I’m done. I’m checking out. I’ve reached my limit.
I don’t want celiac disease anymore.
I don’t want to worry about every morsel of food that goes into my body.
I don’t want the attention garnered on me at parties and dinners.
I don’t want to talk about “gluten”.
I don’t want to have a stomach ache be my constant companion.
I don’t want the accompanying guilt of not feeling well much too often.
I simply don’t want this anymore.
It’s one thing to put up with all the sh*t celiac brings if we could just stay healthy.
And I’ve been going thru a pretty dang healthy stretch ever since I went mostly paleo.
But it’s a landmine out there and you just never know when you’re gonna get hit.
And yes…I’ve been hit.
This time, it seems to be messing with me neurologically more than anything else.
Case in point: I was with a great friend yesterday whose house I’ve been to plenty of times. We were talking about basements and I asked him if he had a finished basement. He looked at me like I had three heads. Why? Because I’ve been in his basement a number of times; but for some reason I just couldn’t make the connection. I was embarrassed and even a bit frightened.
I’m totally crawling out of my skin. I just want to get away and go somewhere where none of this matters. Where life is easy again (if it ever was).
But I know I can’t escape.
Look…I know celiac disease is not the worst thing in the world. I sincerely try to keep it all in perspective.
I have a blessed life. A wife to die for. Kids to be so proud of. Good friends. I work for myself.
Life truly is great.
And tomorrow is another day and I will bounce back as we ALL do.
But for today…I simply don’t want this disease anymore.
99 thoughts on “I Don't Want Celiac Disease Anymore”
I’m sorry you’ve been having trouble, my friend! There’s an Eastern practitioner whom I work with out in Frazier PA (I know it’s far for you, but she does things over the phone) and I must say that it’s really improved how I feel. If you want her info, let me know.
Being sick sucks. Feeling like your losing your mind is probably worse.
Hoping you feel better soon!
where is Frazer.Pa??
Ah yes, the rotten neuro symptoms. Those are the worst for me, too.
I get what I call the “heebie jeebies”, I cannot sleep, I cannot recall simple information, I “ruminate” about the most stupid things, enjoy sizzling nerve pain and vertigo and I feel angry. Like you are, right now.
I get it, I do. I just tell myself, it’s just “gluten head hell” and it will pass.
Drink a lot of water. Hear me out: dump alcohol for a few days. It’s high in histamine and it can make everything feel worse. It revs up the adrenals and affects the brain and it makes it difficult to relax and sleep. We celiacs can lack the enzyme DAO that regulates histamine and it can cause the brain stuff, too. Just a suggestion.
Yesterday, the pain in my joints and muscles was so bad, I said the same things you are:.” Why the F do I have to have this F-ing disease?I’m sick of this. It’s been 5 years of this painful burning crap. I don’t want this thing. ARGH! ”
Today, I woke up and said, “Meh, things could be worse. I’m leaving for Florida in a few days, so shut up, Irish. ” 🙂
And now, I’m off to physical therapy and the chiropractor. Life goes on.
You’re going to be okay, my friend!!!. It just seems like a giant shit sammy today. Tomorrow is another day. But if you wanna bitch about it— just for today— I do not blame you one bit.
Sending healing hugs.xxoo
I’m sorry…did you say anything after “drop alcohol”? 😉
See, you’re okay—you’re still a wise ass…. and I love you for it. 🙂
I’ve quit gluten, I’ve quit the vast majority of dairy that I ate, I’ve quit cigarettes more than once, but……NO ALCOHOL!!!!!!! No more red wine???????? That’s just plain cruel, Irish. I am willing to give up just about anything but the red wine? That’s what people need to get them through the day when having to deal with all this other crap.
I sincerely hope Gluten Dude feels better really soon, without having to give up the alcohol.
hey, I said it was just a “suggestion” for a FEW days! I know, I know–it seems cruel. How do you think I feel? I have to give it up for months to knock down the histamine and inflammation in me. Ya think I’m having a good time here?? I’m not….. grumble grumble
It’s happy hour and I’m having a tea 😉
would that be a Long Island Ice Tea???!!!!!! its like having chemo brain without the chemo!
You make good sense! How can I read more?
I’m going to write an article about histamine intolerance while I’m on vacation next week. I’ll ask the Dude to post it. I think it could very well explain why some people still have annoying symptoms even though they are as GF as it gets.
My GI doc agrees with me, but I am trying to gather more medical and scientific evidence for it.
European doctors give it more credence (no surprise there) and it is not the same as a food allergy. It cannot be DXed via skin prick tests.
It can be resolved via elimination of high histamine foods, according tho those who write blog articles about it.
I did read the book “What HIT me?” by Genny Masterman and there is a blog called the Low Histamine Chef if you are interested.
And there’s this:
brain fog really is the worst. We have been dealing with no allergies since our move and yesterday my husband said,”I hate taking medicine. I feel like I’m in a fog.”. I said,”Welcome to my past few years.” It does suck. There are times where clarity comes and I revel in it, but most of the time it’s here and sometimes I do believe I’d rather have a little stomach pain or joint pain any day over the fog. I have the others, but pain is more bareable than the fog.
Hope a clear day comes soon for you.
Wait, wait, where is the place where I have to ADD?? What? What? Or is it the fog and I just don’t see it?
No more adding is my gift to you 🙂
You had me puzzled for a moment. Hopefully next time I post … I will remember I don’t have to Add anymore! Ha!
As long as he doesn’t start giving us those math/word problems.
“A train leaves Chicago carrying 23 passengers, traveling 40 mph and when it hits New York, 6 get off but 8 monkeys wearing red hats get on. The train accelerates to 50 mph after one hour and by the time it gets to Boston, how many monkeys are drunk and what time is it in Bangkok?”
I hate those.
