You’ll get a few things from watching the following video.
One…a good amount of adult language (you’ve been warned).
Two…a great laugh.
Three…a sense of how I’ve been the past 4 days.
Yes, I got glutened.
Yes, it was during my weekend in the city.
And yes, it turns me into the biggest a**hole on the planet.
For whatever reason, when I get glutened, there is a two-day reaction so I can never be sure what was the culprit.
I woke up Monday feeling ok, but by lunch time, I was mush. Took a two hour nap.
Maybe I was just tired from a long weekend.
But by Tuesday, I knew I wasn’t just tired.
I was a full-fledged idiot.
Tantrums at work; short with the Dudettes; arguments with Mrs. Dude.
It wasn’t pretty.
When people ask me what I feel like when I’m like this, I tell them it’s hard to explain but I just feel “chemically off”. There is an imbalance in my system that wrecks havoc with my physical and emotional well-being.
There was one point on Tuesday night where I was driving alone and as another car was approaching me, I thought “would it be the worst thing in the world if we had a head on collision?”
That’s just crazy.
Another time, while I was yelling at one of the Dudettes for something incredibly minor, she gave me well-deserved sh*t right back and finally I said “Sorry hon…gluten turns me into a total jerk.”
I think Mrs. Dude summed it up best. We rarely, and I mean rarely, fight. But by Wednesday, she had had enough with me.
When I finally got her to open up to me, she said she hates seeing my this way and that it “opens old wounds”.
I understood.
So next time you hear a “celiac expert” say the symptoms are simply bloating and gas, tell them they couldn’t be more wrong.
Or if you’ve just been glutened, tell them to f*ck off 🙂
Damn you gluten.
I feel ya. Sorry you got glutened. 🙁 I too am a wreck when I get glutened. It messes with your emotional balance big time!
“Dude” I get it. I glutened myself last Monday morning. Been moving from VA to FL and the going back and forth made me too tired to drive the twelve hours at once on Sunday night. Got up Monday morning, fixed a quick cup of coffee using the gastly powdered creamer and took off down 95. Didn’t take an hour before I had diarrhea and was falling asleep at the wheel. No fun having the big D every 20 minutes on Route 95 plus having to stop to nap.
Anyway, I’m sure it was the “creamer”. Won’t make that mistake again.
PS – my wonderful brother bought the world’s most expensive organic, free range turkey to accommodate my needs for dinner. How cool is that?
Very cool!
Dude! Consider keeping children’s chewable Benadyrl fast-melts with you AT ALL TIMES. They won’t do a complete fix, but they can damp down the symptoms, no matter what the “organ system target du jour” is. Yes, I know they have artificial sweeteners in them (so wrong for so many reasons), but if you get the new bubble gum flavor, at least you won’t be getting the coloring.
Wow, and I thought you left NYC unscathed…sorry to hear this but let’s try to get the old Dude back…what a week for personality disruptions, eh?
Dude… pretty brave admitting that you’ve had thoughts of ending it all, but I know what you mean… it wasn’t you talking, it was the gluten. I had the same thing happen just out of the blue, while driving down a hwy at 110km/h – so scary that your own mind can betray you like that. But it’s the gluten, it’s poison for your mind in a physical and therefore, an emotional sense as well.
I wouldn’t call them suicidal thoughts per se. Just that it wouldn’t be so bad if it happened. Hard to explain.
I wasn’t suicidal in the least, either, when the thought popped in my head, which is why it was so disturbing. It simply came to me that if I just jerked the wheel and hit the culvert, it’d be all over. I’m not sure what “it” was, but it wasn’t a conscious thought, that’s for sure!
Wow…powerful stuff Lisa.
The last time I really, really got glutened (at a Celiac Support Group Luncheon, no less), I remember telling one of my friends to come over with a shotgun. Again, it wasn’t exactly suicidal, as I’ve been depressed before, but it is just that overwhelming chemical response and despair…it’s not that I’ve never felt worse than that, but I think it is the combo of the intense physical symptoms coupled with the neurological that bring on any type of those thoughts. Dangerous combo!
I have had that exact impulse Lisa, most of my life at unexpected times, sometimes years apart. It’s as though my hands might do something I didn’t ask them to. I make myself think about something else. Anything. I sing, crank the radio, roll down the windows. Crazy hands. It definitely feels chemical Gluten Dude. Thanks for posting this thread.
I know what you mean, I used to get like that before I was diagnosed.
When I get glutened, I become really moody and the littlest thing sets me off. I really wonder why this is. Lucky for me, hubby usually knows when I’ve been glutened and gives me my much needed bitching time. I always feel so terrible after…it’s such a Jekyll and Hyde thing and I just some how snap out of it.
Anyone know if there are any studies on how gluten affects us mentally/emotionally?
There are many studies about gluten and the brain. I enjoy reading the blog by psychiatrist Emily Deans her Evolutionary Psychiatry blog.
http://evolutionarypsychiatry.blogspot.coevolutionarypsychiatry.blogspot.com
Google gluten and either depression, bipolar, or schizophrenia and see the interesting stuff that comes up. Interesting that celiac and schizo are highly correlated. It’s all the brain gut connection just different manifestations.
I definitely know the correlation between anxiety, depression, and gluten firsthand. People don’t talk about it enough. I’ve been on a low dose anti-depressant for the last year and a half, even though I’ve been gluten free (with CC of course) for 6 years.
Oh, and I have had my vitamin levels checked by my doctor multiple times. Would you believe it, I’ve actually got a better level of Vitamin D than most people! Super pale, celiac me who spends most of her time indoors.
Tons! Gluten affects the brain as much as any other organ.
https://sites.google.com/site/jccglutenfree/depression%2Canxiety%2Cpanic
http://healthyeating.sfgate.com/can-gluten-affect-moods-2436.html
Well that was interesting reading. Now I’m even more depressed 😉
Big thanks IrishHeart! I’m newly diagnosed and haven’t told my family yet because I don’t know how to explain the psych issues which plague me most. This may help me make my case if I ever get the courage.
Thanks for sharing Gluten Dude! You make me smile again!
Oh sweets, these mood alterations are from multiple vitamin deficiencies, a disruption in seratonin and tryptophan production, amino acid deficiencies, a disruption in neurotransmitters–there are all kinds of reasons why we feel like total whackjobs .
“Some researchers believe that malabsorption can interfere with the body’s handling of neurotransmitters that regulate mood. In particular, malabsorption-related deficiencies of tryptophan appear to contribute to depression in celiac patients. Tryptophan is necessary for the body’s production of serotonin, which is the central neurotransmitter involved in regulation of mood and anxiety.”
http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Depression.htm
It resolves, I promise you– but gluten can make these symptoms return in some of us–as you can see from the many responses of support. You have to make sure your doctor checks your vitamin levels (B-12, Folate, D, B6 especially–and your thyroid) as these contribute to psych issues
The thing to keep in mind is….it’s going to pass.
and welcome to the Fold. 🙂
If you need help telling your family, we can probably help you with that.
Hey, Irish dude, I finally figured it out about the same time my daughter cut contact with me until/unless I see a counsellor that it was gluten. Doctor didn’t know, (even tho liver enzymes were so high my life insurance rejected me) finally after going gluten free I ate white bread to see. Then went berserk basically, with lots of physical things too that lasted weeks and my blood test a week later was 99 (ttg)! That confirmed it. Gluten really does affect me mostly neurologically. As I see by accidental glutening. It’s like clockwork!
But, it’s too late! My daughter hates me and will never find out cause I can’t talk to her! The irony is she just became a psychotherapist. Ppl need to know about this! How long will it take b4 it is common knowledge. Sigh.
This book was very illuminating. It’s written by a medical doctor and it covers the research and findings on Celiac Disease. No propaganda or B.S. like some other books, just facts. It was published in 2014, I believe, so it’s pretty up to date. It’s very thorough and goes into the physiological effects which really helped me understand the whole mental and emotional thing much better. You can probably get it through your local library. That’s where I found it.
Understanding Celiac Disease: An Introduction for Patients and Caregivers
By Naheed Ali
https://books.google.com/books?id=LyUvBQAAQBAJ&printsec=frontcover&dq=understanding+celiac+disease+for+patients&hl=en&sa=X&ved=0CBwQ6AEwAGoVChMIjKWs5s7oyAIVQUpjCh1gGAOD#v=onepage&q=understanding%20celiac%20disease%20for%20patients&f=false
I am the same way. Always end up feeling so bad :-(. Then I just snap out of it. Working out seems to help me.
Aw. I’m so sorry. I got glutened on Monday. Yesterday, while watching the Marcy’s parade with the kiddo’s I almost cried when Santa showed. What-the-ever-loving-hell was that? My hubs was trying not to laugh at me (in the kindest of ways). I’m always on such an emotional rollercoaster that if there was any doubt about the glutening, it’s confirmed by my craziness. Hope you feel better soon.
“What-the-ever-loving-hell was that?”
I know it’s not funny, but your comment made me laugh just the same. Crazy…isn’t it?
I confess…it made me laugh out loud too–( and I have said it too– only with the F bomb sprinkled in there) 🙂
But it is funny. Not the glutening, of course. Just that I’m a 30 *clears throat* something year old woman and because of some stupid cross contamination, I’m trying not to cry like a 5 year old because “Santa is there!” Gluten makes me grumpy, crazy, etc. I laughed too. If I/we can’t laugh at ourselves for our own stupidity e.g. crying over santa, yelling at the kids for a low cell phone battery, then I think I might really go crazy. Personally, I’d much rather try, try, try to find the little bits of humor in this nasty horrible disease that some days I AM so over it that I DO want to kill myself than actually live with a gray cloud over my head every day.
