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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Has Anyone Experienced One Or Some Of These Mental Health Issues?
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  1. 1. Which of these problems have you experienced?


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42 posts in this topic

I'm not too knowledgeable about all this, but I've read in a few places that the gut actually deals with a lot of the body's serotonin. If this is true, then could the damage caused by celiac disease also affect the body's serotonin levels/regulation? More importantly, is this intestinal serotonin the same kind that keeps the brain stable and happy?

So, for anyone who has been diagnosed with celiac disease or suspects having it: have you struggled with depression or anxiety in the past? Maybe obsessive-compulsive disorder or even an eating disorder? Or any aspies out there?

...I have an appointment with a gastroenterologist next week to figure out the source of severe gas cramping, and I was thinking that maybe I could pin down some chemical cause of my struggle with anorexia nervosa and obsessive behaviors, too.

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I have not personally struggled with these, but I can tell you that A LOT of people on here have struggled with anxiety and depression issues. I haven't had heard of anyone who was diagnosed OCDC, but I think many people may think we are because of how diligent we have to be when being gluten-free! Many think we go overboard trying to keep from having cc. It's very possible to develop an eating disorder as well because after awhile of eating gluten and being in pain we no longer want to eat and this can lead to not wanting to eat all. Just my thoughts...hope your GI appointment goes well!

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I've voted on behalf of my 8yo who has been diagnosed with autism, anxiety, adhd and ocd. Interesting!

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I've had anxiety, depression, and moderate schizophrenia.

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I've been dx'd with ADHD, depression, anxiety, and bipolar disorder. I was dx'd with ADHD at age 5. The rest came in my teens.

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-points at signature-

need i say more?

But! i've noticed that going gluten free has helped some of my... issues with it... not all, but some.

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Bipolar. My story is in my profile. :)

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I was getting pretty blue before I got on thyroid meds. If my docs would have pushed for Celiac testing (Hashis) maybe I would have known sooner.

Thyroid meds pulled me out of depression, but I was still reclusive.

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I have had all of them thrown at me at one time or another - they told me I was Bipolar for over 23 years.Came to find out I had Celiacs the roundabout way (quite a story really). I went to a wonderful Mayo clinic endocrinologist that diagnosed my Celiacs, I have horrible hypoglycemia and secondary adrenal failure. I never had much gut problem in the way of diareaha or hurling just neurological and behavioral. Later I found out I have Occipital Lobe epilepsy causing complex partial seizures (thus all the freaky stuff) and a enzyme disorder called Hyperhomocysteinemia where I cannot process Folic acid. Luckily I just recently found a wonderful Neuro-Psychiatrist and I think I cried when she told me I had never been Bipolar of Schizophrenic - and not crazy, just sick.

I do really, really well. Been gluten/grain/sugar free now for about 4 years. I take 300 mg Lamictal for seizure and now Deplin for Folate deficiency.

I honestly still harbor a pretty nasty grudge against a lot of modern psychiatry - and I wonder how many folks who are put through the psych wringer actually have Celiacs. Breaks my heart sometimes. I cannot tell you how I have been shamed and treated just monstrously, mostly by doctors who are completely ignorant of Celiacs. If you have a lot of psych/neuro issues you really have to stick to your guns, have courage, and shop around to find a really good doc.

Thanks for letting me share.

Peace!

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I was diagnosed with depression & bi polar about 15 years ago and have been on meds since. Recently I was able to go off of one med entirely by cutting back slowly and have cut the second med dose in half. The more I heal the better I feel emotionally. My current dr agrees that the gut issues and depression can be linked and is very supportive with my going off the meds. Slowly.

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The national research center for Celiacs in LaJolla, CA posted an article that 1 in 15 patients with mental disorders treated for 1 yr on gluten-free diet had all or most of the symptoms disappear. They do free testing as well.