Have no idea what happened to my name up there.
One time, on celiac.com, a woman wrote to me and then, apologized at the end of her message, citing her inability to type what she wanted to say “due to her brain frog.”
Even though it was a typo, I felt it was a perfect explanation of this weirdness we can experience, so I made her laugh about it and now a lot of us use “brain frogs” to describe days like these.
Feel better soon Dude. Sorry the past few days have been a setback. Tomorrow is a new day. Sometimes we just need to crawl under our blankies and avoid everything for a few days. If you can, just avoid public life and cuddle up with your blankies and drink your water and weak tea and wallow.
That sounds real nice Tracey. Thanks!
I had the same thing happen when I was glutened three weeks ago. My brain just shut down. I have had the “fog” before, but this was much more intense than I’ve ever had before. I was trying to tell a coworker that we had a problem with the door threshold and couldn’t find the word for it and had to finally walk over and point to it. It was before the gut issues showed up and I honestly feared I had (or was having) a stroke. It took two weeks for the gut pain to diminish, but the hives are still breaking out each and every day. All this from a flippin’ CRUMB!
Gluten Dude – I was saying the same thing to my significant other last Friday. I have been so careful and like you, have been feeling really good since taking out dairy and most processed foods. After a take-out salad from a restaurant I usually have good luck with I started feeling like &*^!. I was down for two days with migraine and fatigue and that terrible terrible fog. Celiac isn’t the worst thing in the world but I too am sick of being sick – and sick of all of those things you listed above. I feel you. This blog has helped me feel like I’m not crazy and I’m not alone – so I thank you for that. Even for your rants. Feel better soon dude.
It got hit by something a week ago from Saturday. All I can figure is piss poor handling of something by me in my kitchen since everything I ate that night was naturally gluten free. Stupid shared, combined kitchen.
I recently went on a rant to my husband about how it just isn’t fair! I mean, I literally can’t eat anything, ever, without reading a label. I whined about how I want just one stupid day to be able to eat like a normal freaking person. He should understand, he’s diabetic, but he doesn’t. If he forgets to read a label, he can test and take a shot and be fine. If I forget I’m 10 kinds of screwed. For about 4-6 weeks.
Is it too much to ask to be able to wake up one day that we aren’t doing anything and say hey, lets go to the city? Apparently. Because that takes all sorts of planning meals, taking snacks, packing food, prepping the day before. Celiac robbed us of our spontaneity. And a year later I’m still pissy.
Plus, a week after this mystery crumb, I’m still loopy as hell. I’ll be in the middle of a conversation and just stop mid-sentence. My husband will stare at me, and I’m just like “what?” Because I forgot we were even having a conversation. Plus I’m pretty much a raging psychotic bitch with the emotional control of a toddler who missed a nap.
Yeah, celiac is awesome some days. I’m with you there. And if this was all over the place I hope you understand why. Gluten + insomnia = not exactly the brightest crayon in the box. Get to feeling better!
Nice rant…and understood.
I am so sorry love. Hang in there and we will ride this out together. Let me know how I can help.
P.S. I will give you a free pass to be an ass, throw tantrums or just hide in your office.
Afterwards you will owe me a date that includes sushi!! 🙂
Can we get some of those passes printed up? Might come in handy… 🙂
That is a deal! Luv you.
I’m sorry you are not feeling well.
My journey is just beginning and I find the most frustrating times for me are social events. I’m fortunate right now because I have some control unlike a month ago before I was diagnosed with Celiac.
I appreciate all you do for us by sharing your story.
I hope you feel better soon.
I am angry for this stupid disease of robbing my 11yr old of her memory her friends her normalcy her life, I’m more angry with the stupid idiotic ignorant drs that had chance after chance to catch this I’m angry that I discovered it because she is angry at me for that she misses the way she used to eat the resturaunts I’m pissed that this disease robbed all of us of a Life we deserved it Ran a good 5 yrs of our life it has left a whole bigger than the sunami and unless you were here when it hit you will never know the destruction it caused you can’t even relate there are no words to describe it, and you never Realize the way Food controls our life’s untill you have to avoid it all the normal situations like a challenge at school valentines party’s bday party’s friends houses etc my Hope is more doctors EDUCATE them selves and LISTEN to Their PATIENTS
Hang in there Michelle…
I’m about fed up with Celiac too dude, a lot of the times I may portray having Celiac Disease is a cake walk but in reality I know it’s not. I enjoy what I eat but I can’t stand the fact of suffering from a reaction when I’m not even cheating. I’m tired of feeling sick all the time and have those days were I self pity myself, but I just look on. I always know the next day or 2 those feelings will blow over since I know I can’t change the unchangeable. Social situations are probably some of the hardest with Celiac Disease and I can very much relate to that part you’re going through. Hang in there GlutenDude, I hope you feel better!
Glad to hear you’re human too Taylor. Our community is a better place with you in it.
I hear you brother. Strength and peace to you.
Lately I’ve been feeling like such a…….freak…..because of CD. I make the effort to explain to others, which increases the feelings of strangeness. Excuse me for living!
I knew after reading yesterday’s FB post that you were bad-after today’s blog-I know that being glutened is really taking it’s toll on you and that makes me sad. Like so many others, I can totally relate, especially the part about wanting to go somewhere where you don’t have to deal with worring about it. Feeling like death warmed over and not knowing the cause can literally make you crazy. Thanks, as always, for saying what we all feel and think. It is so comforting to read and makes me feel not so alone in my many gluten relate struggles.
So I hope MY words comfort you- tomorrow is another day. You are stonger than you think and all that you experience, feel and share makes a huge difference for all of us! Hang in there Dude- you WILL rebound as you always do! In the meantime, sleep, drink a lot of water (alkaline if possible), chew on enzymes and feel all of our positive energy heading your way!
