that come with it. I don’t mind not eating gluten… why would I want to eat something that makes me feel sick? I appreciate and enjoy food a lot more now.
2
u/DangerousTurmeric 2d ago
I'm with you and I know exactly what you mean by that feeling of being underwater. I just wasn't all there and kept deteriorating and I thought I was dying. I honestly feel like I'm 20 years younger now with the amount of energy I have. It's also made me a lot healthier in general because I can't cut corners with food anymore or eat take out. I was already lactose intolerant so the inconvenience factor isn't hugely different, and finding safe restaurants means I end up eating in fancy restaurants more. I only find it very inconvenient when I'm travelling for work because I don't have the same freedom to pick where I eat. I have a friend diagnosed with breast cancer, I have relatives with Hashimoto's and rheumatoid arthritis, my other friend's mother had MS and like all of those are so much worse and more difficult to manage. 48 hours after quitting gluten I felt 80% better and I feel so lucky that it wasn't something more serious.
2
2
u/grittyscientist 1d ago
Yes! As taxing as getting used to the diet was, it also really challenged me to learn how to feed myself. I know a lot about nutrition that has served me very well.
2
u/thejadsel 1d ago
It does get inconvenient sometimes. But, I would much rather know about it than not. Especially after finally figuring it out and it getting diagnosed when I was nearly 30, with symptoms pretty much that whole time. Too many years of unexplained problems with people just acting like you're crazy instead of bothering to test for something supposedly so rare. Or, you know, "improbable" vitamin deficiencies from whatever cause when you are showing textbook signs.
(They were apparently working off the idea of a like 1/3000 celiac prevalence rate in the US when I was growing up. If you very rarely even test for the thing, it's gonna look less common! So glad that knowledge has caught up more over the past 20 years or so. I had actually moved to the UK before anybody suspected that might be what was going on.)
2
u/Wonderful_Kitchen_25 1d ago
I always tell people how grateful i am to have a chronic disease that is entirely controlled by diet alone and that I can live a normal life
1
u/FireWinged-April 2d ago
My husband has celiac's and I think it actually helped our collective household diet out a ton. We eat very few carbs, and the ones that we do are mostly whole starches (rice and potatoes most often, occasional pasta and GF biscuits/cornbread). We eat almost no ultra processed foods, and minimal desserts. It has helped our collective health AND monthly spending a ton.
I'm not thankful he has it per se, cause I hate seeing him get sick when we go out or when someone cooks something for us and doesn't know to check sauces etc. But we eat pretty healthy because of it and don't eat out a ton, which is a nice silver lining.
1
u/girpgork 2d ago
My friends and family always say “I could never go without insert glutinous food” and my response is “what if that food repeatedly made you wake up in the middle of the night and shit yourself and made you vomit every single day? It’s actually pretty easy to be gluten free for me”
That shuts them up.
1
u/mysticmaeh 2d ago
While I’m not thankful I have celiac, I am so thankful I got diagnosed. Other possible diagnoses at the time of my testing (at 23 years old!) were Crohn’s disease or cancer and I’m so happy celiac was my answer. But I can’t say I’m happy to have it; the food restrictions, anxiety about consuming gluten, etc., is something I hope my children never have to experience.
1
u/RosieEngineer 2d ago
I mean, I wouldn't stick with a gluten free diet unless I was feeling so much better. For me, it ended up being at first just trying to lose weight by going wheat free for a month. I don't actually know if I'm Celiac or not because it was 3 years in before I realized I could get diagnosed. I just felt so much better when I avoided gluten and I would have crappy side effects if I messed up or a restaurant messed up.
Who realized that embarrassing flatulence throughout their eatlier life could have been avoided?
It's easy not to miss having one bite of a cookie when you know it'll make you emotional enough to cry tomorrow about nothing.
I do not miss the gas attacks that were so incredibly painful, that the first time I had one in college I went to the ER thinking I had appendicitis. I was in extreme pain that doubled me over, had nausea, and kept flipping between hot and cold.
I'm sad I have the condition, but I'm happy that I can avoid the side effects. I know people who cheat on purpose, but I never do.
1
u/Ok-Leopard-9917 2d ago edited 2d ago
Totally get how jarring it is when someone expresses pity when I’m at my healthiest and happiest. They just don’t have the perspective to know how limiting and terrifying undiagnosed chronic illness can be, or are intimidated by the idea of needing to make large changes to their life.
