When I first started this blog six months ago, I made a promise to myself that I would not get caught in the trap of complaining incessantly about having celiac disease.
I didn’t want to write it and nobody wants to read it.
But at the same time, I did not want it to be a “celiac saved me and going gluten free is wonderful” blog either. Because that’s simply not how I feel.
Up to this point, I THINK I’ve done a pretty good job dealing with the realities of having celiac disease without being a downer.
But sometimes…man…sometimes it really just sucks having this disease.
I’ve only been diagnosed four years, but I sometimes forget what it’s like to feel…I don’t know…I guess normal.
A few instances in the past few days have really thrown me off course.
1) Right now…I feel like hell. My stomach feels like it wants to burst out of my body (think the “Alien” scene), I’m absolutely exhausted, my head is pounding and I can’t concentrate. It’s 5:30 and all I want to do is crawl into bed. Paints a pretty picture, doesn’t it?
2) Last night…I just wanted a quick bite before bed and as everyone else in the family just grabbed this or that to their delight, I was stuck. I hadn’t prepared anything. I didn’t want to nosh on crap. And so I went to bed hungry…and bitter.
3) Two nights ago…I was at a friend’s house where I’ve been many, many times. The host is wonderful to me and she always makes sure I am well taken care of. So I’ve pretty much gotten to know what I can and can’t have at her house. She had some shrimp out with cocktail sauce. In the past, she has always used McCormick’s cocktail sauce, which is gluten free. I assumed that’s what was in the bowl. So I dipped and downed a shrimp.
Celiac rule #1…ALWAYS ASK.
I didn’t and it turned out it wasn’t McCormick’s but a premade store brand. No idea what was in it.
100% my fault for 1) not waiting until she explained what’s safe for me (which she always does); and 2) not verifying before I ate it. Just lazy and stupid and I took it for granted.
But sometimes, you just don’t want to deal with it. You don’t want to be a drag on other people. You just don’t want to TALK about it.
Was I glutened? I have no idea. And frankly, at this point in time, I don’t really give a sh*t.
Welcome to a celiac’s life.
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Thanks for letting me vent. I feel better already.
If you need to vent, leave a comment below and spew away.It just might help and it certainly can’t hurt.
Oh…and by the way, when I’m feeling this lousy, here’s my regimen:
A few days after my “Remove Gluten, Add Passion” post (the really positive one haha), I had a bad day. I was out of my normal routine and really, really, really, did not feel like messing with where or how I was going to get food since I wasn’t at home and in control of everything. I was very frustrated and annoyed and just wanted one day where I didn’t have to think about or plan how I was going to eat. So, I feel your pain. We all have those days, I think. I just hope my good days outnumber my bad days. Hope you are feeling better soon!
Thanks Janelle. Wouldn’t it be nice if we could just take a day off from celiac just once in awhile?
I am in all of life, a realist. I am not an over the top happy celiac. I am a realistic celiac. Some days are better than others. I’m only 6 months into this and for me it is getting easier now. I’ve finally gone back to eating predominantly vegetarian- something I gave up when I was first diagnosed. I could only handle so much by way of food restriction at one time. It feels good to be back pursuing my goals however it creates conflict because I live with a carnivore. So much stress surrounding food :/ My mother is coming to visit soon for the first time since my diagnosis. She’s worried about what she’ll eat. Haha- would it be wrong to tell her to get a grip? LOL
She’s worried about what SHE’LL eat? That’s funny.
How come you didn’t put a picture of a Tito’s bottle next to your vitamins if you are showing your health regimen???
Ssshhhhhh 🙂
I’m usually a happy-go-lucky person until I’ve been glutened or feel awful without explanation. I hate trying to trace my steps to figure out what made me sick. The brain fog is usually too thick at that point to figure anything out!! I hope you feel better Dude; you’ve had a tough time of it the last month or so.
Thanks Jody. Much obliged.
I am totally there with you. I try to stay positive but sometimes it’s just not there. Yesterday I had one of those … Didn’t plan my lunch days. I was working back to back therapy sessions with lots of driving. Passing up fast food after fast food with my belly growling just gets me in a pissy mood. I was bad that night and had one of the premade Blue Bell ice cream cups – vanilla. That was my pity party for the day and I paid the next morning. I would love to be normal for a day.