– Keep us posted!
P.S. I loved Mrs. Dude’s response….I kind of feel like there’s a couple’s radio show in your future! 🙂
Say good night Gracie.
Good night Gracie.
Amen! I have been rolling these exact thoughts around in my mind (or at least I think I have, the brain fog is too thick to know for sure) since getting glutened 2 weeks ago at a place that has been recognized in print for their gluten awareness. I have been riding the “I want normal life back” train ever since and have spent a considerable amount of time wondering just how bad it would be to scrap this GF business and just see where the road of a completely destroyed small intestine would go.
But then I read Irish’s love story. And I know that I can’t go back. None of us can. But together, because of you Dude and the awesome community you’ve created, we’re all gonna get through it somehow.
Just for today or just for this moment, would you allow yourself to not think of yourself as having a disease? Just for this moment, would you remember that you are whole and complete, and perfect just as you are? I love you. All this will pass.
well said, Janet! 🙂 and I agree!!!….thank you so much!!
Dude- I’ve been sick of this disease and stupid diet for a long, long time. Longer maybe than many of your contributers have been alive. Thirty six years I’ve been on this diet and I’ve been doing my best to stay on it every day one day at a time. To tell the truth, I’ve often thought we should model our dietary needs on an AA model – Athletics Anonymous. So I feel like I need to exercise, and I realize that exercise only uses up my finite number of heartbeats faster, so I call my sponser and he/she talks me down and even drinks ethanol with me until I again want to just veg out.
So when you are fed up with the crap this particular disease gives, call one of us. Or do it in writing, and whomever you reach out to will be more than willing to help. We all know what its like. And you are not alone.
Thanks very much David. This blog is part of my therapy.
I have a daughter diagnosed with Celiac several years ago and my sister was recently diagnosed. I have been very diligent about her diet, we have absolutely no gluten in the house, we frequent a scant few very expensive restaurants, I’ve run a few marathons and raised several thousands of dollars for the CDF and I have relentlessly tried to educate people about what Celiac really is and debunk the millions of myths out there. Only to hear yesterday that my sisters husband “doesn’t really believe in it all. Allergy tests are a scam.” Crestfallen. Is this the world I will be sending my sweet daughter in to. I don’t want her to have it today either.
Tell your dingbat (no offense) brudder in law that Celiac is not an allergy but an autoimmune response in which the ingestion of the giladen proteins leads to infiltration of the intestinal mucosa by both intraepithelial lCD8+ lymphocytes and CD4+ lamina proprialymphocytes and,ultimately, to crypt hyperplasiaand villous atrophy.Symptoms vary — malabsorption of food by the intestine, diarrhea, and failure to thrive are typical in affected children,and symptoms in adults can include depression and anemia. A gluten-free diet alleviates these symptoms and a swift kick to the balls of idiots who think they know better though they themselves are dumber than a red brick also alleviates the symptoms of incredible dense dumbshitidity.
Seriously, my father had that attitude and as a result we haven’t had any contact since 1995. And that was after I nearly starved to death and had to be hospitalized. Let know-it-all read this.
…and then, have him read my story, too.
It’s attitudes like his that remind us we still have so much work to do.
Love this! Saving in my email to forward as needed!
I thought my made up word “assholic” was pretty good, but David’s
“dumbshitidity” is truly a classic. 🙂
Dimbshitidy – an instant classic!
Thanks for the encouragement. Its sad. He insisted my daughter and sister had an allergy to wheat. An ALLERGY? I realize he has been completely tuning me out for years.
I feel the same way at times. Yes, things could be worse, but everyone deserves to have a rant every now and then. You can’t keep your feelings locked up inside.
Ugh. You know I know the feeling all too well. The neuro stuff really freaks me out, especially when I’m driving the kids around. Thanks for sharing your rant, it makes us all feel more normal.
I saw that you had some test run last week. I have been thinking about you and I hope all is well!!
Gluten Dude – I hope you feel better soon! The neuro stuff gets me too. Thanks to Irish Heart I can take some of it in stride but sitting at my desk wondering if I am going to pass out every five minutes or if it is just some weird brain thing related to healing messes with my HEAD!!!!
It also frustrates me when I am looking for a word and can’t find or can’t pronounce it correctly!
Thanks Camille! I was supposed to get the results today, but didn’t hear anything.
I think “normal” may be pushing it 😉
The timing for this rant could not be better. I was going to write about this very thing a few days ago, b/c I got hit. I didn’t write b/c it was from my own stupidity. I let my guard down, I discarded my cardinal rules. I ate at a friend’s house, who swore they understood cross contamination issues. So…….hello bathroom, I’ve been so tired I haven’t been able to hit the gym. I can’t think of words, so I just say what comes to me. For ex., I said, “I’ll go look for the, the the, map.” I was looking for the calendar. The calendar that I misplaced. My heart has been thumping erratically.
I’m suppose to be at the gym right now. uh, don’t think that is going to happen, I just want to go lie down. I was on a roll, was going every other day, I haven’t been since last Tues. I am really mad at myself. sigh, this too shall pass.
Some friends are here visiting, they are staying at a hotel nearby. They want to take me out to lunch and I had to say no. I explained the problem. They said,”But the menu has GF items.” I invited them up to the house and haven’t heard back.
Hope you are feeling better soon GD.
Julie, that’s so sad. I’m lucky in that my friends and family have been very supportive. I had a couple scoff in the beginning, but when they saw how I changed after going gluten free, they shut their traps. It’s too bad your friends couldn’t find time to even call you back about coming over to the house.
Hi Gluten Dude!
My heart goes out to you! I want you to know that your website has inspired me to embrace my celiac and enjoy the adventure of new foods. I know many days it is not easy, but I love the days that I feel good. I was at a point where I had forgotten what it felt like to feel good…you played a part in helping me feel good again.