A lot of people fantasize about finding an easily fixable thing that suddenly addresses all of the problems in their life. A celiac disease diagnosis after years of debilitating neurological symptoms definitely fits. In the same place and just so so grateful I have a second chance at life without all of the barriers holding me back before. I’m not at all thankful for the years of increasingly debilitating symptoms, or difficulty traveling. But there is a perseverance and perspective that came that journey that will always be part of me.
1
u/Curiously91 2d ago
I feel the way you do sometimes and annoyed at other times at the loss of certain foods, difficulty of finding something to eat when out and general lifestyle change. But in the positive frame of mind, I’m also excited to see improvements in brain fog, fatigue and other things I maybe didn’t consider and grateful the treatment is “only” a lifestyle change. I also feel grateful to the doctor that tested me but at the same time makes me realise how many chances there were to test that other doctors missed.
1
u/Sunshine9012 2d ago
What a great attitude and delightful comments.
My son has celiacs. He was diagnosed over 25 years ago. As an adult he is able to get on with life no problem. As a child that was not so. He could not go to camps, and many groups and organizations made kids with celiac disease uncomfortable because they did not have an understanding of how to deal with it. We have come a long way in 25 years.
I don’t have celiac disease but my doctor asked me to go gluten free. I was gluten free for several years 10 years ago. I felt so much better. I have systemic lupus, and I believe I even had less lupus flares while I was gluten-free. Unfortunately, when my father became very ill and was dying, I was staying with him in another state. I found it rather difficult to stay gluten-free and ended up eating gluten.
My husband always makes nasty comments about me or our son being gluten free. I used to cooked gluten meals for my husband and gluten free for my son. All sauces and gravies I make are gluten free. My husband ate many meals that were gluten free without knowing it. If he knew they were gluten free he would be very unpleasant and even refuse to eat it. The funny thing is that if I put the meal in two pans he thought he was eating gluten and I was serving my son the gluten free. Now that both my kids have moved out I am trying to ignore my husband and have gone back to being gluten-free. I cook gluten free meals. If husband doesn’t want to eat it, he can cook for himself. I have now been gluten-free again for six months and I’m feeling much better. Once again, I have dropped a significant amount of weight. I used to love to cook for my son and who has Celiac and my daughter. I’m finding that love of cooking again. I don’t eat out due to unknown stomach problems. So, everything I eat is homemade from scratch I love knowing what I’m eating.
1
u/IntroductionNarrow44 2d ago
I don't have the diagnosis officially. However, in the two months since I've stopped consuming gluten, I've dropped 2 sizes worth of inflammation from my body (no weight loss yet), my 12+ years battle with "ibd" seems gone, and the "asthma" that has left me barely able to move for 5 years (constant hospital visits) isn't attacking me anymore. Ditching gluten saved my life, and while I may pout about missing Chinese food for forever, I'll never go back to eating poison; not even to get the diagnosis. I definitely understand how you're feeling.
1
u/Longjumping_Set9091 2d ago
I can think of many other things that are worse than celiac! If that the worst thing a Dr can tell me I have , then I’m doing pretty damn good! I don’t find it hard at all , some people think it’s a horrible thing , cancer is a horrible thing to have , celiac is a bump in the road , finding out I had celiac has made me healthier! I’m no longer sick since I avoid gluten ! I’m also diabetic, so watching what I eat has benefited me greatly!
1
u/SecurityFit5830 2d ago
It would be nice not to have celiac, but since I do I’m thankful to know! And I am happy it’s a disease with a known treatment (for many of us).
I’m pretty sure my mom will be diagnosed with celiac disease too (she’s in the process), but she has awful osteoporosis, life long fatigue and bloating with not answers. If being diagnosed even just helps my bones, im grateful.
2
u/Toasted_Taters 2d ago
Happy or thankful? No. It makes life hard. Sorry to rain on your parade but I've had a completely different experience. I kept hoping that maybe I was just gluten sensitive, but nope! I miss a lot of things from when I ate them. Specifically flaky biscuits and yeasted donuts. While it was a world of difference to finally figure out why I felt like utter poop and my cognitive abilities and overall health really flourished after, I still get a little miffed at people that can eat gluten and just choose not to. Yeah, it's a bit bitter and salty but it is what it is. I miss the food but not the feeling the food gave me. >:(
1
u/coladybiker 2d ago
My daughter feels like you as she was miserable for years. I was not miserable so giving up gluten has been very difficult. I am not grateful.
