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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten & mental/emotional effects
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10 posts in this topic

I recently glutened myself and I always forget just how awful it feels but I've never seen anyone else have the same symptoms. Mine are mental/emotional. It feels chaotic, like there is static in my head, and I feel just very negative about myself or bad about myself. Hard to concentrate, and really low self-esteem. Like there is a trap door in my head I'm constantly falling down and I just am not on solid ground.

I have no stomach issues & it's not exactly anxiety or depression. I guess even though I know exactly what it does to me, I want it to be validated, like someone else knows this feeling. Or even if you don't, please share any non-traditional symptoms you have experienced. I can't believe I lived most of my life this way (just got gluten free 6 months ago).

It's crazy. :(

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Hello and welcome :)

Hmm, where to start?  The good news is you've found a great site with people who can truly empathise. So be welcome and draw as much support and info as you can from here, I know I did. 

You're in no way alone, others, myself included can vouch for that. I know all about that jumbled up feeling of a head full of cotton wool and I spent many years on various anti depressants which never did much to pierce the aching hollow feeling.

Feeling that bad you would think that finding the reason and stopping it would feel wonderful, and it did, but then comes the realisation that all that misery was unneccesary, all those years wasted. That's can be as tough a burden to bear as the gluten itself. I sought counselling and it helped, that may be helpful for you too?  

I wrote about this (warning at some interminable length) here  and hopefully it will be of some help, especially if you have trouble sleeping :D

Finally, don't beat yourself up about glutening yourself. It happens to everyone even the certified Gluten Free Jedi Masters themselves :D It's inevitable at some point however careful you are and 6 months in is probably par for the course. It's hard when you're in the midst of it but I find it helpful to remember, it's not all in your mind, it's physical, it's unpleasant but you have withstood worse before and will again and most importantly, it will pass and you'll get back on the road to recovery. 

Best wishes and good luck :)

Matt

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You are definately not alone. I spend a good 24 hours suicidal after a glutening. Thankfully it lifts within a day but the foggy and forgetful confusion lasts a bit longer. I was hoping this effect would lessen after a few years gluten free but it hasn't. I do take comfort in the fact that I know now what causes it and that it will lift and just try to not be too self critical until it does.

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Brain fog, can't remember sh!$, and anger is what happens to me mentally. I have a hair trigger when I get glutened.

 

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Hi Palmtrees and big ((((hugs))))!

Although my digestive symptoms come first, I think the mental and emotional symptoms are worse after a glutening.  The brain fog is absolutely horrendous and the feeling like I'm stuck in some mental pit, that I will never come out of, is the worst.  It's a dark and lonely place, truth be told.  Thankfully, it does get better.  Hoping you feel better really soon.  😄

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On 4/17/2017 at 10:44 AM, Jmg said:

Hello and welcome :)

Hmm, where to start?  The good news is you've found a great site with people who can truly empathise. So be welcome and draw as much support and info as you can from here, I know I did. 

You're in no way alone, others, myself included can vouch for that. I know all about that jumbled up feeling of a head full of cotton wool and I spent many years on various anti depressants which never did much to pierce the aching hollow feeling.

Feeling that bad you would think that finding the reason and stopping it would feel wonderful, and it did, but then comes the realisation that all that misery was unneccesary, all those years wasted. That's can be as tough a burden to bear as the gluten itself. I sought counselling and it helped, that may be helpful for you too?  

I wrote about this (warning at some interminable length) here  and hopefully it will be of some help, especially if you have trouble sleeping :D

Finally, don't beat yourself up about glutening yourself. It happens to everyone even the certified Gluten Free Jedi Masters themselves :D It's inevitable at some point however careful you are and 6 months in is probably par for the course. It's hard when you're in the midst of it but I find it helpful to remember, it's not all in your mind, it's physical, it's unpleasant but you have withstood worse before and will again and most importantly, it will pass and you'll get back on the road to recovery. 