With changing my diet and using therapeutic grade essential oils from Young Living, it has made all the difference in the world with my clarity of thought. I used Brain Power and Peace & Calming. Two of my favorites. http://www.youngliving.com/en_US/ (Sponsor ID 1331207)
I really don’t know that much about you, but I thought I would share what has worked for me. Hope it helps!
I’ve lived with brain fog on/off for 7 years after my hypothyroidism diagnosis. I used to have perfect memory but not anymore. 🙂
I hope at least it was encouraging to get that response from the Rachel Ray folks today on your other post. You’re getting good stuff done for awareness, even if you’d rather be blissfully unaware yourself!
So, here’s the deal.
For those of us who do not claim to have celiac disease or be gluten intolerant this whole situation is absurd.
Let’s establish some points before I go any further:
1. If you have been diagnosed with celiac disease then I feel bad for you. It is a nasty thing to deal with, especially for life.
2. If you truly have a gluten intolerance I also feel bad for you, no one wants to feel sick and miserable.
3. If you have neither celiac disease or gluten intolerance yet persist in keeping to a gluten-free diet, I couldn’t care less what you do with your life; make whatever choices you want.
The issue lies within the culture surrounding the recent rise of gluten-related claims and the ensuing cavalcade of rhetoric and unseemly demands.
Be educated, be wise, and do what you need to do in order to not get sick but for the love of all that’s holy don’t force your unwanted dogma on those of us who do not want to hear it.
There is no oppression you are fighting against, there is no lack of civil rights you are owed, and for hells-sake don’t make a big deal at a restaurant if the waitress doesn’t know if your meal has traces of gluten in it.
I mean honestly, you don’t want to talk about “it” Gluten Dude (point number five of this post), yet you’ve established a blog devoted to nothing but talking about it.
A lot of people who call bullshit on gluten-intolerance simply have had enough of victims who overtly state how they’ve been “glutened” at every given opportunity. How something must have been cross-contaminated, or how someone touched a product with gluten in it and now have a rash.
It’s as if everyone needs something to bitch about and this is the new flavor.
In closing I would like to reiterate how I have no ill feelings to those who truly suffer, but to those who are merely looking for something to complain about you can go to hell. Not to mention the tremendous disservice you’re doing to those that truly suffer.
Oooh, this is so true. For example, there I was in college, enjoying the best health of my life, all the while thinking, “Gosh, things are going a bit too well. I could really use something to bitch about.”
Honestly, Mr. Poe, I’m not sure what you’re doing reading this blog. It doesn’t seem you’re the intended audience. It’s like everyone needs something to bitch about and people with gluten intolerance or celiac disease is your flavor.
Odin…this community is dedicated to those who fall into your #1 and #2 categories so I actually agree with a lot of what you say. And yes, I rail against those who go gluten-free and are half-ass about it and claim it cured their every single ill. But I’m not clear of your overall purpose of your comment. Can you clarify??
Dude, kudos on a reasonable response. Sorry to have been a little flamey above. I really shouldn’t ever interact with anyone in the morning, even on the Internet. 🙂
Maybe, Odin, you stopped reading the post before Dude got to the “putting it in perspective” bit?
“In closing I would like to reiterate how I have no ill feelings to those who truly suffer, but to those who are merely looking for something to complain about you can go to hell. Not to mention the tremendous disservice you’re doing to those that truly suffer.”
So why not tell THOSE people? No one who reads this blog regularly is a faux celiac or NCGI. None of us are “wannabees”.
I am trying to wrap my brain around your angry thoughts here.
It’s like a backhanded compliment. You seem to understand that the faux GFree dieters are not helping the cause, yet your “empathy” sounds feigned as well.
You do not have to preach to the choir here. We share your disdain for those who make it more difficult for those of us who truly need to be GF.
Yet, you also make it sound like we are all whining, demanding and difficult, often pretending to be glutened..??.. for what exactly? attention? (seriously, you do not know what you’re talking about)
Thanks for your thoughts, though. It take stones to say what you did, but honestly, you’re not “helping. Instead, you have exhibited some serious (and I’ll use David’s word)….dumbshitidity. I had a good laugh over my coffee this morning.
What support blog will you visit next to rant your disdain for their plight? parkinson’s? autism? cancer?
You’re lucky you have good health, Mr. Poe. Enjoy it!
I’m tired, honestly, of mapping out my bathroom routes everywhere I go. It’s a pain in the ass, however I must do so unless I want the displeasure of an emergency cleanup on Aisle 5.
I’m tired of people asking me how far along I am….damn son my youngest is 15 months are you kidding???
I’m sick of asshat doctors who think they know everything. Finally had my endo on the 15th, where they took 3 biopsies. I call the GI nurse back after a week, and she tells me that there is “some villous blunting” but no true atrophy so it officially can’t be celiac (even though my TTG antibody county is in the vicinity of 80). I guess they think I don’t know how to read or something. I feel like yelling at them “hey dumbass I’m a chemistry major, and I do know how to read the stuff on Scifinder and Pubmed so yes I do know that villous blunting and villous atrophy are one and the same”.
I’m tired of getting the runaround when I’m talking to my kids’ pcp begging them to do a celiac panel on my kids….because I don’t want them going through what I did as a kid.
I’m not tired, however, of making my own food. There’s something innately relaxing in knowing almost exactly what you’re putting in your body.
I also love the support that I am getting from 3 close knit friends, all of whom are chemistry majors like me. One of them is gluten intolerant as well, she gets this nasty ichy hive-like rash if she eats it.
It’s a tough world out there for us, and I’m just now finding this out. I just completed my first full day gluten-free, and it’s admittedly tough walking away from not only gluten, but all grains period. But I’m determined because my kids need me to be healthy again instead of what has amounted to a shadow laying on the couch.