Not that this has anything to do with anything, but I’m in a horrible place still. Very sick and lots of deficiencies, even as hard as I’m trying. I’ve started going to acupuncture and my new acupuncturist has told me (I think she wants to be my therapist too. By all means, I’m letting her) to find the things that I’m grateful for and empowered by. Well, fricking frackin frack… what the hell do I feel grateful or empowered by when I’m sick all the time or so tired I can’t take it anymore, a burden on my husband, a bad mom because I’m too tired to play/help, and a sh$tty employee? I’m trying to do a gratitude type journal at the request of my husband. I used to have a great sense of humor. As of late, nothing seems that funny. I don’t think I’ll ever get the “old me” back but, eventually, I’ll find a balance for the new me and the old me. 🙂
Bethanne said: “I’m trying to do a gratitude type journal at the request of my husband. I used to have a great sense of humor. As of late, nothing seems that funny. I don’t think I’ll ever get the “old me” back but, eventually, I’ll find a balance for the new me and the old me.”
I’m going to be frank here:
Not time yet for a “gratitude journal”. You are still healing and your ability to see things clearly is still skewed. It won’t come easily right now. .
Took me two years to do my “gratitude post”
You still have a sense of humor. That is not “washed away” by celiac, okay? 🙂
And may I direct you to the blog post of Nov. 21? Where this once dying woman( and I am 50 something -ish) told you all —you WILL “get you” back?
Patience, humor and time….and for pete’s sake —everyone who is reading this: give yourselves a break.
YOU HAVE BEEN VERY ILL. Your bodies are trying to “reboot”—from years of malabsorption–meaning ALL HELL broke loose.
Stop viewing yourselves as a “burden” and a “bad mom”. or a “bad Dad” or a “bad husband” or whatever…..
None of this is your fault. If you were a shithead slacker and not contributing to the household when healthy, that’s different. This is not the case.
BTW …..I said the same thing when ill and totally incapacitated :” I’m worthless, useless, nothing” . (am I really any of those things ? NOPE!!)
It’s the gluten head talking. Trust me.
🙂
Be patient with yourselves…..it will come.
I didn’t see your post on the 21st. Happy belated Birthday, Irish! I do hope that someday I will get the “old me” back. But I’m not sure that I will totally be the old me.
My SIL said to me a while back that she wanted the “Hi, I’m Bethanne” back and not the “HI, I’m Bethanne, I have Celiacs”. I will never be the Bethanne that doesn’t have Celiacs again. Gluten free and sickness is now part of my life. Maybe it’s hard for me because I didn’t have years of battling massive sickness (side note: Sorry for all that have spent years dying. My sister is one of them. As soon as I was diagnosed I told her to go get tested. She’s been ill all her life). When I got sick the year before last, I got sick fast and hard. Now, I deal with pain all over my body, brain fog, and lack of energy. I used to be a very busy bee type person and am not anymore. Every time someone says to me “now you know how to fix all those years of suffering” I don’t know what to say. I didn’t have that. I went from one way of living to a very sick very fast and I am a big believer in being proactive about advocating for my health and made them keep testing me for stuff after they ruled out cancer, chron’s, adddison’s, etc.- the only reason why I think I was diagnosed as quickly as I was.
I do want to thank you for your kind words of not being a bad mom. It sure is difficult not to see it that way when I’m bedridden and can’t wake up to take care of the kids and the hubs has to do it all. Or when I’m crying because I just spent the last four hours heaving because there’s nothing left. I do feel like Celiacs “washed away” my humor and it replaced it with pissed offness ;). Maybe when I’m done with the anger and depression, I’ll get through to acceptance and tolerance. I just wish I could speed up this grumpy process so that I can be the slightly less grumpy person that I used to be. 😀
Oh I was going to write in there somewhere fittingly: I don’t want Celiac Disease to define who I am, but it is very much part of who I am. I don’t think I will ever be “well” again. And, for all of my working career, I’ve been an advocate for one disparity or another. Now, the disparity is mine. I’ve been refused service at restaurants, uninvited to functions, am the only person at work who knows where my duodenum is, and can give a speech about villi and leaky gut to a group of people who don’t give a rat’s ass. So… now that this is in my life, I’m grumpy AND spouting off. I must be very annoying to be around. 😉 You know what I AM grateful for. I have four very important people in my life who don’t care and still love me (excluding my children). Thank god for them. And the fact that I can spout off here and you know what a duodenum is too. (and I never have to see you actually roll your eyes at me). 😀
I see your duodenum and raise you a jejunum. 🙂 Yep, I know all the parts of the GI tract and I did not plan on having a degree in “poopology”. See, you do still “have it”. You delivered some zingers there.:)
I can see you are struggling with believing you will feel more like yourself ever again and going through the inevitable 5 stages of grief.
Yup, anger is the hardest one to pass through. But no one can truly feel well if the body is consumed by too much negative energy.
but, hon.,…you’ll get there when you get there!! 😉 This is your process to go through. Acceptance does make it easier.
I still get pissed off. I hate the pain I live in (and can take no meds for) and I hate the inconvenience. I hate the lost years–mostly for my hubs who had to watch me suffer and lose brain function.
But mostly, I am pissed off for everyone I know who has lost a piece of themselves because of this disease.
Does celiac define me? No, but it does not confine me either.
I have no problem saying I have celiac to anyone—if it is appropriate to the situation. I do not usually lead in with that …LOL LOL
My sister has diabetes. My friend has MS. These are conditions, not our personalities.
You’re still healing. Be kind to yourself. If this were your husband–if the roles were reversed—would you think him a “bad dad” because he is not feeling well? No. So, show yourself the same kindness, kiddo. Hang in there..
Oh man, do I ever hear you on the bad mom/wife thing! I don’t have Celiac (my eldest son does), but I do have Chronic Fatigue Syndrome and Meniere’s Disease (and possibly Sheehan’s Syndrome – we’re in the middle of testing). During a “flare up” (which is really just a SUPER bad time, instead of the usual normal bad time) I feel completely useless and that my family is honestly better off without me, since not only can I not care for them, but now THEY have to care for ME. It’s the worst feeling in the world and I totally feel your pain 🙁
One of the best descriptions I’ve ever heard! So awesome. Sorry you got glutened. been having a rough couple of months myself.
Thank you for the honest post. Coming off of your whole 30 month and good feeling, probably makes this glutened episode that much harder to deal with. Hearing how it impacts not only you, but your wife and daughters, really is eye opening for me because I am usually focus on how sucky it is for ME to deal with this disease- no anyone else in my life. So in the spirit of gratitude, thank you for sharing. Because of this post, I am looking at my disease through a different lense.
Sending you positive thoughts that we (yes I was glutened at thanksgiving dinner and have been in the bathroom all morning) begin healing soon…..
Sending you positive thoughts and <3
Thanks Erin. Celiac is totally a family disease. It affects everyone.
My body is indeed the healthiest its been since I went Whole30. I am hopeful that my recovery time will be shorter because of it.
Kiddo,
Sorry you got hit. 🙁
This happens to me too. Me– Cheery, patient me.
Gluten screws with the brain. Period. If I had not gone GF, I would be dead or in a mental health ward now, drugged up and drooling in my wheelchair. (My doc and I wonder how many people with psych issues are actually just gluten intolerants. Probably millions)
It’s not your fault and you are not stupid nor are you a jerk.
Those “whackjob” symptoms show up in me a few days after a CC, too.
I feel easily angered (the dog next door barking will set me off), I am jittery, agitated (I cannot sit still and I feel like I am on speed), I cannot sleep, I want to cry for no good reason (a hallmark card will have me bawling), my heart goes into mild A-fib and I feel as if someone has dosed me with mega-grouchy pants pills. And I feel anxious. I hate that sensation.Then, my body feels like it is in flames.
I tell the hubs “I feel OFF” –or I am “not myself”….and we both go Uh-OH! because we know what has happened.
Drink a lot of water. Take digestive enzymes.
Tell Mrs D and the girls it is indeed a chemical reaction in your brain.
It’s not an excuse, but it is a valid, medical, scientific explanation.
You are not doing it “on purpose”. It’s like having mega-PMS.
It’s a brain-gut response.
This is why I call gluten kryptonite. It takes us all down.
Hope you feel better ASAP xxoo IH
Thanks Irish. Your words heal more than you know.
Oh my giddy Aunt!!! Your comment saying being glutened is like mega PMS! Wow, first time I’ve read this…I’ve been battling what I thought was PMDD for a long time but am just TODAY wondering if my symptoms point to Celiac Disease. This might explain SO MUCH…the really itchy, bumpy, rashes I get after eating too much wheat that I was told was eczema, the constant tiredness, low mood, and some weird agitation and irritability that hit me yesterday after overdoing the Digestive biscuits the last few days…couldn’t understand what was wrong, I’m not pre menstrual….this might all make sense after all! Thank you, thank you for the information, I need to check in with my doctor and get some tests done…
I am terribly sorry to hear that you were glutened. I am the EXACT same when it happens to my. It takes me a couple of hours to figure out why I’m actin soooo unreasonable towards everything, it’s always that same sigh and groan when I realize what happened. It totally screws with my emotions. Once, a day after being glutened, my mom wanted to help cheer me up and offered to take me to a movie. I litereally burst into angry tears and yelled at her saying that I wouldn’t go to see it in 3D because I didn’t want her to pay an extra 3$ for the glasses. – uncontrolled anger about something completely pointless, definitely gluten to blame.