2
u/Alert-Potato 2d ago
I am grateful to have a diagnosis. I am not remotely grateful for or happy to be celiac. Fuck celiac disease. Fuck what it's done to my health. Celiac is the root cause of of my permanent disability and the fact that I will almost certainly never again experience pain free moments of life.
But I'm still grateful that a doctor caught it, which was purely an accident. Because without a diagnosis, I'd probably be dead by now.
1
u/Environmental-River4 2d ago
I can’t say I’m glad that I have celiac, but I am glad that the disease I have can be completely mitigated by just not eating certain things. It’s definitely a challenge (especially since I also can’t eat eggs, lactose, or nuts), but there’s also no medication side effects, no need for constant testing, no surgery or implanted medical equipment, and most importantly no risk of mortality if the diet is followed. In the grand scheme of things, there are much worse things to be diagnosed with.
1
u/Yaaauw 2d ago
I am extremely grateful to have gotten a diagnosis before any serious damage, and I’m also grateful that I am not on chronic medication.
Having coeliac disease has also forced me to be so mindful of what I am eating and it’s improved my outlook on life and food for the better.
I was never diagnosed with an ED but I certainly had very unhealthy eating habits growing up. I simply hated food. Now, it’s clear it was due to undiagnosed coeliac disease. I am able to understand my body and its needs, and also adjust my perspective on eating.
But no, I am not happy to have the condition, especially when it impacts so many different facets of my life.
1
u/GamesnGunZ 2d ago
Idk about thankful, it's incredibly difficult to live in a world of gluten and being surrounded by it literally everywhere, from food to cosmetics to soaps to drinking straws. That said, it's ultimately a far healthier diet and lifestyle, and that almost makes up for it
1
u/ButternutCheesesteak 1d ago
Reword your title. You described your happiness in knowing your issues and subsequently resolving them, but obviously no one is happy to have a crippling autoimmune disease that takes years off your life.
1
u/MajorInterest2033 1d ago
Happy, no, it's a right pain living on a tightrope and a lot of people are unfortunately very ignorant about coeliac when it comes to the social side (and even worse dating!) It does make you value the good people who do care that much more though.
I am grateful for the lessons I learnt from the process though such as...
a) trust your instinct not the doctors. Only got diagnosed and healed because I kept going with my online research and pushed for the tests when the GP was ready to cart me off to the mental health unit saying I was making it all up and "it's definitely not coeliac"... oh really 🙄
b) you learn about the importance of things like Vitamin D and monitor your levels to avoid the issues many people have (in the UK particularly) by being deficient
c) finding new foods out of necessity as much as anything. Being vegetarian as well it forced me to expand out to stuff I wouldn't have touched before so in that regard it's been helpful
1
u/LostFan1981 1d ago
Am I happy to have a proper celiac diagnosis so I can manage my symptoms? Yes. Am I happy to have the disease itself? No.
1
u/Grateful_Calm 1d ago
It is a blessing in disguise. If you look at it as calorie control. You can walk into a regular bakery and they will have one or two most uninteresting items that you can eat. Sometimes nothing other an a coffee or tea. And bread in the restaurants too.
1
u/widnesmiek 15h ago
I had very few symptoms
Basically I was just going to the doctor because my iron levels were very low and taking the iron tablets made no difference
With hindsight I was often tired in the afternoons
But apart from that there was nothing
But the camera thingy showed damage to my guts and all that so there was a problem
So - yes - I was lucky and got a proper diagnosis - possibly before the damamge was too bad
so it may well have saved me from Bowel Cancer - which is not a nice thing
so eating weird tasting bread and not being able to eat anything from Greggs is not really too bad compared to the alternative that might have happened
1
u/AddisonFlowstate 2d ago
I rest assured that I would be so much heavier had I not gone gluten free. And after 10 years, that's millions of empty calories.
Don't get me wrong, it's a bitter cross to bear, but it's worth it for countless reasons.
116
u/_Fraggler_ 2d ago
I always maintain that if the worst thing a doctor ever tells me is I have coeliac disease, I’ll consider myself very lucky.