Sorry this got a little long-winded but I needed to vent a little bit. I do hope nobody minds.
They say that misery loves company. So I hope by ranting on here, and hearing a bunch of “Amens” from us, you can feel the love. I know the next time I’m down and out from a little crumb, I’ll be on here reading this to remind myself that I’m not alone.
Celiac Disease really sucks.
Switching to eating all gluten-free – not too bad at all, pretty easy after the first month.
Avoiding every single crumb the rest of your life: Not easy.
Trying to figure out what little cross-contamination or ingredient laid you out: Frustrating.
Trying to continue to function like a “normal” person after getting “glutened”: Extremely difficult
The only thing that has “helped” me is to treat a glutening recovery like I would if I had influenza – call in sick, stay in bed, wipe my schedule completely clean for several days, just focus on getting through. For me, the initial symptoms improve after two days, but the brain fog usually lasts 2 weeks, so I typically still scale back anything I’m supposed to do for those two weeks as well. Brain fog is so frustrating and no one understands what it is like if they don’t have it.
Argh! Bugger it all! I’m glutened and can’t figure it out. Might have been a new gummi bear or something with “natural flavor”. Don’t rightly know. But, I am somewhat OK if I don’t move my head at the moment. Stupid %>€€>~%>€!!! ataxia. Drinking water andj hoping I feel better by the morning.
I hear ya, Dude! It sucks. It really sucks.
yesterday, i was trying to explain to my 5 yo daughter’s dr. about her obviously having celiac as i do along with her 2 other siblings, i was wasting my breath. her test came back negative, no duh…she’s been gf for 2 yrs now. It woukd be nice if dr’s listened to whats being told, they might learn something. i gave up after he said vomiting isnt a symptom of having celiac since it only involves the intestines.
You definitely did the right thing, mom. Maybe you should send an article to the doc about the anti body test and how our bodies only react if we have been exposed. Just to educate the ignorant doc, for the sake of future Celiacs. Good luck.
“?he said vomiting isnt a symptom of having celiac since it only involves the intestines.?”
what the hell??? where else would vomit initiate from???
O M G! get a new GI doc, please. I vomit from gluten exposure.
Sorry, but he does not know what the hell he is talking about.
And being GF will not yield a relevant celiac test. It’s pointless.
You’ve done the right thing, you protected your daughter against gluten, and ditched the dr. Some times common sense beats all odds.
The only way to go for celiac is GRAIN FREE.. no corn either.. only this way I feel I am healing completely.. so yes Paleo diet..!
However yesterday I have put sunscreen on me by accident, I am having severe reaction now.. it is hard, since gluten is everywhere!!
3 days off for me after every accident..
I’m stumped…why would sunscreen cause” a reaction” exactly?
I’m so glad I found this blog! I love this, and now i feel less alone.
I was diagnosed about four years ago, was gf until i tried to tackle my first gf Christmas. I fell off the gf wagon for four months because of my denial. Learned my lesson, and now I’ve been gf since 5-5-10.
My sweet 7 year old has it too. She bravely went through the endoscopy and biopsy at the age of 5. I’m so proud of her. She doesn’t cheat, not even when other mom’s bring poisonous cup cakes to school. I quickly learned that I had to arm her teachers w/ gluten free treats for those battles.
I guess I should count myself lucky that I was able to enjoy pizza parties in school, drink beer in college. She has some challenges ahead of her. Not to be cheesy, but I think the fact that we are both Celiacs has made our bond even tighter. I’m sorry if you slipped into a diabetic coma w/ that last sentence.
Can’t wait to explore this site some more.
Thanks, gluten dude.
I have a major rant and this, too, is a day where I am so sick of this and all it entails. I;m also sick of having to be positive about this 24/7 for all of those around me. I am tired of fearing that those around me offer no support but on top of that act skeptical on my “bad” (glutened) days. I idiotically and literally slept with the enemy last night–GLUTEN! It completely slipped my mind that I had a friend stay over and visit for the first time in months. I had to go out of town early the next day and completely forgot (in my haste/anxiety about going out of town without my own kitchen and planning and packing food for said trip) that my friend had slept on my pillow. When I returned exhausted from my trip out of town I immediately went to bed. I woke up fatigued and with my signature three bump start on my upper arm to my exciting day of being glutened. I also had bumps on my face and inside my nose. Every time I am exposed to the enemy (topically) it weirdly always starts with three bumps in a row and pretty soon I can connect the dots to form a freakin constellation. How do I know it is caused by gluten?? Well this bumpy start leads to my usual celiac symptoms. aching back, bloated stomach (even though I did not digest any form of gluten at all), general sickness, many trips to the bathroom. How did people respond after I told them how my day was going/about the bumps…”are you sure you don’t have bed bugs?” “are you sure it’s not something else?” “are you sure you know what you’re talking about?” I THINK I WOULD KNOW WHEN I GET THE SAME SYMPTOMS EVERY SINGLE TIME I AM EXPOSED. I THINK I WOULD KNOW MY BODY BETTER THAN YOU WOULD KNOW MY BODY DONTCHA THINK?!?!?!?! I am not a hypochondriac and I didn’t draw these disgusting bumps on my arm just to fish for some freaking sympathy from you. I need support-not for you to treat me like I am an incompetent fool. The reason I basically slept with the enemy is because I had grabbed the same pillow my gluten-eating and gluten makeup-wearing friend had slept on the previous night. Yes–it was my dumb mistake. After dodging gluten everywhere all day I came home and snuggled with it. But I do not have bedbugs. What I do have are non-supportive and undependable people in my life-they seem to be as rampant these days as the rate at which bedbugs probably reproduce. I am just babbling now but I had to get that off my chest and prove that my feelings are valid and my words mean something. For pete’s sake gimme a break already. Stick a fork in me-I’m done with this.