Oh, and I don’t let friends feed me …I don’t trust anyone….and of course that brings me to another pity party moment! 🙂
I don’t think one normal day is too much to ask from the gluten gods.
I hear ya. I had a day last week where something got me, and I STILL have no idea what it was. You try to be careful, then, boom. Gluten. I try not to gripe too much, but some days you just want to say “Eff it all” and hoover down a real brownie.
Or a nice 90 minute IPA.
I know how you guys feel like I said in an earlier post I have a little over a month doing gf. This Saturday I had a few friends over and it was so frustrating that I couldn’t eat any if the sweets I made practically the while menu was off limits and the days I cook with gf products my boyfriend complain s about the taste. Now I pretty much stick to small meals mostly made up of fruits vegetables and meat. Its so difficult to go out to eat even in the ” gluten free” places I almost always end up getting sick. and don’t even get me started with the pain, the feeling of always feeling tired and sick for no reason, and the brain fog. One day I would like to feel normal again or at least feel understood.. I guess I needed to vent too lol sorry. Hope ur days gets better u love ur blogs they have helped me so much 🙂
I don’t cook non GF foods for other people. They have a whole array of foods available to them. I do cook some very tasty GF baked goods and they can eat those if they like- I think some of my recipes are non distinguishable with from their gluten loaded counterparts. My husband is on his own when it comes to cooking non GF food to eat. 🙂
This is your new normal Amanda. Be patient…you will begin to heal. Glad I’m helping in some way, shape or form.
The part of this that stuck out to me was “But sometimes, you just don’t want to deal with it. You don’t want to be a drag on other people. You just don’t want to TALK about it.” You hit the nail on the head. The social aspect of this disease was something I was totally unprepared for. Definitely sucks.
And it’s also something that’s real hard to explain to non-celiacs. I have not heard from one celiac that LIKES the attention.
It seems like everyone thinks we are attention hogs and asking to be treated special. No, we’re just asking for safe food to eat. That’s all.
This is so true. Most of the time I’m fine, I always carry snacks with me in my purse (thank you Kind bars! and apples). The absolute hardest thing that still gives me anxiety to this day is the social part. Even if everyone around you is understanding, it’s still THERE and still a topic that people need to be aware of. It’s still something that sets you apart as being different, and not in a good way.
In a few weeks there’s a birthday party I’m going to. It’s out of state, so we’re driving the 3-4 hours to get there. Regular people don’t have to give much thought to this – they can eat whatever on the way there, stop at any fast food joint, then eat whatever party fare and cake there is upon arrival. Me, I’ll have to plan some car snacks in advance, make sure I eat something before I leave, and come up with something I can make that will travel well in the care and be edible by the time I arrive and that other people will like as well, and even then I’ll only be able to eat what I bring since their house is most definitely not gluten-free.
Every celiac reading this is nodding their head like I am right now…we’ve all been there.
Sorry you are feeling down, Dude. I was diagnosed five months ago and while trying to find out everything I could about CD, ran across your blog. Really enjoy it! For me being GF is pretty easy most of the time, EXCEPT, for eating out of course. And as you say “trying to grab something on the fly, forget about it, what to order a pizza, forget about it.” Sometimes the only thing I can find on a menu is a salad or a fruit cup. Yum. lol. Hang in there it will get better.
Thanks Fonda.
Man, sorry to hear that happened to you. I haven’t had to eat GF as long as you, but have felt the same way. I have had your “I have nothing prepared” moment a lot.
I have even taken to taking all of my food premade when I travel. It is great that I don’t have to worry about getting glutened, but I am that guy carrying three days worth of meals around with him…
Also, what Alysa said.
Anyway, hope you feel better soon.
I”m that guy too. I had to pack a separate suitcase for my last vacation just for my food.
Yeah… I just got back into town after driving from the west coast. My meals on the road consisted of three days of instant gf mac and cheese, and two days of potato chips. And I’m thinking I did pretty well this time. (Limited budget this trip)
You were recommended to me by the twitters. I’ve come to the conclusion that I can’t have gluten. I’m afraid to go get actually tested. I’m afraid of the results. A life without going through dunkin donuts for a coffee and a glazed? Depressing. Thanks for writing this and I plan to dig deeper here into your world. But Imma going to be a little more grumpy about it than you seem.
Get tested BEFORE you go gluten free. Just do it. You will feel much more in control of your situation once you know. Really and Honestly.
