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29 Comments

  1. 1

    Rose

    Heartbreaking. :(

    Reply
  2. 2

    Daisy

    What an Eye opener – Doctors around the Globe should read this story. thanks a lot for sharing this important wisdom with us.

    Reply
  3. 3

    Julie

    I have a lot to say about this but can’t find the right words at the moment. Thank you for sharing this story though. It is heartbreaking as a patient to have had celiac affect you in this way before you were finally diagnosed. Damaged relationships; hurting the one you love more than you can express. Finally getting a diagnosis in time for them to be gone and unable to get them to see that what was truly killing me could cause all that it did. Grateful to be on a healing journey but wish I could take back all the moments gluten made me Hulk like within a short time of eating. Of the 35+ symptoms I suffered with that was the worst in many ways. I know it’s in my past but the healing and forgiveness I had to move through – just not finding the words.

    Reply
  4. 4

    Daniela

    I have been through this hell….I know where ‘that place’ is….my life and future shattered by people around me who tok advantage of my weakness…doctors still amused when I tell them I have had to elongate all grains..Medical community completely useless and arrogant…but the thing that still hurts the most is the complete lack of empathy for what I was going through…and my knowing I was never going to be able to explain it to them…😔

    Reply
    1. 4.1

      Luna

      I’ve also had to eliminate all grains. They just don’t work for me. I’m sorry for what you went through. It’s hard, I know. All too well.

      Reply
      1. 4.1.1

        Daniela

        Thank you for your words, it means so much to be understood…there was a time I really thought I was going mad….stressors that I would have so easily managed in a different moment became overwhelming and, as I said, unfortunately life altering. Looking back today I realize that my symptoms where already there as a young child…stomach ache…mouth ulcers…bloated stomach I now look at in photographs and realize…dermatitis herpetiformis all over my scalp, forehead, arms ….hair falling out…bloated always, chronically constipated….(initially alternating with diarreah where I would literally collapse I was so dehydrated)- diagnosed at 27 – after 10 years from first manifest symptoms – only at my insistence with a local endocrinologist because I was so exhausted (had seen very expensive top specialists who had told my parents and myself that thyroid was working even though in the low limits, that I was making it all up even though I couldn’t hold my arms up)….this endocrinologist tests my thyroid, said I needed eutirox (Italian equivalent of synthroid I imagine- synthetic t4) which of course I didn’t absorb and therefore transform into t3 bejng there no oroper enzyme production and from there sent me to Rome where I was finally diagnosed. But thy kept me on thyroid hormone…never questioning if after diet change I would still need it if I started to absorb proper nutrients to make it work….nobody made this connection. Then gluten free diet….major sickness…even water would make me react…two years on allergy tests…practically couldn’t eat anything…starting reintroducing foods very gradually…..then stressors made me react very badly…people sensed my new weaknesss…I had never been like this…I was looking for help…instead I was attacked….years of depression followed, panic attacks, OCD, putting on eight like a balloon..acne all iver my face had becwr had this…diagnosed pcos…put on the pill.!!lost my period was literally a balloon….argues with gynecologist…..i thee it away…finally about two years ago (by chance) diagnosed with hashimotos (never absorbed thyroid hormone, had to insist it wasn’t doing anything and that I didn’t want to take it – literally fighting with new endocrinologist who didn’t want to risk taking me off the hormone which I had uselessly taken for almost 14 years!!!) in the end lab test proved me right- without the hormone, labs were exactly the same …she couldn’t even look at me in the face…furthermore she discovered (at least this I must give her credit for because I didn’t even know what they were nobody had tested me for them before)–my anti TPO antibodies against thyroid were present…also told me there was no cure to lower antibodies which I argued was impossible remembering my history with gluten antibodies… A year later I went back with no antibodies…Just changing my diet…no grains, selenium , whole foods basically AIPaleo….which I learned from the online community…sorry for this being so long but now I feel I need to give back to this incredible community that helped me so much…..
        The depression has been unspeakable…there are really now words. Thank you again!

        Reply
        1. 4.1.1.1

          Luna

          *hugs* You’ve had a worse go of it than I have, and it’s not been easy here (see below!) If you want to talk, you can click the link below to my Twitter, DM me, and I’ll give you an email address. If not, that’s all good too. :)

          Reply
          1. 4.1.1.1.1

            Daniela

            Luna, would love to….forgive me though as i am new…I can’t find which link you mean to your Twitter 😳😳

            Reply
        2. 4.1.1.2

          wheatfreeeee

          Yes! There is so much I relate to here!

          Reply
      2. 4.1.2

        Daniela

        Forgot to add….bipolar brother….

        Reply
  5. 5

    Paula-momof8

    That is so scary!. Knowing what I know about this disease and how it affects the brain I think gluten is bad for everyone.. I know that sounds extreme but it is dangerous.. I have seen it in my own family. Our daughter was having seizures until she went gluten free. She has adhd . She became a different kid once we went gluten free .. She is much more focused and calm now . When exposed to gluten, not only do I have all the usual stomach issues but I also get depressed, have episodes of crying, irritability, moodiness ,I get edgy and often feel like I am about to jump out of my skin and everything and everyone seems to get on my nerves. I get insomnia, migraines, and extreme brain fog etc. I have an aunt that has been diagnosed with schizophrenia and paranoid delusions. I have cousins that are bi-polar and have adhd, and ocd all of which can be caused by gluten or at the very least the symptoms are less extreme on a gluten and dairy free diet. I am convinced gluten is poison for everyone.