Best wishes and good luck :)

Matt

Hi Matt,

Unfortunately I can completely relate to you. Please don't say as you did in your linked post that given what is going on in the world that to write about your problems is self-indulgent. Since I've been through similar to what you have, I can tell you that a ruined life is no joke, and that what you went through though intangible is real and matters. And is even harder for being intangible.

I have no idea how to explain to anyone who doesn't have this problem that I feel like my life was ruined by gluten. It's ridiculous.

I am 36 and also feel like basically I am just waking up in the middle of my life to find that I royally screwed it up and am starting from scratch, here for the first time. I did not have a happy childhood and basically got the double whammy of life with that and the gluten intolerance messing with my brain chemistry, I went waaayy off track in life. I've been through it all.

It's not fair. But I'm here now. It's not too late for you. Watch the Tony Robbins documentary on netflix, check out the law of attraction, start in on the self help stuff. If you made it this far, the rest should be so much easier.

It's not really easy though. There's so much to deal with and still so much work to be done. But it's worth it. Are you going to just give up and resign yourself after you've already been through the hardest part? 

Feel free to pm me (assuming that's possible on this forum) if you want to talk.

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Hey Palmtrees450,

You are not alone.  I am going through the exact same thing right now.  I thought it was gone but unfortunately I ate something else that has triggered it again.  After reading another article on here I am starting to think it is rice...yet one more thing to eliminate from my diet, have already given up dairy and corn, now rice.  I have super high anxiety.  Doesn't matter who it is or what is said I am over emotional and really struggle in day to day functions even down to just folding a basket of laundry.  I do have Xanax but that doesn't even help anymore.  I have actually stopped taking it because of that.  Only thing that helps is time, rest and drink plenty of water.  The rest helps me more because then I get to be still and not think about anything.  Hard to function when you have what feels like 15 people in your head at one time talking to you but it is only your thoughts rushing through your mind.  

I truly hope you feel better soon.  Just be cautious out there.  Even down to making sure your kitchen is clean and that all of your utensils, plates, pans, etc. are washed extremely well as sometimes I feel like this is where some of my problem comes in at but I haven't figured all of that out yet.

 

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I can completely relate! The horrible mental effects that I have been living with for years is the absolute worst side effect of eating gluten, HANDS DOWN. Worse than the endless tummy aches, worse than the constant diarrhea, worse than the week long migraines, worse than the daily fatigue and body pain....

I honestly though there was something seriously wrong with me and hated my life because of how I felt mentally. I always felt like I was drowning, not in control of my thoughts, trapped in some unexplained misery. My head was always so cloudy, and I was mad because I always felt so slow and stupid. I would feel so lethargic and sad and empty while at the same time be raging inside, wanting to rip out of my own skin. I was mean, terrible, would snap at the people closest to me for no good reason and just felt like I hated everyone and everything. Think of how crappy you feel when you have a terrible cold and flu - I felt that crappy, but mentally. Some days were really bad, some were mild. I always thought it was because I was getting a migraine, or because I had a migraine, or because I had just overcome a migraine, because I didn't sleep well, because....always a random reason to justify why we have all these weird unrelated symptoms before we get diagnosed.

I'm happy to say that I have been gluten-free for about 2 months now and though I am not symptom free, the first thing that improved was my mood. I no longer feel foggy and miserable. For the first time in years, my head is clear, I can actually think, and I feel positive and like I am in control of what's going on in my head. I don't hate the world. I don't spend every day bawled up on the corner of the couch depressed and angry.

The release of these horrible symptoms is enough to never make me want to cheat, no matter what I have to miss out on.

So insane how a little minuscule amount of a stupid protein can wreck such havoc. 