I love bake goods so for me losing the lovely food of the world like donuts and cakes and cookies has been the hardest.Tasty Cakes- oh how I loved thee with all your peanut butter chocolate goodness. I would much rather enjoy dessert than eat the meal. This has forced me to improve my eating habits a little. It has also forced me to become a better GF baker. I make some killer chocolate cupcakes now that are better than anything I made with gluten.
Start with the blood test but know that if that comes back negative you need to follow up with an endoscopy. I just had another endo the other day and they used propofol as my anesthesia. I had no residual effects other than a headache. Piece of cake- GF cake of course!
Believe me, I can be as grumpy about this as the next guy 🙂
And what Jenny said about getting tested. Please just do it. Even if you don’t feel awful, if you have celiac, your insides are a mess and it can lead to some other really nasty things (cancer, etc.). Don’t take the risk.
Ping me if you need to…
Thenextmartha, don’t be afraid to get a test. Please.
You will feel so much better if you do take a test.
I was diagnosed 16 years ago. I had days before that that I felt I was going mad. It drove me crazy much more than being celiac does.
Be brave, we will all hold yourhand.
Sure I get ‘glutened’ occasionally but most of the time it’s not so bad. These days even Starbucks has brownies, sandwiches and the ham hock salad is to die for. My son has a dairy allergy and my daughter soy and fish allergies so sometimes cooking a meal we can all eat is impossible but knowing we have to be careful is better than the consequences.
Take care.
Sorry you’re not feeling so great Dude. If there’s one thing I can tell you about having celiac, it’s that there will be days when you feel crummy. It has very little to do with what you eat. That’s why it’s called a disease. The diet has not given me a perfect life. I’m just not dying anymore.
Try not to go to bed hungry. I eat eggs, boiled potatoes and some type of veggies when my belly is feeling off. You need to eat a balance of proteins, carbs and fats to keep your blood sugar even. It will make you feel better.
Try not to feel too sorry for yourself either. What is…just is! My son has a posterior fossa sub arachnoid cyst. He’s had 3 brain surgeries for it. Lives on disability. He also has hashimotos, kidney stones (20 so far) high blood pressure, a rapid heartbeat and a hypertropic heart. His friend he pals around with has a severe case of neurofibromatosis. He won’t live to be old. He’s covered with tumors! They are out and about tonight…looking for girls no doubt! lol.
You know…I live with the idea that my celiac did this to my son. He is my youngest. My health was really slipping when I was pregnant with him. I had a severe megaloblastic anemia when I was diagnosed. My folic acid levels were really bad….I was put on prescription folic acid when I was diagnosed. 1 mg 3 times a day….not the usual mcg you see in the drugstore. B12 shots and I was supposed to take iron. It hurt too bad to take. I was also on megadoses of prescription Aquasol A and Drisdol.
Anyhow……. Definately don’t blindly eat something without reading the ingredients for yourself! Ask to see the container it came from….I do!
Cheer up….tomorrow will be better!
Thanks Denise. Sorry to hear about your struggles (and your sons). Believe me, I know things could be A LOT worse…and that’s usually my mantra. “It is what it is” is usually what I tell people.
Sometimes…it just gets to me though.
I know it’s tough to be positive all the time. I was just trying to give you a pep talk. Good thing I don’t earn a living at it …lol When your gut hurts, your entire world hurts…. I know!
Last week I told my husband I didn’t think I had celiac anymore. He said “And I’m not really diabetic either…so I can eat what I want and I don’t have to take my medicine anymore” I told him alright..alright…I get the point! 🙁
I agree with your comment about being normal for a day and NOT having to talk about CD and asking what you can and cannot safely eat. I too have found the social aspects of CD some of the most difficult to navigate and it doesn’t help when family members tell you you can have a bit of gluten and it won’t hurt you or that you haven’t dealt with having the disease. They simply don’t get how vigilant you need to be to avoid being glutinized and that none of us do it because we want to. I concentrate on my friends who make a great effort to keep me safe and healthy and make my time with them as normal as possible by learning about the disease. We all just want to be normal again. I hope you feel better soon dude!!
Thanks Ann. We should all have friends like you do…
I hope you feel better soon ! CD sucks I always remember my doctor told me when I was diagnosed some days you will just feel bad even if you haven’t any gluten by accident .
Even though we have a very strict diet for treatment the auto immune disease is still in our body 🙁 What makes things more annoying is GF is everywhere these days just can’t forget about for even a day.