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The national research center for Celiacs in LaJolla, CA posted an article that 1 in 15 patients with mental disorders treated for 1 yr on gluten-free diet had all or most of the symptoms disappear. They do free testing as well.

Could you please post the link to this? I would really like to pass it on to my psychiatrist friend.

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Anxiety is the biggest issue for me, I consciously know myself that I am not anxious. But the gluten makes my body go Wooohooooo and my stomach suddenly gets tighter.

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I had experienced traits of the following: Deepresion,ADD/ADHD,Aspergers,Parania,Anxienty,Bipolar and Social phobias....

Al the psychologist and psychiatrists ever seen me couldnt deside what kind of problem i had...theycould never give me a full diagnosis....witch of caurse its normal...i wish i could see them and talk to them about my gluten intolerance/sensitivity so they will accept that diet can effect the brain functioning and the behavior. I think the first thing they should ask anyone entering in their office is << Did you ever tested for food intolerances?>> Insted of giving pills to cure a non existed disorter....

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OCD here. Depression in the past, but I think that was more due to the birth control pills I was on at the time. Perfectionism? Well, that goes along with the OCD. Everything has to be balanced. Everything has to come out even. Asymetry drives me crazy. Now, if you'll pardon me, I have to go wash my hands again. :blink:

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depression, anxiety diagnosed. Aspergers strongly suspected by parents/self since childhood until removing food allergens and some other things in the diet. Looking back on it now, I'm almost positive I had slight aspergers. Also anger problems, suicidal tendencies, paranoia and auditory/visual distortions. Mother is also intolerant to gluten and other foods and I have seen her on and off of the diet (90% of the time she is off of it). She has diagnosed depression, ADHD, OCD, and she very easily could get diagnosed for bipolar if she were to bring it up to a psychiatrist. Important to note that when she stays away from dairy and gluten she is a completely different calm and focused person.

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I haven't had a healthy relationship with food since I was about 12 or 13. I just try to be aware of that and make healthy choices or change things in the house that will help me. I did struggle with depression a few years ago, but since it was following a miscarriage I'm sure it has nothing to do with anything else. I've dealt with OCD since forever. I showed symptoms from the time I was a toddler, but it doesn't have any serious negative impact on my life.

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I'm not too knowledgeable about all this, but I've read in a few places that the gut actually deals with a lot of the body's serotonin. If this is true, then could the damage caused by celiac disease also affect the body's serotonin levels/regulation? More importantly, is this intestinal serotonin the same kind that keeps the brain stable and happy?

In answer to your questions about seratonin? YES! And all the other neurotransmitters and amino acids that are made in the gut that regulate mood.

Also, vitamin and mineral deficiencies that result from malabsorption will affect you neurologically as well.

I had anxiety and depression develop so intensely in me when I was very ill from celiac that I thought I was losing my freakin mind. I had had some depression post- multiple miscarriages many years before, but it had resolved in time. So, it was a nightmare to have all that start up again. I had to stop driving because my brain was so fogged from gluten, my reflexes were shot. I was dizzy and out of it. It caused me to become quiet and fearful. NOT at all my personality.

I had one conversation with a psych doc (upon recommendation by my PCP who gave me xanax but it just made me sick) and I told her, I am NOT an anxious person by nature --something is CAUSING this in me. Please believe me. I feel sick all the time and I am losing weight, blah blah blah.

She asked me if I had any food intolerances (I had no clue back then) and I started researching and I figured it out eventually. I had full blown celiac all along.

I called her recently and told her that celiac causes anxiety and depression and a variety of mental health issues and she thanked me for telling her, citing perhaps some of her anorexia patients were actually gluten intolerant. I said: I think it is worth investigating! I certainly did not mean to lose 90 lbs. like I did and become so skeletal.

Off gluten, all that weirdness disappears. Accidentally glutened? Comes right back with a vengeance. <_<

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Have you read the Gut and Pyschology Syndrome book? Over the past year our family has been doing the diet, which is aimed at restoring the gut flora to a healthy balance, getting nutrient dense food, and reducing inflammation & further damage.