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On 4/24/2017 at 5:44 PM, melprkr said:

Hey Palmtrees450,

You are not alone.  I am going through the exact same thing right now.  I thought it was gone but unfortunately I ate something else that has triggered it again.  After reading another article on here I am starting to think it is rice...yet one more thing to eliminate from my diet, have already given up dairy and corn, now rice.  I have super high anxiety.  Doesn't matter who it is or what is said I am over emotional and really struggle in day to day functions even down to just folding a basket of laundry.  I do have Xanax but that doesn't even help anymore.  I have actually stopped taking it because of that.  Only thing that helps is time, rest and drink plenty of water.  The rest helps me more because then I get to be still and not think about anything.  Hard to function when you have what feels like 15 people in your head at one time talking to you but it is only your thoughts rushing through your mind.  

I truly hope you feel better soon.  Just be cautious out there.  Even down to making sure your kitchen is clean and that all of your utensils, plates, pans, etc. are washed extremely well as sometimes I feel like this is where some of my problem comes in at but I haven't figured all of that out yet.

 

Might want to look into a keto diet, I have UC on top of celiacs and keto is working great

On 4/17/2017 at 8:59 AM, palmtrees450 said:

I recently glutened myself and I always forget just how awful it feels but I've never seen anyone else have the same symptoms. Mine are mental/emotional. It feels chaotic, like there is static in my head, and I feel just very negative about myself or bad about myself. Hard to concentrate, and really low self-esteem. Like there is a trap door in my head I'm constantly falling down and I just am not on solid ground.

I have no stomach issues & it's not exactly anxiety or depression. I guess even though I know exactly what it does to me, I want it to be validated, like someone else knows this feeling. Or even if you don't, please share any non-traditional symptoms you have experienced. I can't believe I lived most of my life this way (just got gluten free 6 months ago).

It's crazy. :(

Yeah I have major nerve and brain issues with gluten, gluten ataxia with nerve issues and brain issues. Seems to cause my body to attack my brain and nerve system. My brain stumbles fogs, and starts looping, the confusion causes me to become really irritable, I call it going Mr Hyde. Like my mind will start looping constantly on thoughts and not move driving me literally mad, or it used to. Now days it is primary the numbness anger but the gut issues and sometimes random motor loss limit me motionless to the floor now days for the duration of the major anger effects. Used to be a lot more mental then painful gut. I did a mental trauma post on it on while back where I came out about all my mental issues with gluten.

 

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There is no doubt that gluten exposure can cause psychological and neurological symptoms. Gluten causes a 'whole body' inflammatory response. Some of us have mood changes, brain fog, mental agility  issues after ingesting gluten, while others have more gastric symptoms. I too, know I've ingested gluten when my mood tanks, anxiety and negativity set in, and I anger quickly. I also feel 'twirly,' not really dizzy, but weird and then I get brain fog. After  1-2 days of this, gastric signs like burning stomach and gas appear. So yes, your nervous system can respond! Below are some  links to articles and to peer reviewed research on the topic.

Is Gluten Making You Depressed? | Psychology Todayhttps://www.psychologytoday.com/blog/the.../is-gluten-making-you-depressed

May 24, 2011 - Celiac disease, commonly thought of as only a GI disorder, can ... and use of neurotransmitters-brain chemicals that help modulate mood.

It's Not Just In Your Head - National Foundation for Celiac Awareness

Brain fog. Memory lapse. Headaches in up to 50% of people with celiac ... Coeliac disease and risk of mood disorders - a general population-based cohort ...

Anxiety but not depression decreases in coeliac patients after one-year gluten-free diet: a longitudinal study

G Addolorato - Scandinavian journal of gastroenterology, 2001 - Taylor & Francis
 

Extraintestinal manifestations of celiac disease

L Hernandez, PH Green - Current gastroenterology reports, 2006 - Springer
... Depression Common symptoms described in celiac disease include exces- sive anxiety, fatigue,
and irritability, which are also found in depression, a common disorder in celiac disease patients
[26,27]. In younger people these depressive symptoms may decrease after ...
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