I yelled at the Dudette because her cell phone battery was low.
Yeah…that’s rational.
‘Dude, once more you have hit the nail right on the head, with a goofy hammer! Been there, done that. It’s so sad and so true for so many of us, but the way you tell it always makes me laugh. And that is good medicine!! Love the last line – if I had a dollar for every time I told someone to…
🙂
Ah Dude. I got glutened about Friday, and didn’t work it out until Monday after I cleared out the cupboards with food cravings. Tuesday my brain went. This time I went in for anxiety and 24 hour depression.
Thanks for sharing. It makes it easier to understand what is going on to know that it happens to others. And to have a hope of explaining to family
Don’t forget that you truly DID have a great weekend
Mw
Sorry to hear that you had a run in with the “gluten blues” and wishing you simply recovery. I know that my system is out of whack because I feel simply “on the edge” these days … it really is amazing how much we come to learn about our bodies and the effects by what we put in it ~ now that I actually “know” and really spend the days “observing” how my body is reacting to foods ~ it sucks when you can’t control the inevitable “out of control” feeling we get when we have been “glutened” or somehow how totally “unbalanced” our system.
Ha I chuckle sometimes – because where we all KNOW it takes time to heal, it takes time to get back on track, it takes time for our bodies to get over incidents of glutening … at these times we have the least patience of all. We are feeling angry and out of control and a bit unreasonable. LMAO … Conundrum wouldn’t you say?! 😉
Heal well my cyber Celiac Friend … heal well.
Hang in there, GD! It’s so awful and saddening when it happens but one thing is for sure, it will pass!!! You do amazing things for us in this community and it is such a support for all of us. Now let us send you support too. I am still learning my symptoms as Im only newly diagnosed but your blog above just helped me to have a really insightful conversation with my fiancé about why Im a snappy cow sometimes! I knew it was because I am “sick from my health issues”
sometimes” and “feel like crap” but wasn’t entirely sure if it was actually the chemical reactions going on from being glutened. So THANK YOU! Scary that our brain and emotions can be controlled by it, but one thing years of therapy for anxiety and depression (clearly now gluten induced) has taught me, it’s that the more aware we are of it the more power we have to move through it. Mrs GD loves you dearly not only for all the good bits but also for the crappy gluten bits too. And so do we!
Hang in there, GD. Sending you healing from across the miles in Australia! You are such an inspiration!! Xxx
We could all wear signs that says “Glutened–danger! danger!
Back the f off”
just sayin 🙂
grammar glitch–doh (oh crap on a cracker, was I hit too?) 🙂
I meant
“Signs that say”
Ha ha. Even with the grammar glitch, I love it. I bought a shirt on cafepress yesterday that says “Gluten makes me grumpy.” Too bad that the money doesn’t go to research and education, but I couldn’t find any shirts that I liked on any .org sites. If I were more artistically creative, I would totally start a line with proceeds going toward some research or a local support group for us (there aren’t any in my area). Alas, I am not artistically creative. The gluten makes me grumpy shirt, will now be my glutened shirt… So, in a sense I’ve got my new sign being shipped to me. 😉
Hmm… gluten free t-shirts.
“Keep Calm and Get That Cracker Away from Me”
“I went to NYC and all I got were these crappy Celiac symptoms”
“The Gluten Made Me Do It”
“This is Me. This is Me on Gluten.”
“Say Hello to My Little Disease” (a la Scarface)
“Kiss Me. I’m a Celiac…but only if you haven’t had any beer or glutonous food in the past hour. And do you mind rinsing out your mouth first? But not with Listerine because it may be cross-contaminated.”
“Kiss Me. I’m a Celiac…but only if you haven’t had any beer or glutonous food in the past hour. And do you mind rinsing out your mouth first? But not with Listerine because it may be cross-contaminated.”
I completely LAUGHED OUT LOUD! This is exactly how I feel on first dates. I swear sometimes I don’t even know if I want to keep trying. A first kiss moment is bad enough!! I’m 26 and I’ve been diagnosed for over 6 years now. I have been going through a total re-work on my diet due to a sudden illness this last year. This one has been more emotional then the last because the pain is worse then the first time. The Brain gut fight no matter how many years pass is hard. It’s so good to know I’m not the only one and people all around are fighting the same problems…and yes the emotional isn’t what people always like to talk about. Thank you so much for being honest…all of you. It’s good to not feel so crazy when I know it’s the gluten…not the REAL me! <3
You beat me to it, Freeky.(this does not surprise me as we think a lot alike–which may be very, very bad for you 🙂
Last night, I was thinking
of that old anti-drug commercial that showed an egg
and the voice over said “this is your brain”
and then the egg is put into a hot skillet and as it sizzles, spurts and burns, he says
“this is your brain on drugs”
well, insert: “this is your brain on gluten”.
Same, same.
it’s a neurotoxin.
Ev Psych really is a great blog. She also posts articles at Psychology Today. This one talks about lithium and depression. San Pelligrino mineral water has a small amount of lithium. I wonder if it would be helpful for a glutening?
http://www.psychologytoday.com/blog/evolutionary-psychiatry/201201/could-you-have-lithium-deficiency
and here are the things that about.lcom suggests:
http://celiacdisease.about.com/od/Coping_with_Celiac_Disease/tp/Glutening-Recovery.htm
magnesium supplements work well for me, especially when taken straight after the gluten irritability kicks in…
Oh yay it’s not just me it’s not just me!!! Alcohol tends to have the same affect so hadn’t drunk for four years and had an inch in a glass of wine last night and now have the emotional resilience of a five year old. Sucky stomach 🙁 had a guy say to me at the function ‘well what do you do? You can’t drink, you can’t eat anything… It must be pretty hard’. I told him I was boring as batshit and also the undercover fun police.
Get well soon. It usually lasts a good 5-7 days for me. A everytime a crappy thought rears up I have to remind myself ‘it’s not me it’s just the gluten it’s just the gluten oh god I hope it’s the gluten!!!’
This post stirs up a lot of emotions. The self-recognition makes me cringe a bit. Thank you for softening it with humor.
I’m going to keep this video clip at the ready. When someone tells me how Celiac disease is only a digestive issue, I’m going to whip it out and play it over my head like Norma Rae.
This post reminds me of the time, just prior to diagnosis, when I threw a full-out tantrum because my family didn’t want to eat at Pei Wei. I pouted and whined and then crossed my arms thinking, “Imma get me a NEW husband that likes Asian food. I AM. Imma get me a new husband. And Imma get me NEW kids that want to eat out and not at home.”
Crazy.
However, realizing this disease robs our body of nourishment and nutrients, it’s easy to see how it can cause a change in our emotional state. I always think of the starvation study done during WWII:
“The study was divided into three parts: For the first three months, the men ate three hearty meals per day, totaling roughly 3,200 calories. During the second part of the study, lasting six months, food was rationed to two calorie-restrictive meals per day; study participants were then monitored for three months for effects. Only THREE MONTHS into the six-month starvation-phase of the meal plan, the participants just about went crazy.
How crazy? Two ended up being hospitalized in psych wards. In order to get out of the study, one cut off his fingers with an ax while on a supervised visit to a friend’s house. Two others chewed so much gum (as many as 40 packs a day each) that their mouths bled. One started compulsively digging food out of garbage cans and lying about it. Another began hoarding photos of food from magazines.” http://experiencelife.com/article/food-crazy/
That last line FREAKED ME OUT. Does this explain my life long penchant for photographing my food?!?! I digress.
I don’t want to be the girl that always cries ‘gluten’ but thankfully my family is starting to recognize the signs. I almost try to over compensate. “I’ve not been glutened. Nope, Nu-uh.”
Thanks to my husband, I was made to realize yesterday that my Listerine has been setting off a reaction. His first clue? My mood.
You’re right. This is a family disease. We can’t live in a vacuum. Well, we could, but we shouldn’t. So, how do we care for those we love?
Irish is onto it.
We care for those we love by caring for ourselves first.
Get to healing, Dude and Dude Family.
Well said. The symptoms can be so sly, so subtle and so easily discounted as something else. It is so hard to discriminate what is which and which is what with this truly evil disease.
Most if not all of my celiac symptoms were mental and nerve related. This week I have had excruciating nerve and joint pain as well as being CA-RAZY!(done in a sing song voice). Crushing anxiety. I am now thinking that I ate something I shouldn’t have. Racking my brains. Piss. Me. Off. I feel your pain and hope you feel better really, really soon. I didn’t even put it together til I read your post.
…ah yes, that BURNING and sizzling nerve pain and ramped up joint and muscle pain and stiffness ? Just fantastic. Next to me, the Tin Man looks limber.
If I get hit, I also go up in flames. Think Joan if Arc. It’s a histamine response. (yes, there is an explanation for it. It’s technical and boring, and I’ll explain it someday to everyone, but it is an enzymatic deficiency that comes from an impaired gut)
Not sure why we get these special “added bonus”symptoms.
