Dude note 1: This is my 700th blog post. Crazy how time flies. I started my blog 89 months ago, so I’m averaging 7.865168539325843 blog posts per month. And yes I did that math in my head. I figure each blog post takes me about 3 hours to write, publish and discuss. That’s 2,100 hours. Time well spent? I’ll leave that up to you. Just be gentle.
Dude note 2: My stomach has been killlllllling me the past few days. Sometimes celiac can be exhausting.
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Ok…moving on. Many of you may not know that I have a “Celiac Rants” section, where I post people’s emails who are just pissed off at celiac disease at that moment. And I have even thrown a few on my own in there. I don’t post as many rants any more. Perhaps because I’m no longer angry at the disease like I was 89 months ago. Perhaps because I didn’t want to drag the site down with too much negativity. Perhaps because [fill in the blank].
But I do save them all in my email so I thought we’d catch up today on some quick rants, some of which I’m sure you can relate to.
My fellow celiacs…RANT AWAY #$@&%*!
I am fat and I hate myself. I hate myself for having this disease. I HATE cleaning so freaking much. In fact, I would rather take a header off the historic buffalo jump we live near than clean our bloody kitchen one more time. I hate the conflicting feelings of knowing my friends are doing their best, but simultaneously wanting to crumple onto my gluten crumb covered floor every time they bring in their effing cursed boxes of pizza. I want a life where I can have a clean kitchen, nobody touches my shit, and I don’t have to be the paranoid person. I want my friends to come over and have everyone enjoy their food without worry.
I was diagnosed 6 years ago after being so sick for a few months I kept ending up in the emergency room. Fast forward to now and my mom keeps asking me if I’ve tried eating wheat again because she thinks people can eventually grow out of celiac. I said “no way!!!” And she got all annoyed with me that I won’t even try to wean myself back into normal eating. She got upset with me when I tried to tell her you don’t grow out of celiac.
My celiac disease is not (SO not) the same thing as your low carb diet. I can eat potatoes and rice and you need to stop telling me not to. I can make my own dietary decisions, thank you very much. Also, I’m sorry that you don’t believe I got sick from inhaling wheat dust and chaff at the antique farm equipment show, where they were threshing wheat right outside the building where we were demonstrating for 4 days.
Here’s the thing. YOU don’t get to decide what causes my symptoms. You just don’t. This is not your decision to make. And treating me like I’m not smart enough to make my own decisions regarding my health is insulting. Just. Stop. And while you’re at it, find a new “best friend”. Because I deserve better. (Dude note: I agree. Nicely done.)
I’m sick of being sick! I’m sick of feeling alone. I want a doctor that knows something about Celiac. (I am really sick of the doctors saying it’s rare and not that big a deal) I want to be able to work a full day! I want Mexican food!!!! I have been sick my entire life and I’m sick of all that goes with it! Thanks for making me laugh Dude. Appreciate your hard work helping us help each other!
My one biggest disappointment is the fact that the diet (as we all know by now) is NOT a cure-all!! I’ve had many different procedures regarding celiac and even IBS and you would think by now that I’d be feeling rather well..HELL NO!!!! Out of 7 days in a week I feel “fine” about 3 at best!! I don’t cheat either as I’m faithful to the diet. So there you go: it effects my social life quite a bit never knowing if I have to cancel plans because that day I don’t feel well AGAIN …very frustrating to say the least!!!
And my physician is a GI person so it’s not because he doesn’t know what he’s doing!! If I had a VALID reason to feel lousy so often I could deal with it better but there doesn’t seem to be!! The GI guy says that everything is fine..so much for that!! There are days I feel so discouraged!! But life goes on and you do the best you can!
Thanx for this site..it’s a godsend!!
I just got diagnosed last week. At least I know why my ass has been exploding for months. Had to buy a separate toaster. Increased cancer risk! Osteoporosis! Brain fog! Trying to stick to the diet is absolute bullshit as the bread costs $7 per loaf and tastes like ass. Am trying to decide which is a worse quality of life – never being able to eat normal tasty food again or having chronic celiac pain and cancer risk.
The fucking worst part is that as my (deceased) 41 yr old sister and I both have it, my kids have to be tested. I don’t want them to not get invited to parties because they’re the weird gluten-free kids. This entire experience is literally the shits.
I really don’t know what to say. Why do you have to hurt my stomach every day? Why do you have to make me so tired? The worst thing is. Okay there isn’t one worst thing there’s many. Why do you make me ill in such a way so that no one can see it.
Why do you have to be hidden? I feel so ill inside and no one can see it. Why are you robbing my nutrients and vitamins off me. I’m gluten free damn it! I’m lactose free now too and coffee free. I chased so many crappy restrictive diets for you. I’ve spent hours pouring over books, blogs and journals for you. But how do you repay me? Same old shit. I know I wanted to be thinner. So thanks for trying to help but I’m still not slim.
What can I do to please you? I don’t want to be restricted for ever. This is crazy! Thanks though for making me eat healthier I guess. But I don’t understand why every year you are making me worse. Why are we not getting better? You know I’ve tried everything I wish I knew what it was you wanted. I don’t know how I’m going to get through the rest of my life tired and I’m scared we will die young from cancer.