I can relate to every word you said. Shoot, of course I(I think) you got glutened and if you tried to put a happy face on it I’d have to never visit you again…or at least for a week.
Sometimes I’m going along and I think: “I’ve got this…I’m doing it & it’s not that hard.” And the BOOM I get glutened or stuck at a function w/ nothing to eat when I’m starving…and I swear no matter how much I try…I feel bad about my situation.
But we bounce back don’t we Dude? Hang in there and be kind to yourself…we understand.
We do indeed bounce back Robin…we do indeed.
Just stumbled upon this article and exactly what i needed to read. Thank you: )
I just got diagnosed 4 months ago by blood tests and going for an endoscope soon just to be safe. I’m a pretty easy going and optimistic person which I looked at having celiac at first with a pretty good outlook and I still do. But as you said it sometimes it just simply sucks. The saddest part was when i first got diagnosed i didn’t believe it and then decided to have some Mcdonalds.
Worst decision ever! lol
Being a fat guy to a fat guy at heart (in 2009 i lost 70 lbs). Its been a trial and error learning stage that has gotten better but the list of what has gluten in it keeps going. Wines are usually safe right? But I drank red wine which some have gluten in them. As wonderful the night had been I was hungover and on top of that i also have that great feeling of being glutenized…nawt:p. Sometimes even asking isn’t enough it all becomes your knowledge of other products as well as where it was manufactured from.
This little blog to me was short and powerful and really want to say thank you for writing it. You truly did put a smile on my face: ). I’m kind of feel alone with having celiac. I mean there are a few people I hear of having it but when you try to explain to others Its hard for others to understand how to feel when they don’t understand one little crumb can set off a bomb in your tummy. I HATE having to ask everyone if this is safe to eat or not have gluten. I just say I have a gluten allergy instead of saying I have celiac so there aren’t as many questions. As much as I wish it would go away but realistically speaking it will never go away and thats the thing that sits most. Being able to diet and lose a bunch of weight which, I have done then to be able to cheat is great. But there is no cheating with this diet you truly get punished for trying too as you’ve read I learned so horribly at my own mistake.
But with time passing it shall heal all. Even though we have other plans in the road of life especially me being only 21 years old. I Learned that life is the thing that disrupts you with those plans. The road to recovery has been tricky but slow n steady shall win the race and as hard as it is sometimes it feels we should never lose hope or never give up. Live freely, live healthy, and enjoy whatever life puts infront of you except gluten of course…bail, bail, bail.
Once again thank you for the article as well as the comments a long with it.: )
Hey Matt. Hang in there. The food part gets a lot easier as time goes on…I promise. It becomes second nature after a bit and you get used to (but never enjoy) being somewhat of a pain in the ass when eating outside your home.
I also received your email. I’m not happy with your parents’ lack of support. Really disappointing. Point them to this blog please and let them read what your fellow celiacs go through. They need to be behind you 100% and no less.
Gluten Dude–that looks like the stuff I take everyday lol. Get better soon.
This post resonates with me so much…totally hits the nail on the head. Having seen great improvements during the first year or so after diagnosis, a lot of my symptoms returned despite staying vigilant. Went through tons of tests to see if there was anything else going on–found nothing else. Doc and dietitian guess I’m more sensitive to cross contamination than I’d thought. Have tried to minimize eating out as much as possible to address cross contamination. It’s helped but still have many days where I just feel like crap and can’t help but wish I could know for sure whether it’s the celiac. I hate the not knowing–and perhaps more so, the trying to explain to friends why I have no way to know for sure.
Eating at friend’s places sometimes feels more stressful than at restaurants…they so want to do a good job. I’ve gotten in habit of bringing food with me everywhere. Would love to have that freedom back again. Sigh.
Thanks for your post and your website overall. Great stuff!
Just stumbled across this website and saw the open invitation to vent… I am so upset and frustrated right now that it seemed like the right place for me. Just like many of the other comments I read, I was diagnosed 4 years ago after a long 6 months in and out of the hospital with no one knowing what was wrong with me. I wanted to punch my gastro in the face when he said, “It’s probably just IBS.” Yea, I did always have a crummy stomach, but something was suddenly different. I suddenly felt like there was something punching me from the inside out. I knew that something was wrong. I have to say, a few months in to a gluten free diet, I was a new person. Sure, there were days that I was frustrated and things that I missed, but I was happy to have an answer. I read Dr. Peter Green’s book that started out by saying like sure, it sucks that you just found out you have a disease, but think about how many cancer patients would be ecstatic to follow a diet if that was what could keep them healthy? And it put things in perspective for me and I realized that I should just shutup and be happy to be feeling good..