(yet, I cannot win the lottery. ha. Go figure)
This is such a timely topic. I got glutened yesterday moring. I was in so much pain while trying to cook a fabulous turkey dinner that I was gulping the hard stuff right out of the bottle in the kitchen in a futile attempt to dull the pain so I could continue cooking. My husband said it was unnerving to watch me cook that meal.
Edgy
PMS from hell for more than just the 6 months prior to gfree.
I even broke our kitchen sink handle at
The Height of my “what in the hell is wrong with me” sickness.
I turned angelic “almost” when it was completely 100% out of my system.
Just think of all the people out there that are medicated and it could be a gluten issue.
Very scary.
We all have to realize how bad this can become for some of us.
One time after 7 hours in emergency, I snapped and ripped off all
my wires connected to me and told everyone who was working what a joke they were. It was rage from years of gluten and had poisoned myself again.
I go to the source which of course are celiac people.
I always bring this out and read to calm myself.
Posted by a celiac in 2005. “This is absolutely me! When I get any
gluten, I go into rages/tears/depression/being nuts. I will go off my
nut.” She never realized before that gluten had been screwing with
her emotions for so long. She freaked me out that day when she
also posted that refined sugar, alcohol and the nightshade family of plants also do that to her.
Another, “Can anyone tell me if it is common for people with celiac to have major mood swings, sudden outbursts of anger and get
very irritable?” She goes on and states my husband is the sweetest man alive but sometimes when he feels sick, out of the blue-mood swings, sudden anger and gets very irritable.
We all know this is not the real GD. Instead of saying thats the alcohol talking, we can say thats the gluten talking. Same with me. I’m usually pretty calm, easy-going about things. You mess with my well-being, my health or gluten by mistake goes in, I usually go wild. HOG WILD! Thanks for sharing everyone. Time to wake up my neighbors. 7:17am Billy Talent (music therapy) Crooked Minds Hope you feel better today GD. Get a mini-keg of Gatorade. Ho ho and a bottle of dark rum.
good Tee shirt
“If I say anything a$$holic, it’s just the gluten talking.”
Hey guys- This is all so familiar. When the mystery assenfuego hits, when I don’t give a shit about whether I live or die or care about my lovey wife or what she’s going through, I know I’ve been glutenated. But knowing that, logically, rationally, doesn’t always help, does it?
Something else- I just got diagnosed with Nonverbal Learning Disorder. A description of it can be found here: http://www.nldontheweb.org/
As we all have Celiac and probably other chronic diseases, ( I have at least 4 that I know of), I have to wonder if they are all interrelated. Celiac affects brain function, this we all know, but can it make other brain problems like NLD worse? I see long, frustrating talks with neurologists and psychiatric types ahead. DAMN IT.
Time for a Redbridge.
Sorry you got got GDude. I
‘m another with the Jekyl/lHyde Gluten Syndrome. For better or worse I have an early warning system – I get very tired within an hour of being glutened – it is a unique type of tired that is clearly different from my legume type of sleepy. Within the day the emotional roller coaster begins. Most days I’m a very positive upbeat person – even when my health has been in the crapper somehow my outlook remains positive – add gluten and all bets are off – my husband and kids run from the snarky bitch I become.
Without a doubt gluten effects brain chemistry – the only other thing that did this to me prior to removing gluten was once in my 30s I finally decided to try antidepressants as doctors had been telling me my symptoms were all in my head for about a decade by that point. I was on one med only for about a month and I almost hit my kids – I would never hit a child and I love being around children of all ages. That night I quit the antidepressant cold turkey which I now understand why doctors advise against that.
Wanted to add one more caution – I read you’ve removed some other foods lately – can’t remember if you went primal or paleo — legumes also provide drastic behavioral/emotional changes in me. When I trialed peanuts I was extremely angry within an hour and two hours after that I was crying uncontrollably. Peas and Beans are like sleeping pills — crazy some of the reactions some other foods can cause until our gut heals. Anyway I thought maybe you ate more than just gluten on your trip that could have added to your less than pleasant attitude.
IH…we call gluten kryptonite here too – ’tis the best descriptive word out there – just wish we glowed a bit green ourselves when glutened – at least our family and friends would know when to duck and cover!
GD and anyone else that got it this week – drink lots of water – I hope you are all feeling strong and sane very soon 🙂
GottaSki raises some good points.
Maybe it wasn’t gluten after all.
Dude, you did have some things you do not normally have anymore–right? pancakes may have bean flours, rice, corn starch..
I had some things this week (rice, rice flour, sorghum flours, corn starch, sugar, cheese) I have not had in awhile— and I feel like crap today.
Not wanna kill someone crappy, but burny, sleepy and a tad grouchy. (you know some of the 7 dwarves of celiac)
Good Morning IH and GD-
Just wanted to be clear – I do think you were glutened – just that other foods may have added to the fire. For me – the effects of gluten are more long lived than reactions to other foods. Most of those only last a day.
Hope everyone is feeling much better today ~ be good to yourselves.
Again, good points, Ski.:)
I just tuned in after a hectic Thanksgiving. I was wondering GD, how you were going to feel a few days AFTER your NYC trip. I am so sorry you got glutened.
We are going to the volcano tomorrow, staying at the Kilauea Lodge. The rest. is renowned for its impressive menu items. I called and asked to speak to the chef, b/c of celiac disease and needing to be gf. The gal on the phone said, we have lots of gf items on the menu. I told her I was concerned about cross contamination. She said she would look into it and call me back. About 15 min. later, phone rings, the gal said, she called the owner, and asked about preparing the food so there would not be a cc issue. He said to tell me it was not possible. So. I asked if I could bring my own food, she put me on hold, called the owner back, and he said yes. Is that way cool or what!?
Long story short, I am so glad I checked in today, I was thinking if I just have a salad and a piece of fish, I should be ok. GD, you have reinforced that I cannot eat at a rest. It saddens me, and our house guest thinks I am over reacting, but hubby spoke up and said, “believe me Jules will end up in the hospital!”
We will give the server a tip based on what the meal would cost if I had ordered, of course.
This disease sucks big time, and my brain is fried from it. I have A.D.D. to the max, have had it most of my adult life. I can’t put stuff back to where they belong, I’m constantly looking for stuff, my hubby is so good about it b/c he is a neat nick, and has to put up with my stuff left everywhere, visualize pig pen, but I leave a trail of stuff. I get the bills paid, but I don’t get the bills filed. i go to a writer’s workshop, each week I take something to read, that I have written, recently it has been different chapters of a children’s story, each chapter is still in the car, in different folders. Receipts are in the car, beach chairs, beach bag, towels. When I garden, the trowel is on the lanai, along with some buckets, soil, watering cans, they should all go back into the garage. I start one thing, then get busy on another and have not finished the first project or two. It is crazy.
On my t-shirt. “I have celiac disease, do you know where my stuff is?
I want THAT t-shirt! Aloha Julie, you’re my sister from another mister! xoooxooo Recently began gf and I can now walk into a room and actually remember what I went in there to do. Thank God!!!
oh yeah…
Buying the same book 2X because you forgot you already owned it?
Screwing up the checkbook balance and incurring a debit fee?
Burning a pan ( and almost the house down) because you started sauteeing garlic, then went in the other room just for a second…and stayed there chatting away with the hubs?
Gluten head is expensive.
Getting your brain back….priceless.
So gluten dude, after all, you too blame gluten when it suits you.
That makes two of us. 😉 😉
IM, what exactly are you trying to imply?
The Gluten Dude says that he’s an a**hole because of gluten. 😉
Even trolls are welcome on my site.
Ahh, I’m so glad I’m not alone when it comes to mood swings after being glutened! The way you summed it up is how I become (though I am not a potty mouth).
I discovered I may be gluten sensitive in August this year and I went GF and a little paleo and since then I wasn’t strong enough to stick with it so I was naughty on occassion. Then I was naughty little and often so I was eating a few bad things regularly and suddenly my mood was off and I had a temper. It wasn’t coincidence. I’ve given up with doctors and anything they’ll say to me. I have a paleo coach and I couldn’t be any happier!
You should check out what Dr Rodney Ford has to say about gluten sensitivity. I read samples of his books online and could relate to everything. The guy is a genius!
Loved the T shirt suggestions! Really made me laugh!
Sounds like Gluten Dude knows how it feels to have hormonal mood swings! You feel sad or angry, and even realize you are over-reacting or have no good reason to be so sad or angry, but you can’t help it!
I get a bit cranky when glutened but I think its a natural amount of crankiness for the situation. It was worse when my iron/B12, D, etc were very low.
HI IH!
Hi Kay,
It’s nice to see you. Still enjoying that tiramisu?
I avoid cornmeal now–like the plague.;)
More TEE SHIRTS:
“Celiac–it ain’t for sissies”
and one for us to wear because we see gluten a$$holery in others still not diagnosed:
“Hey, you–yes, you acting like an A$$hole! Put down the bagel and step away from the gluten. I have a gun”
I had a long week…
How about Spasming Sphincter Institute for Celiac Studies?
I can’t stop laughing! David – say that 4 times fast!
hahahahaha!
How about one with something that looks like a cake mix box and says “Instant A$$ h@@@@. Just add gluten”
The gluten made me do it
If bacon grew on trees, I would be a vegetarian.
Oops! I got distracted. :0
(you can never go wrong with bacon!!!)