I do not understand how someone sleeping in your bed “gave you gluten” symptoms. Highly unlikely, hon.
A celiac must INGEST gluten for it to activate the inflammatory response in the body. It is more likely that you ingested something on your trip–as you said:
“and completely forgot (in my haste/anxiety about going out of town without my own kitchen and planning and packing food for said trip) ”
IMHO, of course. Sorry you got “hit” and I hope you feel better soon.
Hmmm…I was imagining a drooling/crumbs in beard or on hands scenario in which gluten got on the pillow and then into KC’s mouth. (As an open-mouthed sleeper, this didn’t seem far-fetched to me!) But don’t some people with dermatological symptoms react on contact? I’ve seen anecdotal reports of this. Can’t find a study, though.
Anyway, KC, I’m sorry you’re having a rough go of it! But look at the bright side: at least you don’t actually have celiac disease AND bed bugs…now wouldn’t that be worse?
Sure, a rash can occur from gluten ingestion ( I get one too), and if she has DH, then it certainly could erupt. And yes, some people also have a wheat allergy with derma symptoms, but I tend to look for the more obvious reason for why she may have gotten hit–and she mentioned not preparing for her trip. This may have inadvertently caused her exposure to gluten.
KC does say she reacts topically, though–so maybe she does have a wheat allergy too? In any case, I hope she is feeling better.
Well I guess I am way more sensitive than the average celiac (whatever that is defined as?). The reason I know this was not a product of my trip was because I typically can tell immediately after eating if I was exposed or not due to key symptoms such as stomach spasms, back pain, headache, and the start of a rash. I was perfectly fine all day Saturday, Sunday, and even felt perfect Sunday night (the only meal I ate out was Sat night). I also planned very well and feel confident in the decisions I made (I have gotten sick other times when traveling and have learned what I need to do/not do though I am not saying you can do it perfectly I would like to think I will constantly learn how to improve the more time goes by and I learn). I have almost flawless skin normally-the ONLY time I happen to break out is when I am also sick from being exposed to gluten (other typical symptoms will also be present-I am not basing this on the rash alone as I know it is possible to be allergic to other things). The friend who slept over is a cosmetologist. I am sure her hairspray/product-filled hair and face of make-up/lipstick could most definitely leave behind remnants on my pillow. I also assume this is the issue because the bumps were on my arm where I bend it underneath my pillow every night and on the side of my face and the inside of my nose that also faces downward toward the pillow. I am also frustrated with those that say because they do not suffer those same kind of symptoms as I do so gluten cannot possibly be the culprit. Since when is celiac the same across the board for every individual who has it? Trust me-I would like to think I am not that sensitive, but time and my bodily symptoms show me otherwise. Also, I do not go around eating my deodarant or licking up my shampoo, but you better bet I changed all of those things because I know for a fact that I react to gluten in any form. Different times that I know I FOR SURE was exposed due to my own cooking error (that I later traced back after getting sick) I have always had a few key signature symptoms but depending on how I ingested it/or in what quantity my other symptoms have varied greatly (my point in that you cannot define something in black or white that still surprises even you) and that almost always includes some form of a rash. I do not think you can put a measurement or standard in place for something that affects every person differently. I did not question that I knew what was wrong with me when many doctors did (my diagnosis was confirmed at my 3rd specialist) so why would I listen to the notion that someone else knows my body better than I do? That was my initial rant to begin with and a reason why I feel many people unfortunately go undiagnosed for so long because they do not meet that single “celiac standard’ necessary to diagnose. Please do not assume this “one fits all” attitude and hypothetically consider the situation as it is and offer sound advice instead of immediate critique and skepticism (like the people I was originally complaining about). Please.
I cannot tolerate hair sprays, perfume of any kind. I would go to the Kennedy Center to hear a symphony on occasion and would have to walk out b/c of all the different perfumes in front and back of me, thank god they had a wine bar.
Yes, everyone is different in regards to gluten ingestion. However, what you are describing seems to me that you may be allergic to wheat, lotions, detergent, her/his perfume, on top of having celiac disease or a gluten intolerance.
I have celiac disease and sleep beside my husband every night. He is not gluten free. His presence in the bed does not make me sick.
You have to ingest gluten, period. I’m just trying to help you to know that this is a fact. We brush our teeth before we go to bed, and take a shower. Maybe the next time you have someone stay over, you take a shower together, or at least request that a shower is in order to ease your mind.
Celiac disease is about the small intestine, swallowing gluten.
IH is correct, you describe a trip where you were not prepared to take your foodies, that is probably where you got hit.
Don’t make this more than it is. Ease your mind. Think about it.
You can have a lover or friend stay over, ….and enjoy yourself. You are in control of the kitchen, tooth paste, use organic soaps…if they like to sleep in a t-shirt, give them one of yours.
Try to see this in a more positive light.
Interestingly enough, a fellow celiac/blogger just wrote this article.
very interesting IH. Thank you for bringing it to our attention.
Really needed to hear this, I’m sick of telling myself “it could be so much worse”, “you’ll feel better for it”, “there are so many gluten free options”. I just need someone to say, “you know what? This sucks.” Because it really does.
That’s what we’re here for Helena…
I don’t know about your going to the Kennedy Center and being concerned about perfume. John F. Kennedy himself didn’t need to be concerned about gluten because his Celiac was in control with STEROIDS. Life truly CAN be better with MONEY, you see–even though the docs got the Dx WRONG with so called Addison’s Disease which JFK never had. Which is not to say at all that Celiac is a walk in the parrk–not at all.
Psychiatrists have to fucking LOVE Celiac because out of the unknown and the grand lack of skills in diagnosing it on the part of all physicians even today, they benefit. Big Pharma benefits.