And all was well for me for about 3 years. Suddenly this winter, I don’t know what’s going on. I was away with my boyfriend for Valentine’s Day weekend and ended up getting “food poisoning” like symptoms after a night of risotto from a restaurant with a gluten free menu. Was it food poisoning? Was it gluten? It’s exhausting to always try to figure it out. Figured I would just puke it out and move on with my life. I threw up for 2 weeks! Doctors said I must have been accidentally glutened and once my intestines are thrown off it could take a while. Stay out of restaurants for 6 weeks, only eat naturally gluten free foods (meat and veggies) and stay away from some of the gluten free grains that are actually harder to digest…. took me a long time to get an appetite back. I started to feel like myself again the end of March. Went to Florida 2 weeks ago for my Spring Break. Ate a home cooked dinner at my grandmother’s house for passover, threw my guts up. Couldn’t eat for 3 days, lost weight. The whole shebang all over again. Sure, it’s possible granny messed up and I got glutened again, but really? after 3 years on such a good path, I feel like i have this down pat, and now this keeps happening? I don’t take risks, when in doubt I don’t eat something. At other people’s houses I don’t touch a thing. I know my diet and my body well. It is soooooo beyond frustrating to be careful and to do everything you think you should, and still feel sick. This week I am eating and I am doing okay, yet I still have a consistent lingering pain on my left side of my lower abdomen. That’s where I have always had the pain. Doctors say its typical Celiac stuff….. So I am just doomed to an eternity of my stomach running my life? I never thought this disease could be a big deal “psychologically” but it’s really messing with me now. It’s hard to stay positive.
Everyone is saying how great it is that gluten free is so much more prevalent now, but is it really??? Years ago when I asked about gluten free people looked at me like I had 10 heads and it was challenging…. but when someone knew what I was talking about, I knew the food was safe. Nowadays, it’s becoming so trendy that pizzerias and all kinds of places are saying they have gluten free because they just bought a frozen dough or they have a bag of pasta in the pantry. It doesn’t mean they understand anything about Celiac. It doesn’t mean they are watching cross contamination. I found out that some of these Italian restaurants cook the gluten free pasta in a giant pasta bowl with dividers, so right next to and sharing the water with regular pasta! I think the more common the gluten free stuff is, it is almost less cautious and serious! Now when I eat out I ask 100 more questions that I used to and obsess over the details of preparation. I wonder if every waiter and waitress are taking me seriously and are doing their job to ensure my safety. Sometimes I say its a life threatening allergy, (even though I myself spent 2 years explaining to people its a disease not an allergy) because people take the word allergy seriously, and the absolute last thing I want to do is spend another night on the bathroom floor.
Sorry for rambling… but you guys welcomed the vent sesh. I really needed it. Would appreciate any advice/feedback/shared concerns. Feeling all alone in the big bad gluteny world today. 🙁
Feeling very pissed and bummed. I am one of those not formally diagnosed Celiacs, but GF after much in and out of doctors’ offices, being tested “nothing’s wrong with you, you are completely healthy”, believing the test results, becoming glutened again only to discover they test negative when you’re gluten free…..and on and on ad nauseum.
I am tired of declining dinner invitations or other big food everywhere social gatherings surrounding special occasions. Telling the truth involves lengthy explanations that people don’t really get anyway. It’s just easier to do something else. I have this one friend that keeps asking me over for dinner saying she’ll cook only what I can eat. She doesn’t get how ubiquitous it is, that it’s in soy sauce and seasoning and spices etc. I make excuses, which keeps me healthy but alienates the very people I need for support.
When I’m at work, co-workers think I’m anti-social or just strange for eating in or eating sashimi from the same place all the time. I tell them I have to eat gluten free, but again, they don’t get it. They don’t get that I still love food and I still love flavor and that being around it and not being able to have it is just pure torture. They don’t get that experimentation can have dire consequences.
Thankful for this rant-site. At least there’s somewhere to go where people do get it.
When i feel bad, my regime is pet the cats and dogs.