I loved GF CANADA’s
words on another post (recall the young man “new celiac” who wrote to us who was feeling suicidal?)
In part, he concluded with:
” ……it still blows my mind what a piece of bread did to me”.
Now, there’s a tee shirt.
Oh that is awesome! I’ll take 2…….
Ok kiddo, now I have to tell you something funny (sort of ?!)
I was writing to you via email on Friday to say you had inspired us to grab life by the stones and go for it so I could cross off the one last thing on my “things to do in 2012 to regain my sense of normalcy bucket list” (crappers, that’s a long title) 🙂
which means …going to NYC–a place we love, love, love—where we were married ….and so, we made a few calls and a few email maneuvers and now, we are going to NYC for our 15th anniversary next month.
Yup, The Rockettes, Santa and all. Reservations at Craft.
I was so excited.
Then, I saw your “A$$hole post” …and how you got “hit” and my heart sank…….and I just could not tell you. 🙁
But now some time has passed —and I hope it will make you roar with laughter–the irony of it all.
FWIW, My vote? the sushi place.
I just do not trust that one. (they said it was made with gluten)
The other 2 places are consistently solid with the GF community
reviews for safe dining(and Mrs. Freidman has celiac!!.)
They aren’t going to screw that up.
At least, I hope so……..she said with a sigh… 🙂
Most likely the sushi…agreed. Will add it to my Do Not Visit list.
It is so crazy all the things that gluten does to people.
After too long with stomach issues that haven’t been solved with a gluten free lifestyle (and no eggs or bacon, not pork, just bacon) I finally got in to see a GI specialist.
Who is a sadist.
And asked me to eat gluten at least twice a week for the next month and then go and get tested for celiacs (I never got tested, I cut out gluten through process of elimination).
After all of my ‘but but but’! I agreed. He gave me some kind of medication that is supposed to stop/suppress a lot of my physical symptoms. So last night I started this ‘experiment’ with a sandwhich. And the only way I can think to explain how I feel today (and last night) is ‘weird’ or ‘not myself’. Physically I feel okay (last night it felt like I had a rock in my stomach) but emotionally I feel weird.
Just hoping this turns out to be worth it and that this doctor knows what he is doing. Sounds like he thought getting a proper diagnosis was less invasive than a biopsy. Cripes.
You need to be on gluten for an accurate diagnosis. You will still need the blood work and the biopsy to confirm. Sorry 🙁
I am currently eating gluten (and putting my life on hold because of it) and then having the blood work done. They didn’t say anything about a biopsy, my follow up isn’t until February and by then I will be back to being gluten free so that isn’t even an option.
They really just need a biopsy or bloodwork to diagnose. I have a friend who can’t have biopsies done and was diagnosed through the bloodwork successfully.
While positive blood work can diagnose — conversely negative blood work does not mean you do not have Celiac Disease. Wait for the results of the blood work to remove gluten if at all possible.
Once gluten is removed – healing begins – while this is the ultimate goal – it is important to get as much data as possible before gluten is removed.
Gottaski, I was gluten free for nearly two years until I saw the specialist.
As of December 17th I will be back to being gluten free again after getting the blood work done.
I have had to put my life entirely on hold because of this. I had to make work aware of the situation because I was too sick to go in some days, I don’t get paid if I don’t go to work. I was training for a 5km race in January, I had to stop though. I don’t have the energy to run down the street let alone that far anymore.
So no, I will be going back to being gluten free as soon as possible. If bloodwork can’t give me a proper diagnosis then it probably isn’t worth it. I don’t want to lose my job, or my place to live, or well my exercise routine is gone completely now. I go to work and then go home and sleep I have no energy and this is only week 3 of 4.
I should probably add that my follow up doctor appointment isn’t until February which is why I’m not waiting until the doctor’s appointment to remove gluten again.
“Benjamin is nobody’s friend. If Benjamin were an ice cream flavour, he’d be pralines and dick.”
-Wayne’s World
Dude i hear you. Total freaking chaos equals my past week. I was food poisoned last Sunday. Managed somehow to make it to work all week..don’t ask about the commute-it was not pretty. Thursday, Thanksgiving, i had had enough. Went to the ER and was treated and released.
I am glad it happened. These past 10 months living GF, self diagnosis of gluten intolerance….glad it happened. Made me take a step back and look at my life. What have i been doing to my body? So the attending told me something very simple that i heard from Gluten Dude a few weeks back. Keep it simple. Eat real foods. Food that is good for you. Duh. i finally got it. Hit me in the middle of the ER holding my daughter in my lap on a gurney watching the Macy’s parade. I need to take care of myself, i am damaged but that is not going to control me. I got this.
Cheers y’all…
Jersey Girl
It’s a learning process Jersey. Glad you’re seeing the light.
Keep the movie quotes coming 🙂
GD,
Thanks for your blog.
My 17 year old son was diagnosed with celiac disease in January of this year. I have been trying to put the pieces of the puzzle together as to when his symptoms all started. Looking back a few years, 7th grade was the beginning of fatigue, migraine headaches and emotional issues. My husband and I thought he was just going through puberty. Now we know that wasn’t the case. It’s hard enough being a teenager and with celiac disease even harder.
Since his diagnosis we have been 100% gluten free at home. Eating out is a major concern and he has been glutened a number of times. His reaction to gluten is spot on to GD symptoms and as his mom I know immediately.
In my online search for information I came across an article I want to share written by James M. Greenblatt, MD., “Is Gluten Making You Depressed” -psychologytoday.com/blog/the-breakthrough-depression-solution/201105/is-gluten-making-you-depressed
Dr. Greenblatt has also written a book called “The Breakthrough Depression Solution” which I am currently reading. He addresses celiac disease and vitamin deficiency. What I like about this book is that this doctor treats individuals in a holistic manner instead of prescribing someone medication to bandaid a problem. He gets to the root of the cause which is refreshing! What frustrates me to no end is that most M.D.’s out there have no clue about the effects of celiac disease.
As a result of reading Dr. Greenblatt’s book, I have started my son on supplements that are improving his overall wellbeing. He is taking, pure encapsulation brand: Neuropure, B-complex, fish oil, vitamin D and a probiotic. No, I am not affiliated with this company or Dr. Greenblatt. I just want to share what is working for my son.
Keeping my son healthy is paramount! Soon he will be off to college and that scares me even more. Any advice out there on gluten free in college?
Awesome comment Chime…thank you. I agree that getting the right vitamins in you is key.
There are a select number of colleges that offer a gluten free option. You may want to check out this page for some resources:
http://www.celiaccentral.org/college/
Best of luck to you and your son…
GD
WoW Dude what a great blog you have. In 1978 when my acupuncturist answered my question: “When will I be able to eat pasta again?” With “Not in this lifetime” I laughed at the first joke he told in the 4 years of treatment, then noticed he had a totally earnest expression on his face. Once we established that he wasn’t kidding I slipped into a feeling of being an alien on my own planet. Believe me it was lonely back then, there wasn’t even a word for Celiac other than picky.
Food allergies cause every cell in your body to bloat, like PMS, that’s right Dude, it’s a lot like having PMS while you have the flu. Can I get a ‘whah whah’ from the ladies? And as your brain is programmed for survival, it screams. Irrational thinking and reactions, self loathing (because you’re actually causing the suffering) cramping, discharge etc. cannot be ignored. What’s not to love? No wonder you’re self loathing, you and everyone else is hating you, finally something in common with everyone!
We are in the combat zone, HOLIDAYS, hidden belly mines of gluten (and in my case dairy and sugar as well) are everywhere, and they’re all looking so delicious and cute. I never leave the house hungry, I never attend a party without a good serving of protein, sometimes in the form of a protein drink that is safe and easy to carry along. I lead myself not into temptation, I stay away from desserts and cakes and gravy that I don’t make myself. So sometimes I bring a dessert as a hostess gift that I know I can eat.
People lie, they don’t believe you can’t eat what’s normal, they think you want attention. I never discuss my allergies, my intestines, my bodily functions even though I’m asked a lot because I’m an Organic, Gluten-Dairy-Sugar Free Chef. If someone mentions that they’re recently diagnosed I take them aside for a conversation. I don’t bore my fellow dinners, my family, my friends or the wait staff. If going out with friends I check the restaurants menu on the website and I call ahead to make arrangements, if there is no way around it , “Italian? You know I cook Italian all the time, can we go for something else like Thai maybe?” Because I don’t want that kind of attention or for it to define me and I’ve made a career out of it!
My dealing made me a master chef, it began with family holiday meals and I pretend I’m a control freak and that’s why I do everything myself. OK it didn’t take much to convenience anyone of that. But maybe my food allergies are what made me a control freak. And the jokes on me, of my friends maybe 2 are left that eat gluten, so where I never got invited to dinner parties because I’d bring a macro-biotic meal of rice and tofu to eat while everyone else dinned, I’m invited to all my friends parties now, often as the chef. And my friends didn’t change their diet did.
Once your symptoms and the gluten gooey uey goo is gone you will be able to absorb nutrition and feel better than you’ve ever felt in your life. On the journey you may come to believe as I do, that what we eat is better, exempt from the industrialization of wheat and food. Eat a well balanced diet and enjoy it all. Every now and then you have to wake up and smell the coffee and once in a while have some because I like being jacked up and it goes so well with my More S’More Pie that’s gluten, dairy and sugar free! Shhhh, nobody else knows.