And lives are destroyed.
I am however on the upside IMPRESSED with the U Chicago information on mice that had IL-15 induced and got Celiac, and then had IL-15 dropped to zero and went into REMISSION. That is HOPEFUL.
What is NOT HOPEFUL is the fucking attitude of HUMANITY in these United States of Intolerance not only of gluten but of Celiacs.
I was given a life-death sentence by a Catholic Nun at age 11 and was called “Biafra” in high school. I was so obviously EMACIATED in BODY that it would normally take a fucking BLIND DOCTOR not to notice–but obviously all doctors in the United States ARE trained to BE blind when it comes to Celiac. My bones deteriorated. I went gluten free at age 45 suffering every single day of every single year during those 45 years. Then something happened–I felt better–much better. What a difference! My energy started coming back and I didn’t feel like daily walking death. And guess what? It made no fucking difference at all in the rest of my life. My family by that time abandoned me. My oldest brother was a career politician and it looks like he committed a crime in denying me access to our late mother’s estate trust. I have been thoroughly and permanently financially RUINED by this disease and the bullshit ignorance attendant thereto and also the bullshit bigotry attendant to the mental schmental system I had to get with to merely get housing and have food to eat and utilities paid. Holy hot tamales yes for me this has been the biggest human rights debacle in all of human history if not modern United States history. Psychiatry and the bullshit ignorance of the medical profession in the biggest stupidest most expensive bloodsucking parasitical bullshit healthcare system ever devised by modern industrial man in the United States of King James of Psychiatry of Corporate Megalopoly of Corporate Christ Big Pharma builshit. However I try to be calm about the fact this ruined my life financially and when you are ruined financially in this country you are ruined socially and when you are ruined socially then only bigotry and discrimination attend your life path—something I have also experienced but it doesn’t matter how many laws are broken by the bigots who run things because if you can’t afford an attorney it comes down to how much justice you can afford and it is a merry-go-round of constant bullshit.
However after 11 years of being strictly gluten free and age 56, life is clearly better than it was the first 45 years of life. It is just that my consciousness turned on and alighted so much since that time that it is literally like waking up from the dead and realizing I was cheated out of my life and not only that blamed for the catastrophe as if I planned all of it and you will never escape the bigots and the criminals within your own family who can never forgive you and thus get over on you making it even more difficult to recover financially. It is CRAPPPPPPPPPPPPPPPP as is ALL IGNORANCE in life on this fucking bullshit earth populated by human beings who are by nature BIGOTS and no amount of lawyering or legislating can ever stop it. Bigotry and ignorance rule…..yet we are told by religion that the afterlife is a place where none of these things rule. It makes “Jonestown” sound like a preferable place in South America with Jim Jones and his stupidity. And you know what the very worst institution in my life was? The Roman Catholic church, which teaches bigotry by teaching that failing to live up to its standards–even for reasons of this rotten set of ailments related to Celiac–are unforgivable and reason all such brainwashed bigoted minds should put forth bigotry and discrimination against you even after you successfully pull yourself out of a living death with the strict gluten free diet!! Human beings ARE amazing for absolute CERTAIN!!!
I just found your blog. I am having this day today and reading this made me cry! Sometime you feel so alone. I too am sick of talking about it! I just want it to go away, but like you said tomorrow will be better. Usually I am positive about my celiac disease, but today I am not! Thank you for writing a “real life” look at what it’s like to have Celiac Disease. I can live with the tummy issues, but when it robs me of who I am, then I get pissed!
Hi. So I know this is an old post but I’m having a really tough day (actually a rough few weeks). As much as it sucks, it feels good to know that I’m not the only one who feels the need to rant. After being diagnosed it felt like a huge weight had been lifted from my shoulders but the recovery process is a whole new ball game that I did not expect!!
I definitely agree with MerLow, normally I’m quite positive and optimistic that I can do this and fight anything that comes my way. But right now I feel broken and defeated. I really did not ask to have celiac disease and I’m doing my best to deal with it. But I’m starting to think my best isn’t good enough… When I start feeling normal and healthy something always comes up and knocks me back down. It’s a vicious cycle with no rule book!
Oh well, enough of the rant! I guess tomorrow might be a better day. Well if not, maybe the next day will.
Hang in there Keratee. We’ve all been there. You’ll bounce back.
Thanks GD!! And guess what, I made sure the next day was a good day and nothing got me down :).
Thank you SOOO much for all the blogs. It really helps when you feeling down and alone in the world :). You do great work man…!
And thanks for including my rant in your latest blog, it put the biggest smile on my face :). Hope it helps other people out there.
Stay strong celiacs!!
Just came across this… I love this post. I have had symptoms since I was 16. I was accused of having eating disorders. I had depression, asthma, and infertility. I was tested for celiac and blood test was suggestive. Had the bowel biopsy and it was negative. Was told by doc to go on gf diet for a month. It wasn’t even a week and I was way better. I stopped throwing up. A month later we got pregnant with our son. I was 27 when I was diagnosed. I found out later that I have cousins on my dad’s side that have celiac. The problem I have with all of this is the people that hate on people like me and say “you dont have celiac disease” or think that this is a fad diet for me. I have all the same symptoms as celiac. I didnt choose for gluten to affect me like this. I don’t eat like this by choice. It is hard enough having to be gluten free in this world. Gluten is our main enemy, but ignorance and stupidity is a close second!! I was told by a doctor recently hat gluten intolerance is just celiac disease that hasnt progressed enough to lead to scarring in the intestine…??? I am happy this blog exsists because I too am sick of celiac disease and gluten intolerance. Whatever you call it, it sucks…
This rant made me so emotional – I’ve been diagnosed with Celiac for only 4 months, and gluten intolerance since Oct 2014. This past week has been hell, and this is exactly how I feel :/ Fuck Fifa Parties and their shitty-ass gluten-infested snacks. Smh.