As for my mental "health:"

Bipolar including major depressive and manic episodes with suicidal ideation, delusions, and hallucinations. It was worst when I was in my late teens/early twenties. With counseling, reduction in life stress, and reduction in some other food triggers, I was able to live with it and get to the point where I only had hypomanic and depressive episodes with very occasional delusions and hallucinations which I could experience but usually realize (at least in retrospect) were not reality. I have some OCD tendencies and tendencies to get stuck thoughts. Anxiety. ADD as well. Sensory integration issues.

My son had ADHD, anxiety, and extreme dyslexia which all resolved gluten-free & on GAPS and come back when he gets glutened. My daughter, while not celiac, has seen improvement in ADD off gluten.

My symptoms got much better off gluten. They were not 100% better and I did start stuttering which I hadn't done before. Maybe some sort of withdrawal?

When I did my gluten challenge after a year gluten free and 9 months on GAPS, I could handle the physical symptoms (not fun), but within two months my mental health went so far downhill that I had to quit. People here even noticed my moods and brain function had reverted to a moody adolescent state, taking everything personally and defensively.

What you couldn't see was that when I got upset I looked like the Tourette's Karaoke guy when he has an autism flare up. My brain gets stuck on things like "needing to line everything up," I can't communicate, I lose control of my body, I repeat one word (or part of a word) over and over... My sensory issues flared up, and I felt depression coming on as well.

I've been off gluten for 3 days now and already my mind is starting to clear up! It's not completely better, and maybe never will be, but it's clear to me there is a link.

As others mentioned, the research is starting to back us up on this one!

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I was just diagnosed with Celiac Disease and I have been gluten-free for one week! I can never remember not being depressed and not fantasising about suicide (including a few attempts). I've been medicated since my early teens. I have severe anxiety and have to take additional medications before going anywhere other than work or the grocery store (which is an improvement!) I was diagnosed Bipolar in 2010, and with ADHD in 2011. I've also always had OCD symptoms (and I've become a clean freak over the past year or so!), paranoia, and severe insomnia. I might also add that Celiacs does not run in my family, but mental health issues do (some of my past family that I never knew were actually hospitalised most of their lives, and some have committed suicide). This is all so interesting...

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Thank you for this post. I have mild ADHD and OCD as well as amenorrhea and a few digestive issues. I didn't know that the OCD could be linked to the intolerance as well.

Anyone know how long it takes exactly for the neurological symptoms to subside?

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It's so weird to think all of my problems are linked..well most are, anyways.

I was diagnosed with celiac yesterday. As far as I can remember I've had terrible mouth ulcers. I've been diagnosed with Ankylosing spondylitis arthritis, Anxiety disorder, aspergers, ADHD, and now celiac.

I'm also being tested for diabetes and Crohn's.

I was wondering if-at all- how long it will take on a gluten free diet for me to experience less OCD and such? And can anyone provide me with information on how this is connected? On how gluten effects people with celiac in more ways than bowel issues, how it increases anxiety?

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My symptoms are *dominantly* neuro/psychiatric. I have to have been on gluten for a while before I start noticing dramatic physical symptoms - otherwise, my physical symptoms tend to be the "nagging minor complaint" variety that tends to make other people think I'm a malingerer.

I was in a psych day program for three weeks when I broke out with a bad, full blown case of DH and finally it started to look like... "oh, this isn't all in my head".

My neuro/psych symptoms are the following:

* A form of dissociation. Feeling spacey or disconnected from my body.

* Feeling emotionless or numb.

* Not being able to string two coherent thoughts together.

* Bad ADHD symptoms.

* Sensory issues

* Feeling like my brain has been wrapped up in a blanket

* feeling confused and like I don't know who I am

* being able to basically sit there in a corner and stare at a wall and drool

* NO energy.