A toast (too soon for you to hear that word?Think burnt toast OK now think Champagne) to all of your good health and good appetites.
Thanks for opening up to us Elaine. Loved everything you had to say. 1978? Can’t imagine.
Yes, GD 1978, hard for me to believe myself, I consider it the most valuable life lesson I’ve had. In time I’ve learned that ‘the worst things that have ever happened to me were the best things that ever happened to me.’ and you can quote me on that one.
I have found pasta to eat that I have served to the general public without them having any idea that it was different, because life without pasta was like a cloudy day and I got very bored eating brown rice, veg and beans with Tamari every day, and that was my diet for over a decade. I do enjoy vegan meals a couple of days a week and part of my clientele considers me a most amazing vegan chef.
I am super healthy now, super energetic and super strong, much more than my contemporaries eating ‘normal’ food. I’m here to testify that the light at the end of the tunnel is golden.
Thank you for posting this. I’m still new to this lifestyle (gluten-sensitive not Celiac) so I’m still learning. For me, when i’ve been glutened I tend to get an immediate migraine (within the hour). This then makes me sleepy and makes me whiney and “out of it” for the rest of the day or sometimes two. I didn’t really think much of the whininess and the “out of it” until you mentioned feeling “chemically off.” I think that kinda sums it up.
Yep. Mrs. Dude says I get “pasty”. How’s that for a visual 🙂
hey…that was my color for 3 years..:) .”pasty”..not kidding, that’s the word my mother always called me when I was sick. Pics of me during those days pre-DX—gruesome.
Wonder if “pasty” is a clinical term 🙂
One last thought on New York contamination…
I’ve been gluten sick for about 10 days and just figured out why. Started using a new all natural shampoo on my dog and myself the day before I got sick. Yep, it’s loaded with wheat germ and it’s the greasy kind that doesn’t rinse out completely. No wonder I had this gut feeling that snuggling my dog during this pain and agony was making me more sick. I Googled and found a couple of guys who commented their girlfriends make them gluten sick. This is cooky but maybe the hotel products or your wife were contaminated like my cuddly dog and my hair.
Anything is possible in the world of gluten…
um yea crazyyyyy fighting with my bf for 3-years didn’t know why!! was late to college every day,,,,BRAIN FOG would fall asleep in class. made up each class so i was going to school double time for 2 years, one more semester left ,,,i was late half an hour to my last final and the professor said you are late you failed. the school dismissed me for a semester coldly. even though we are a school of holistic health and i was getting treatment in our acupuncture clinic for two years, skin rash headaches tummy aches hmm maybe she’s not well???duh….i have to write a letter to the dean for re-admittance who the administration would not even let me speak to in person. are they kidding me ?????? i am self diagnosed celiac on august 20 when the full force DH on my arms tipped me off. i went to columbia university ut they dont take medicaid. going monday finally somewhere. but yea JERK AND BRAIN FOG AND EMOTIONAL
The gluten antibodies stay active in DH for almost 2 years. The skin manifestation of celiac is easier to diagnose, if you can have it biopsied properly by a dermatologist who “gets it”.
Yes! even off gluten, you can have the area around those lesions biopsied and get a firm Celiac diagnosis. I see it time and time again.
Good luck, hon–you have been through a lot —and deserve some answers.
Thankyou, I’ve had eczema and dermatitis since I was about 3 months old, I was bottle fed this really explains a ton to me. So 2 yrs….. this is why I feel better fr almost 6 wks and now I feel as you all call it brain fog which I was told was from fibromyalgia, which I have decided was celiac in disguise!!! So, my skin is worst than it has been in yrs. My hands are swelled and covered in eczema so badly that my lack of immune system couldn’t fight off an infection and to compile things out of know where I need a 2 root canals. Not to mention I feel emoional and short fused. So I ask did the antibiotics gluten me??? And or can it simply be working out of my system?
I feel stupid to ask but, ive been told the only stupid question is the one not asked.
“So I ask did the antibiotics gluten me??? And or can it simply be working out of my system?”
It’s hard to say. I do not know your health history and I am not comfortable guessing. Sorry hon. 🙁
If you are still feeling poorly at 6 weeks GF, it is really not that unusual. (I still felt awful at 15 months).
There are so many kinds of rashes as well as urticaria , etc.
If you have a skin rash this is intensely itchy and oozey—please have a doctor biopsy it to be sure. The only treatment for celiac is a GF diet, but there are medications for DH that may help alleviate the itching and burning.
I hope you can get some answers and relief soon. This is an up and down road to healing, unfortunately.
Thank you.IShew the history. I’ve:-D alesophagusphaguss been told that I have auto immune disorders, this all started when I was young I was constantly sick and having muscle pains and of coarse doc call that growing pains which if that was it ouch. I wouldI always be covered in rashes and get any illness that walked by me. My parents ran me all over to doc of all sorts nd out the cause. They were evhe’stold I was just unhealthy and what ever itis is hard to narrow down but would come out innutritional. At 19 I started culinary school…ironic I know, this is when things got crazy. The third week of school I got put in the hospital w an abscess in my throat, dehydration and a rash which turned out to be shingles. (Yes I had chicken pocks at 4.) After. A wk of tests, exams, and tons of blood work the conclusion was highly anemic and low vit d and potassium and several more. Said it was just college life, thing was I wasn’t eating bad and I was getting rest. Then the neck pain , muscle spasms, unexplained low grade fevers. My job you ask… bread baker!!! Right eh. So I continued to get worse and lostthat job thank goodness. I could barely get out of bed, yup hospital again 6 wks after the 1st time. Now bronchial ph and reoccurring shingles. I went to allergy clinics and was allergic to grass, mold, mites. I don’t remember food testing tho. At this point I stayed on antibiotics, steriods and vitamins for yrs to maintain. Ahout 6 months I managed and then slipped in a kitchen and dislocated my hip and slipped a disc, lower 5. So then that drama started, became particularly paralyzed. I couldn’t move my left leg at all and had a cath to pee. Awesome. Then surgery which fixed it, how lucky I know. So stayed in pain and on pain medicine for yrs. Problems again always something. Got myself off all that by 25, and just excepted feeleng chronically fatigue with occasional diff rashes and the flu 4 to 5 times a yr. Now i am 36
And in the last ten yrs …..Barret esophagus, ovarian cysts, ic of bladder, diverticulitis, early ra, fibromyalgia, anemia, heart inflamation, liver and spleen irregular test results, so I now know from biopsy of small and large intestine and duodenum and my hands i have celiac disease. Geesh sorry for how long this is. …… i have to mention thru all this my hubby has been my rock. 16 yrs so he has lived it and his shirt would say… i survivived a celiac dx!!!!
I am open for any suggestions:-D: thank you again
Danielle,
My experience with eczema is clearly linked to dairy allergy, it begins around the sinus cavity and hairline and if you stop eating dairy for a few weeks and you have one little-itty-bitty bite, you will break out somewhere in that area.
And the autoimmune system lives in your intestines so when they’re shut down so is your autoimmune system. Gluten can be what is shutting down your resistance.
I maintain a gluten, dairy and sugar free diet, I am extremely healthy and I was once unable to maintain weight, couldn’t digest anything and was very sick and in pain all of the time, even as a child.
Your body is trying to tell you what it needs, it is programmed for survival, listen to it, love it, and give it what it needs, you’re trapped in there.
When you hear the right things it will ring true to you, see if anything resonates with recipes and tips at good2eat4U.com
Thank you !!!!
Thank you!!
Danielle, I’m so sorry you’re going through this. I had 2 weeks of gf when I felt good. The rest has been between tolerable and horrible. Thanks IrishHeart for sharing it was 15 mos for you. Sure do like the encouragement not to give up hope. Danielle, the antibiotics wipe out your good bacteria and as well as bad so probiotics could help your body overall.
They don’t agree with me but I haven’t tried the non dairy based yet. I’ve given my son probiotics religiously since he was a baby. If I run out for more than a week or 2 he gets a horrible attitude and his eczema flares up.
Aw thank you , I am on a ton of supplements including prosynbiotics and am working with a nutritionist…. and also my 3 yr is on pro b to and gets sick if she misses more then a couple days. Hope your feeling well.
Sorry for typos my tablet kept messing up during my short story…. 11
Danielle,
I am sorry to hear your story–as it parallels mine in many ways.
You are recently diagnosed, so you have a ways to go yet.
Do not despair.
I just wrote a rather long post about this on the dude’s most recent
blogs “Abandoned by the medical community” and “A celiac gives thanks” and maybe some suggestions there may help?
I feel for you, hon. You are not alone.
After a long course of steroids and antibiotics, you definitely need to be on probiotics. I had no detectable good gut bacteria upon diagnosis and I know what that unbalanced gut flora will do to a person. Now, I am right as rain and have no bowel issues or gastro problems (and I was a burning mess from mouth to rectum for YEARS)
I still continue to work at healing, however, as I have muscle/joint/bone and nerve pain.
Just hang in there. Keep your diet clean and I hope you start to turn a corner soon. (hugs) to you.
Ahw, thank you I am on it for sure. Please know how compassionate you are woman!!!! I am sorry for your battle and glad you are having a better quality of life as I know I will too…. this is rough for any one and really rough on this control freak:-P
Later.