Oct 2013* – TYPO
Oh dear I recognise myself so much with your rant. There are days that are harder that others.
The “stop talking GF or people will start talking about you” really got me! Been there, done that. Or, in this case, been told that. And yes, my face was exactly like yours: whaaaaat?!
That people ( most of them close friends and family members) who say: “come on! You’ve been living all this time without knowing your condition and nothing happened to you, ever, you shouldn’t complaint!”
whaaaaat!? Just because now I can freely talk about about it because I actually know what happens to me and what is making me sick I cannot talk about it? Well, excuse me if I never talked before about how many times I used to poop a day due to the gluten I was eaten and I wasn’t supposed to. I just tried to be discreet about the fact that I was ALWAYS sick.!
My most comforting hugs.
We all have been there and felt that way too.
Thank you for writing this. I also have celiac and I hate it. It runs in my family, and I know too well the long term effects–they terrify me. I do not want the neuropathy, intense pain, health deterioration of my aunt and grandmother. Sometimes I get so frustrated at people who choose to go gluten free, they make people with actual celiac seem trite. I am looking forward to following your blog–I am two years into gluten free and it doesn’t seem to get easier.
Well now then. Never responded to a blog before. Can I just say Dude… I needed this. You said everything I’ve wanted to say but have feared to say because I’m afraid people just won’t understand and I’ll be labeled as a hypochondriacal drama queen. They all love me, they are good people but this CD mess is really hard to explain. I went over 40 yrs undiagnosed/misdiagnosed until I got so sick they had to do an endoscopy to figure it out. Over 50 symptoms/ailments in the process. The struggle of brain fog has been a constant in my life so I really connected with you there. You are like me. Others are like me. Soooo… I’m not alone in this? Thank you thank you thank you for ranting. I feel a tad more human and much less stupid.
So, I’m fighting tears. Big ones. Crocodile size. Think I’ll punch the tar outta my pillow now. Then, cry. Long & hard.
Let it all out. Then come on back and read some of my humorous posts. Laughter is the best medicine.
I have fleeting “I feel sorry for myself” moments (like when a bunch of my friends go out to pizza and I have to get a salad, or when I’m grocery shopping on sleepy Sunday mornings and I can’t grab that maple bar to eat on the way home!) but after learning the hard way, I will NEVER voice those opinions unless I am in the comfort of people I’m extremely familiar with.
People are so insensitive – I was at a wedding and the eclectic bride and groom chose a donut bar (serving the best donuts in Minnesota) and I just sat and watched everyone eating their donuts. I made a comment about missing donuts, and one girl snapped, “At least you don’t have cancer.” You’re right – I don’t, and I thank heaven above daily for that – but I do have a debilitating disease that frequently gets the best of me, but I’ll make sure to keep that to myself.
This is what makes awareness and understanding so difficult! This disease sucks, but we’ve gotta keep our heads up!
Reading all of these made me cry. I am living it. I so understand.
Been well for 2 years and just plummeted. I don’t know why.
I will not add to this list, because we’ve all heard them before.
But I had a good cry last night and hope this gets better soon.
My husband makes me laugh all the time about these things and I have to tell you it helps immensely!
Kind of like Gluten Dude says, laughter is the best medicine, not a cure, but sure as hell helps.
I am so with you dude. I had a Halloween party at my house this weekend, I knew all the food was safe, but when the lights were low, and my gluten free beer was on the counter next to someone’s regular IPA, and I inadvertently took a swig of said IPA, and have been a wreck……
I too, am just done.
I am worn out, tired of thinking about it all the time, tired of talking about it all the time, just – beat.
Three weeks into a horrific glutening, and the symptoms seem to be increasing, especially the anxiety attacks and headfuck ( thats uk for brain fog) thank heaven i found this blog and this post. So fed up of feeling like shit all the time five years into gf
You allow the space for people to vent without judgement mr dude – that is a rare gift and long may it continue
Please point me in the direction of chickpeas to have with my poached egg on toast.
And some more gf cardboard biscuits full of sugar. Please help me find a mask to wear when near the bread aisle in Asda. Please help me to stop looking at lurid pics of The Digestive System. I am now totally sick as a parrot and my favourite thing is drinking cider Strongt bow is GF and Magners Pear cider. The only way forward is a short list on a long piece of paper or a long list on a short piece of paper of pithy sayings about food. Seriously I know it’s not funny but hey let’s all meet up and have a laugh!
Idk if you even still read the comments on here so many years later but you have no idea how what you wrote applies to so many other people. I was diagnosed when I was 19 and in college. I have been on this journey for 5 years now and I’m still struggling. I follow a 100% gluten free diet, even my husband is 100% on the diet (talk about loving someone). I never struggled with depression or diabetic issues before. I was healthy. I have a brother and he has nothing wrong with him. Nobody in my family has celiac but the have other autoimmune diseases so on that front I’m really not surprised but I can’t help but feel utterly cheated and it steals my joy sometimes… more times than it should. Even on the grand scheme of celiac all my doctors are baffled at how it affects me and why I have super sensative to even the slightest thing now. When gluten gets in my system it’s terrible and it lasts for a very long time. One time my husband had pizza, I kissed him on the cheek and got contaminated from his beard and was sick sick sick for 3 months. I get sick to the point that I can’t eat without my body freaking out all over again like it’s gluten. Thankfully I have a Godsend of a pharmacist. She told me about Budesonide. Perfect for celiac sufferers that have bad reactions like me. It’s a steroid made to work specifically in the intestinal tract. So, instead of taking immunosuppressants such as prednisone that has icky side affects, you can take budesonide and not have the side affects and have less of a reaction with the gluten. Where I live there is no support system for those with celiac so I think it’s important to share.