* bad coordination

* seeming like I'm drunk or on drugs

* zero libido. I didn't even figure out what my sexual orientation was for a long time because I was so "delayed" in this department. No feeling of connection to my body

I was dx'd with Asperger's, but then the diagnosis was reversed by a different professional who saw me after I'd been on Atkins for a while. The funny thing is that on Atkins, I felt completely normal.

I dropped out of high school at 15, have often had severe learning issues (sporadically - would do very well sometimes but inexplicably, badly at other times), I had trouble learning to drive and had frequent car accidents, and at 38, it's only now I'm getting control of my life (am a full time college student now, doing well) after a lifetime of failed classes and lost jobs.

When my diet is under control - I feel like a HUMAN BEING and nobody can ever believe that I've been through what I have.

The psych symptoms for me happened long before physical symptoms set in. I had suffered with those most of my life, but only had DH in 07. I now also have Graves Disease and severe periodontitis with bone loss.

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Hi there. I am bi polar, major depression, ocd, add, anxiety disorder and social phobias. Aslo have many physical and neurological things going on. For most of my life I've had ibs type stuff, reflux stuff, you know, the nasty stuff. When I went gluten free, all of my digestion issues resolved. As of yet, all the others are still with me. I do, however, have plenty of hope that I will keep resolving at least some of the other issues. There are so many disorders that can be effected by celiac. I think it's just a wait and see. In the meantime, I am thrilled about the relief I have received and it makes the other stuff easier to tolerate. Any improvement to ones health is one to be celebrated.

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I have had all of them thrown at me at one time or another - they told me I was Bipolar for over 23 years.Came to find out I had Celiacs the roundabout way (quite a story really). I went to a wonderful Mayo clinic endocrinologist that diagnosed my Celiacs, I have horrible hypoglycemia and secondary adrenal failure. I never had much gut problem in the way of diareaha or hurling just neurological and behavioral. Later I found out I have Occipital Lobe epilepsy causing complex partial seizures (thus all the freaky stuff) and a enzyme disorder called Hyperhomocysteinemia where I cannot process Folic acid. Luckily I just recently found a wonderful Neuro-Psychiatrist and I think I cried when she told me I had never been Bipolar of Schizophrenic - and not crazy, just sick.

I do really, really well. Been gluten/grain/sugar free now for about 4 years. I take 300 mg Lamictal for seizure and now Deplin for Folate deficiency.

I honestly still harbor a pretty nasty grudge against a lot of modern psychiatry - and I wonder how many folks who are put through the psych wringer actually have Celiacs. Breaks my heart sometimes. I cannot tell you how I have been shamed and treated just monstrously, mostly by doctors who are completely ignorant of Celiacs. If you have a lot of psych/neuro issues you really have to stick to your guns, have courage, and shop around to find a really good doc.

Thanks for letting me share.

Peace!

ElitaSue,

The mention of your epilepsy piqued my interest. My oldest daughter also has Complex Partial Seizures, however they found that her focal points are from the frontal lobe. (Originally they weren't sure where the focal points were since her entire brain was showing 'severe seizure activity' on the EEGs). She was diagnosed when she was 5 years old. Her seizures were mainly nocturnal, or when she was sleep deprived, but her 24 hr. EEGs showed she was having seizure activity up to 7 seconds long while awake throughout the day, but not showing obvious outward signs. At the same time she was also diagnosed on the autistic spectrum (PDD-NOS), OCD (obsessive compulsive disorder), ADHD, and ODD (oppositional defiant disorder). Interestingly, when her seizures were finally controlled, a lot of her other behaviors improved or went away (probably since the frontal lobe has a lot to do with behaviors). She has not had a seizure in years and she is no longer medicated. She still suffers from pretty high anxiety, some OCD (especially germs), and is a bit socially awkward. Oh, and she is always VERY gassy (the child farts everywhere, all the time, and does not care who is around)! We have even tried giving her Beano, but it does not help.