Oh yes…I know what you mean about feeling like the control is taken from us when all hell breaks loose, but you CAN control this beast.
And you will tame it! Rock on, sister.
I did not get the nickname Warrior Princess for nothing–and now, you are one, too. Celiac–is ain’t for sissies.
Hang tough. 🙂
whoops, now I have typos shooting out of my laptop….sorry 🙂
That should say
“Celiac–it ain’t for sissies”
Thank you for the advice and all the info it is answering so many things, although I am experiencing a drunk feeling, I have been running into walls and mis judging distance. I feel this is related to this celiac disease but I used to feel this way all the time and changed my diet in early oct and just after 5 days it stopped. I am wondering why it has come back….. Geesh I don’t eat out period!!! I pack meals like I’m back in grade school. Of coarse dr wants to do a m.r.i. now. I feel like an experiment to them. Any clue why this is happening… I dont have a sinus infection or anything currently on that order at least. Eh trying not to be frustrated, thanks for any in put or reading advice ya all have… yes ya all I’m a tn gal and dumped the biscuits.
I am an diot…… just noticed the off brand of marshmallows my husband got has modified food starch!!!!!! I glutened myself didn’t I 🙁
I feel irish wrote about this but can not find it….. I’m not completely posive, I have read more in the last 2 months than I have in years.
Danielle, the modified food starch in marshmallows is likely corn maltodextrin.
If it were WHEAT, it would be labeled as such.
As to your dizziness and disturbed gait., you may have what’s called positional vertigo.
I have had terrible bouts with that myself. It may have nothing to do with being glutened. Google it and see if the symptoms fit.
And see a doctor. There is a trick to getting it to stop.
Good luck, honey.
I so hear you on this one. When our family mistakenly ingests gluten the worst part is how angry it makes everyone. We say things we would never say normally. Lots of yelling. It’s crazy. It’s amazing how much it affects us. The headache and brain fog, too. Along with being so tired – so unbelievably tired. No there’s a lot more to this than just bloating and gas. So much more!
That’s why it drives me nuts when the media portrays in mostly as a digestive issue. It goes so much deeper than that.
When the title showed up in my twitter feed “Instant A**hole . . .Just Add Gluten” I couldn’t imagine what your post could possibly be about and had to read it.
We been gf for the last ten years. We just went though being “glutenized” as we call it by who knows what? We’ve narrowed it down to three things and still trying to confirm what exactly it was. Hate that it makes us a little afraid to eat anything.
A few years ago they had a program on tv called Mystery Diagnosis about Celiac Disease http://www.youtube.com/watch?v=j7LBhiwk5V8 and it completely changed the way I looked at gluten and celiac disease. Why? Because this little boy didn’t have digestive issues – it mainly affected his mind. Makes you think. Whole lot more to what gluten does in our bodies than we know. It made me understand all my daughter’s mood changes and my own.
And now they’re reporting that there are nearly 200 medical conditions related to gluten.
Wow…that video was something else. Thanks tons for sharing. May even deserve its own blog post.
Disturbing video, but a good example of what are called “extra-intestinal” or atypical symptoms of CD. This is a head- to- toe disease affecting every organ and body system.
If the gut is impaired, there is no absorption of nutrients.
“if he had been left undiagnosed, the next four years would have left him incapacitated” says Dr. Green in that video.
This is what was happening to me and so many other ADULT celiacs, too whose doctors felt this was “just anxiety”, “psychological stress” “menopause” “fibro fog” “getting older”….blah blah blah….
My brain was so affected and now, I am back to normal.
These are the ramifications of malnutrition pure and simple.
Shame on the doctor who did not tell the mother it was genetic. He should lose his license to “practice” medicine.
How many people are in mental health wards who are probably malnourished celiacs? Millions???
@The Gluten Dude Thanks and I just did a blog post on it, too, on my site. The video had been taken down and was back up again. Glad to have found it because it was one of the things that’s always stuck with me. It really changed the way I viewed how gluten affects the body and the mind. People mistakenly always think it’s intestinal or digestive issues and it really is so much more than that, isn’t it.
@IrishHeart When my daughter was first tested for celiac (ten years ago) by a lab and I told her doctor about it – she didn’t believe in it too much but told me to sure go ahead and try it if I wanted to. I know many older adults who spent a good part of their lives thinking they were crazy because it took so long to be diagnosed. I can’t imagine that.
And actually you’re probably right about the mental wards – a study was done and it showed that the patients diagnosed as depressives had the highest number of allergies. 50% of alcoholics tested were allergic to egg white, milk, rye and barley. And 80% of schizophrenics tested were found to be allergic to both milk and eggs.
To me that is just so, so incredibly sad. To know that just a change in diet might free them and allow them to live normal lives again but instead they’re prescribed every medicine imaginable.
There are many Pub Med articles that discuss celiac and gluten intolerance and the various psych/neuro manifestations (I had plenty: ataxia, parasthesia, cognitive issues, burning nerve pain, visual disturbances, insomnia, hallucinations, loss of taste, etc) and the medical community is just not reading this information.
Neurologists could be DXing celiac left and right. (I saw 4 neuros–none of them even thought of it)
My GI doc and I speculate people are just given anti-psychotics and left to hang. I met several people whose “schizophrenia” vanished off gluten.
We push and push for celiac awareness– but we have so much work to do.
@IrishHeart I agree. Now whenever I hear of someone with alcoholism, depression or schizophrenia I think could it simply be a reaction to gluten, milk or egg. It’s like you want to go around saving everyone!
Unfortunately doctors don’t often look at the food or the enviroment or even the emotional reasons for the causes for most illnesses – they just treat the effects from them.
When my nephew was 5 (more than ten years ago) and he was first diagnosed my brother and his wife had to go from doctor to doctor. And here was a child that was only 28 lbs. at 5 and yet many of the doctors they took him to never thought to check for celiac. Thankfully they found one who did.
“It’s like you want to go around saving everyone!”
yes, Celeste, it’s an affliction I have now. I “see celiacs everywhere”–and most times, I am right. 😉
All we can do is educate and pay it forward.
Doctors do not resolve symptoms, they merely treat them.
That has to change.
ADHD, depression, bi-polar, borderliner personality dissorder, anerexia/bulemia, suicidal, fibromialgia, sleep disorders, anger management issues, anxiety, irratic behaviour, risk taking, IBS, gall blatter and uteris removed (i’m under 40), excema (me and my kids), chemical sensitivty, weight gain, weight loss, constipation and the big D at the same time…or seperate, constant stomach aches my whole life (as early as I can remember, I remember being in pain)…a lot of miffed doctores (one said to me “maybe your just more sensitive to your body’s changes than other people” – I was puking every day for months and not by choice, but I figured I must have been making it happen somehow) tests and tests and more tests (oh I forgot to mention allegies & asthma oh and alopicia – not sure if that will go away no I’m GF but I hope) – brushed off by doctors…part of me is sooooo happy, I could cry with joy to know I’m not crazy. But it also breaks my heart to realize how much suffering when all I had to do was not eat wheat (explains why I always felt so great when I was supposidly anerexic – I tried to tell them then that food made me sick but no one believed me) Now I’m just like all of you, I’m happy, upbeat, ect…then I took communion and a fews days later had a small fight with my husband and sent him a “I hate living” text – poor guy his mom had mental issues, was I in my non glutened mind I would never…and 4 days later I was like “oh I’m sorry” and I just made that connection right now. No wonder I’ve been on close to 20 different anti depressant, anti crazy (I call them madness medicne – and I told my doctors a few months ago – about the same time I went GF, even though blood tests were negative and my Dr’s don’t think that’s it – even though I have sooooo many symptoms…whatever….my madness doesn’t like to be medicated), trying to treat my ADHD, anxiety etc and wonder why they don’t work, make me sicker, make me crazy….and what do you know it was gluten this whole time (I’m sure of it, even if my Dr’s aren’t) and OMG I’m not alone….Im really crying now and it’s been weeks since my last glutening 🙂 Best blog ever…so much love for all you folks right now…super major cyber hugs sent out to you all 🙂
Back at ya Val 🙂
Thanks for this. My 6 yr old son reacts to gluten the way you do. Have you found anything to take eat it do to counteract the symptoms? With him being school age I have to keep him home for at least a day when this happens. It can take 2-7 days for the “grouchies” to disappear depending on the amount of gluten he ate. Any help would be appreciated greatly. You can email me privately.
Jen
Hi Jen. There are a lot of great tips on this page:
http://glutendude.com/celiac/help-i-have-two-days-to-heal/
Dude thank you for being so honest about this. My biggest symptom when being glutened is depression and rage. When I was sick and undiagnosed my husband and I fought for months, I almost left him several times. Really sad. I completely became a different person. I thought many times the world would be better off with out me in it. Now I am so paranoid about getting glutened that I eat only a limited amount of food and have not been out to eat in 8 months. Sad, but it is worth it to me since I do not want to lose my mind (and family) over stupid gluten!
Hello;
So as I’m reading your blog I realize how new I am at this only being diagnosed 2 months ago. I read everyone’s comments which helps me immensely. I had a bad reaction to something gluten as well. Sunday my husband brought me home beef vegetable soup which was assured was gluten free. I aye it since it was a nice touch that he thought of me after a whole day out golfing. Monday. My stomach was swollen, I was sick and grumpy. Still went to my meeting fr work I faked it well because my clients were happy with my presentation. I drove home to o my reports but instead I went straight to bed and only got up to run to bathroom to throw up. Tuesday I made myself go to another meeting, but never made it. Had to pull over in turnpike to release myself once again, that was not fun. 15 minutes later and meeting cancelled I drove home didn’t even say a word to my husband and fell asleep. Slept until Wednesday morning when finally I began to feel human again and had some color back on my face. Lesson learned, it’s hard to be the newbie some times. Thanks for all you do Gluten Dude.