I’m 15 and I was diagnosed with celiac a little while ago after months in constant pain and feeling completely exhausted all the time and no one could figure out why. During all that time my grades dropped dramatically and I wasn’t able to do anything but sleep and I felt cheated like why does all this bad stuff keep happening to me bc it wasn’t even the worst thing that happened to me all year believe it or not and now I have to do with this and I didn’t even know what it was and I couldn’t hang out with my friends and do fun stuff like a normal teenage I felt and still feel like I’m missing out and it’s not fair and now I have to live without gluten at 15 for the rest of my life. It’s just not fair I just feel like I’m never going to be able to live freely and be a freaking person again.
I was diagnosed two and a half years ago and every day since I’ve felt deprived. I can’t and won’t “cheat” because the pain isn’t worth it but as someone who hates to cook it’s hard to find food that satisfies me. I didn’t ask for this crap. I already had Hashimoto’s and wasn’t coping well with that. Never wanted to be a slave to medication. Now I’m on daily meds and I can’t eat the stuff I like because it’s full of gluten. Sometimes I feel like stopping my Hashimoto meds and just letting the disease have me. How do you deal with this every day???
I got diagnosed with celiac disease 1 month ago. I am a 16 year old girl, a junior in high school. None of my friends understand and they all joke about me. I feel so weak because I feel like its so hard to advocate for myself and sometimes when I go out to eat with friends I just order something that is gluten free but could be contaminated. It makes me feel so bad because I know that I should be doing better.
Also, it feels like my parents don’t even care about my disease. My mom just bought me lots of processed things that say gluten free from the grocery store and they don’t seem to care about cross-contamination or separation of the food and it upsets me and I don’t know what to do about it. I just don’t know how I am gonna do this for the rest of my life I am so scared. I wanted to travel and be spontaneous and be able to go out with friends whenever and eat things at parties and go to buffets and have a glass of beer on my 21st birthday and now it just seems like it was all taken away from me. Everyday I am discovering new things I can’t eat and more things I can’t do. I know that I should have a positive attitude but I am sorry its really hard.
Thanks if anyone ever reads that but it felt good to say.
And….breathe.
Need to Vent?
I hate celiac. You hate celiac. We all hate celiac. With all that pent up anger, people need a place to vent.
Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away. There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner.
Positive energy brings positive results.
Don’t you feel better already??
Oh wow….I just really want Ranter #4 to come over for a huge GF Mexican Food feast. Really, I want all of them to come and I will make sure there is dairy free, corn free, refined sugar free and whatever else free there needs to be! Because I’ve had Celiac for 5 years and thanks you, Dude I didn’t give up, and thanks to Jennifer Esposito whose blog told me I had to go in my kitchen and cook, I am surviving and really now thriving. I go to a GIG Support Group and we have members who have lists of 20+ foods they cannot have and I can now research and make things they can eat to bring and share with them! As of Monday, I am going back to school to get a degree in Occupational Therapy because OTs help people overcome life challenges. When I finish that, I am thinking about getting some nutrition training so that I can combine OT with helping people overcome the emotional, physical, and logistical challenges of radically altering their eating to get their health back. So, in my case your time on the blog was VERY well spent! Because I don’t know if I’d be on the other side and ready to help others without it. Your blog was just what I needed on some very, very dark days when I thought I just couldn’t go on. The ranting….and then going for a walk or just breathing deeply, and moving on is very necessary. Thanks for yet another great post Dude! So glad you keep them coming.
I just want to give Thankful a high five and a round of applause for her attitude. May she thrive and prosper and enjoy all that life offers (without gluten).
#4, I feel you on the Mexican food. I’ve been dying for Mexican restaurant food for years. And I can’t eat corn either. We will be visiting China this summer and everyone says oh, the food, it will be so good! I’m thinking, umm, yeah, not so much, according to my research, they put wheat in EVERYTHING to thicken.
#5, look at corn, soy, and dairy for cross reactions to the proteins. Get tested for small intestinal bacterial overgrowth. PS, sheep’s milk has a different protein structure than cow milk, it doesn’t cause a reaction for me.
#6, I make up songs and jokes about the diarrhea when I’m having bonding time with the toilet. It helps.
#8, the world seems to be against celiac disease, but not too long ago it was the people with peanut allergies that got the bad rap. It’s going to get better!
#9, I have chronic fatigue syndrome and celiac. I have the days where i am at the end of my rope and cannot fathom another single step forward (and a little more often than I like), but the next day I get up and keep plugging along and things aren’t so bad. It helps to find a cheerleader to be your motivation when you have none, even when you kind of hate their cheering you on when you want to crawl under a rock.
#10, hard cider is very good and totally gluten free. Don’t worry about the beer!
Aww, Rant 7 got me right in the heart! The author deserves a hug or to win the lottery or something. They’re all good though. Thanks!
Rant 10 hit the hardest for me, I feel the same way honestly.