I have never had any idea where her seizure activity came from, we have no family history, etc. and MRIs showed nothing wrong. We do, however, have family history of bowel issues. My mother has ulcerative colitis and hypothyroidism. We have a family history of severe and chronic canker sores (I personally have 'ulcerated to the bone' on my gums) going back MANY generations. My son was just tested through partial bloodwork for Celiac due to vomiting and constipation, but since we found he has allergies to wheat and other foods we have just gone gluten-free with him. My doctor just sent my bloodwork off to test for Celiac, anemia, hypothyroidism, etc. All of my children (and myself) suffer from eczema, but my daughter also gets other skin issues. She currently has pityriasis rosea that she has had for a year now (although we are down to just one patch left). I could go on and on.

So my questions for you...Do you think the epilepsy could have been caused by gluten/Celiac? Should I insist on her being tested? Is your epilepsy currently controlled? Did the diet help? I want my daughter to try the gluten-free diet, but she is the most resistant to it. She is currently 15 and can be very difficult! I want to find ways to convince her to give it a try, but if it is not 'her idea', she would go out of her way to NOT eat gluten-free. :(

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    • need advice
      Welcome!  The only way to find out if you have celiac disease is to get tested.  Here are the tests that your GP can order for you: http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ THIS IS IMPORTANT!  YOU MUST BE CONSUMING GLUTEN DAILY FOR THE BLOOD TESTS TO BE ACCURATE.  THIS ALSO INCLUDES THE ENDOSCOPY (BIOPSIES) WHICH ARE DONE BY A GI.   Anxiety can be a symptom for celiac disease.  Please do some more research so that you can get a proper diagnosis.  Can you go gluten free?  Sure.  That's what my hubby did 15 years ago per the very poor advice of my allergist and his GP.   Twelve years later, I was diagnosed.  Weird, huh?  Anyway, hubby will tell you that I get way more support.  He get's a lot of eye rolling.  Plus, our kid (and my folks and siblings) get screened every few years because I have a diagnosis.  My kid gets tested every couple of years even without symptoms because you can be symptom free and still have celiac disease.  celiac disease is genetic.   It is an autoimmune disorder triggered by gluten.  It is the only autoimmune disorder that is triggered by something known.  If you have RA, MS or Lupus, for example, doctors do not know what actually triggers these other autoimmune disorders.   So, Keep researching.  
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    • need advice
      I'll keep this as short as possible, sigh. I remember having constipation all the time till i was 10 or 11 then i started getting diarrhea all the time. Ive never been able to pin my diarrhea to a certain type of food it always has been at random. Or it seemed that way. Sometimes ill have normal BMs for a couple weeks then diarrhea for a week or normal for a day or two diarrhea for a day or 2. I started getting tingly numb hands this year, i get sick all the time, i had one rash on my stomach i couldnt get rid of for years the doc said was dermatitis. So many more symptoms that line up with celiac. Heres the beef though- 7 months ago i had my first panic attack ever. I thought it was triggered by giving up chewing tobacco and the withdrawals coupled with stress at work and being a new dad but after reading about the connection between gluten im not so sure. The past 7 or 8 months have been hell. Constant anxiety, i dont get as kany panic attacks as i did in the beginning but now im suffering from depression. So, i started gluten free 2 days ago. The second day i started having horrible anxiety and a panic attack like my first one. Extremely intense.  Is that a sign that maybe i do have celiac or intolerance that coming off would make symptoms worse? I want to get tested but ive been to the ER 3 times and seen so many docs, psychiatrists and therapists trying to figure out a cause, i cant afford anymore. I dont think i can just one day bam! Have all this anxiety without a cause. Can i just do my best to stay gluten free and see what happens or is it very important to be tested? Also, will any gastro be able to test me? If i go to a gastro should i even bring up the anxiety and depression? Everytime i do i get a response similar to " its all in your head " and they just want to throw pills at me. I'm so lost to how my life got so messed up in 7 months. I need this to be the answer.
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