Hang in there, it is a lot to learn, sometimes we gotta learn the hard way.
Thanks again for sharing, sorry to hear you got gluttoned. On top of celiac I am going thru an elimination diet after showing toxic levels of several “safe ” food additives. guess who gets exposed to these chemicals at work multiple times daily? This past yearbhas been crappy. So now the fight for short term, FMLA and ultimately workers comp begins, the stress of the diet is bad enough, top that with financial worries and a husband flipping out over my lost wages. Yes he went to the dietician with me but he still doesn’t comprehend what I feel like. Been there done that ” would it be so bad if?” scenario this past couple weeks at least twice. Then I pray for help for help and just go back to bed.
Sounds like a weak excuse. That’s the same one my wife uses when she beats me.
Hi Gluten Dude, recently diagnosed I have been gluten free for four months. The first few weeks were euphoric as anxiety, rattiness and fatigue all disappeared.
Now in general all is good, however I still learning how not to gluten myself. Last week I got glutened, and my rattiness got to the levels in your video, it was quite scary and shook my wife. She was late by about twenty minutes and I went into full divorce mode. My reality seems to return once I have thrown up. It then feels mentally like you have had a badly behaved drunk night and need to apologise to people who don’t quite believe you.
I guess my question is, once gluten free, have you noticed that when glutened the effects seem to much worse than when you were regularly on gluten? Before I went gluten free I could be cruel and cranky (which has cleared up!!) but nothing like when glutened now.
The thing about celiac is that there is no “one answer fits all.” It’s certainly possible that it could be worse now that you are gluten free and likely it is.
Thanks, definetly feels worse since being gluten free (5 months) but maybe because the non glutened times feel so much better, just have to work harder at avoiding it so my wife doesn’t get to stand back in amazement at another out of leftfield rant. ( I should point out that ‘it shook my wife’ as opposed to the ‘and shook my wife’ above – Brain fog when writing and now realise it looks terrible… The funny thing for me is that I can’t pick that I am glutened, it needs someone else to tell me I’m being a git untill I throw up and realise, usually a period of a couple of days.
For me the biggest game changer has been the non gastro ones as you intimate in your original article. No more morning anxiety, fatigue, joint pain and restless leg. Much more tolerance for everyone and everything, it is a real blessing.
Thanks for this thread. My wife was able to read and understand that yes it can turn you into a temporary total jerk. We have been able to come up with a plan to cope if I behave like that again (generally involves me crawling behind a rock until she says I can come out) – this plan will also help my work colleagues…..
Kind Regards
Neil
thank you Neil, and Gluten dude 🙂
I too notice the symptoms are more abrupt and uncontrollable the longer i have been abstaining from gluten.
I had actually given up on marriage or relationships, but this gives me so much hope. I feel less like an alien for thinking suicide wouldn’t be so bad.
Karen,
one thing I have discovered is that the stomach has such a big part to play in how you feel mentally. Hang in there with it, and you’ll get better at not getting glutened and life will seem more positive. I know that sometimes the mind can go to places where it seems all is lost, and for me being glutened will only exasperate that. Get well on the Celiac side and whilst it may not be the whole answer, it will give you more strength to deal with life.
Just this year learned I cannot have gluten. Whether it’s celiac disease or intolerance., we’ll never know, because I’ll never eat it again on purpose. I found this thread because I am trying to figure out what’s happening with me and these episodes of rage, more frequent now that I’m gluten free. A little dab will do me…wrong! Incredible Hell B. There is no reasoning with me (or we’d make up a safe word, independently considered by my man and me after night before last). I’m like a raging two year old when I get glutened. I can feel the chemical reaction sweep through me, a wave of rage. Yikes! No more miso soup for me. Apparently it can be made with barely and other grains, and this seems to be one culprit. Thank goodness my man figured it out; the reaction appears within an hour or two, confirmed by subsequent, more traditional symptoms. I do believe the neurological/psychological effect is real, although there isn’t much information about it. Again, thanks for posting and the chuckle Gluten Dude. In addition to avoiding gluten as best I can, I’ll be meditating daily now. Perhaps I can effectively reduce the ammunition stores at the very least?
Glad you found us…
I don’t know if you know about Gluten Defense it is a dietary supplement that helps digest hidden wheat and dairy.
It is sold in health stores and the Vitamin Shoppe, I like to take it daily. THANKS FOR ALL YOU DO !!
I didn’t realize how much my mood was effected until I gave up gluten. I was angry all the time but I contributed it to a million different things but I had never been an angry person. I also got angry fast which traditionally had always taken a lot to make me angry. When I came off gluten it was like someone gave me a happy pill. Initially I thought it was just because I felt so ridiculously better but then I realized it was more than that. I asked my husband if I was awful to him (I love his total honesty) he said it was like I was PMSing and going through menopause at the same time! Luckily since giving up gluten I’ve got my really good sense of humor back. We laugh so much more now. Just like the good old days.
Like I said to complete the faces of celiac sentence-…more than a pain in the gut! So good to hear that you have good communication with your family.
EXACTLY. Unfortunately, the times I get glutened are chamelions – my reactions are rarely exactly alike. (I also have other problems, so sometimes they mask each other. – fun stuff.)
Kudo’s for them to be unafraid to call you on it! 🙂
Yup. Just googled gluten+rage+mania and found this link. I got glutened by a McCafe iced coffee yesterday. I took it back when I started sucking up little chunks . . .manager thinks they were oatmeal. She thinks they used the oatmeal spoon to stir or the oatmeal was too close or something. Anyway woke up early, went back to sleep, meditated, one hour later flew into a rage. Screamed at my kid, dumped my purse b/c I couldn’t find my keys, dumped the trash in the kitchen cause someone didn’t put a liner in the can. I don’t know how to get over it. I’m thinking of going home sick and putting the covers over my head for a few hours w/a cup of Laci La Beau’s and Bridemaids playing in the background. Any suggestions?
Some good advice here: http://glutendude.com/celiac/help-i-have-two-days-to-heal/
Happy healing to you.
I so feel you dude, I thought I was the only one this happened to, until I decided to google “I am an asshole after I consume gluten”. I do know gluten causes brain lesions, probably why I get 3 day headaches. I’ve been gluten intolerant going on 22 years, My auto immune disease goes farther than just grains, so I just stay away from processed foods all together otherwise I just turn into a monster, grains and dairy are my two biggest evils, as far as your thoughts about the head on collision I have had a similar thought, just kind of left it alone, my daughter and my nieces call me out on assholism every time, they know well enough when I’m getting out of line….Hey this was a good read and info, I totally get where you and a lot of people who commented on this are coming from, I can relate to a lot of this….Thanks
Well….sorry you were glutened…I am on day 7 of recovery and grateful to have found/ read your post. Misery loves company, but I was relieved to find out it’s not just me! I could hardly stand myself at work today but thought it was just the triple dose of pain and fatigue ( hit by a transport truck feeling )causing me to be so miserable. .. it helps reading your experience because KNOWING is 1/2 the battle…now I know. Thanks for sharing.
Sorry to hear you got glutened. I turn into a mess also but my son who is now 10 does exactly what you are saying everytime. Sometimes it is the only way we know there is an issue. He turns into someone else completely. He yells, cries for no reason and snaps very quickly over nothing. He gets so upset because he can’t control it, I feel for you both. Hope it passed quickly.
Thanks so much for writing this, I didn’t know what on earth was wrong with me until the last few days when I cut gluten and transformed back in to my real self, I had been having daily outbursts of anger and irritation, even smashed my phone to pieces in a rage, I kept saying I didn’t care if I died, every day I would feel so tired it was like I had been drugged, couldn’t focus on my work at all, and was falling behind with finances. I am in a new relationship and thankfully my bf has been so patient and understanding, most would have called me psycho and run for the hills. I have been a different person completely today, with it out of my system… calm and centred, I will never touch gluten again!
OMG Gluten Dude, this just happened to me! It never happened before, to my knowledge. But this time it was so obvious. It was the first time I’d trusted an eatery in months. The guy is like “everything’s gluten free” then later, “except the meatballs.” So I have a talk with him about CC. He seems legit enough and I’m starved, so I decide to risk it. Bad idea.
Next day, my husband wakes me… I’m a grouch when I wake up and I spent three minutes screaming about absolutely nothing. It’s like I”m outside myself going “stop it, stop yelling, OMG I can’t stop, OMG please don’t throw anything, OMG stop, please don’t raise a hand, OMG why can’t I stop?, please stop!” It was terrifying. He’s like “I’m sorry… I’m sorry… ” He didn’t deserve it of course.
I’m using the three strikes rule, if this happens again, I’m talking to my GP, if it happens a third time, psychiatrist.
I will not turn into a psycho for gluten. I’m scared shitless. This was about three days ago and I’m still terrified. Thank you for this article, at least I don’t feel alone in this.
I threw a shelf across the house and broke a broom handle over my head when i got glutened… oops.