    Reply
  6. 6

    Kst

    Thanks for sharing this I think more psychiatrist and psychologist nu ect should become aware of this so they can test patients who don’t respond to treatment

    Reply
  7. 7

    Anon

    Growing up, I assumed my father was bi-polar. He could turn on a dime, saying or doing something unforgivable and then a few hours later act like nothing had happened. He went from being so anti-gun as to. not allow me to have a toy gun when I was a kid to owning many semi automatics. He had no problem threatening to kill people. After my mom died, I cut him out of my life completely and spent the next 20 years fearing he would try to find and shoot me.

    I was diagnosed in my 40s, after finding out that two of my uncles are celiac. I now am certain that my father was also, but he ended up dying at 69 after having been diagnosed with Dementia at 54.

    My sister killed herself at 19 and I’ve noticed that I have suicidal thoughts whenever I’m accidentally glutened. It’s some scary stuff.

    Reply
    1. 7.1

      Laura

      Wow, I’m so sorry you and you family have had to go through all that :( I can’t imagine how if felt. For what it’s worth, at least you know now, and can pass the knowledge down to your children (if you do/will have them) to prevent anything like that happening again.

      Reply
      1. 7.1.1

        Anon

        Thanks, Laura. I decided long ago that no kids was a better route for me. They don’t need to be subjected to my family’s level of crazy.

        Reply
  8. 8

    Luna

    This doesn’t surprise me. At all. My own experiences with gluten are not as dramatic as this, but I can see how they could have gotten that way. On gluten, I rage. I rage at all the little shit that happens. I blew a gasket in the bank because I was furious at how they were treating my recently widowed mother (and by ‘blew a gasket’, I mean I started screaming, swearing, demanding a manager, threatening people…) I threatened to drive off a cliff because my husband was rude to me while I was driving. I threw a pot of spaghetti (still boiling) at the wall because I’d overcooked it. I interrupted the head of security at the university, while he was in a meeting with the president of the university, to scream at him about my parking pass problem. I could go on. For days. This is why I won’t risk restaurant food. It’s more than being sick for a while. It’s being scary for a while. Now that we know it’s gluten, it’s all good. No rage incidents in many years.

    And you know what? All that? My daughter is worse on gluten. She’s autistic, and when she’s glutened, omg. I almost called the police a couple of times. I was seriously considering having her put into a mental health ward until I figured out it was gluten again! She’d been cheating because a very stupid doctor told her that it wasn’t celiac because her ttg was normal – she was already gluten-free for years – and she decided Mom was just being mean not letting her eat bread. *sigh*

    Reply
  9. 9

    anon

    For me the neurological symptoms (including panic attacks and suicidal depression) along with brain fog, insomnia, word finding difficulties, trouble with fine motor control, extreme irritability, clumsiness, etc are so much worse than my GI symptoms. At least I can take imodium for my GI symptoms, there is nothing I can do for my neurological symptoms. I just have to wait out the hell that it causes and hope that my irritability that it causes doesn’t cause me any problems. When I was talking to my GI doc at my last appointment he said that I was on the extremely sensitive side of sensitivity. It sucks. Before diagnosis I spent 13 years severely and chronically depressed and none of the many medications I tried did anything to help it. I was suicidal on a daily basis for all that time. I am surprised sometimes that I made it.

    Reply
  10. 10

    Deb

    Reading this took me back to just about 2 years before I was diagnosed. I also became delusional. Thought people were plotting against me at work. But then, it turned out they were and I was fired. But people could not be around me because I was totally irrational. I was fired. I could not control what my brain was thinking. Rage. Confusion. Weight gain. Weight loss. Severe pain in my entire body. Forgot how to add and subtract. Could not remember my own address or phone number. Then forgot simple words. Couldn’t speak in an understandable sentence and I had doctors laughing at me because I made no sense. Wanted to die. So much damage to my body. My mother described me as a colicky, fussy baby who refused to eat and cried all the time. I had stomach issues as far back as I can remember, but had no clue that what I was going through was not normal because for me, it was. Sick 47 years of my life. Who could I have been had this disease not ravaged my entire body? This disease is not a joke. And I am not one bit surprised at what this poor woman went through and is now still going through because of a disease that is not taken seriously by most doctors much less the general public.

    Reply
    1. 10.1

      A

      I totally believe you. I’ve lived something similar.

      Reply
  11. 11

    Peggy

    I was born with Celiac disease. I was not diagnosed until I was 47 years old. I have both varieties of this horrible disease and have it to the degree that I have my own special diet and my body is convinced that other foods besides wheat are gluten. I have given up 75% of the foods that I ate. This happens when you go undiagnosed for years. Also hand in hand with this disease IS mental illness. Yes, most of us don’t want to admit that we are so greatly effected by this part of our disease but it is unavoidable. I don’t have a mental illness diagnosis but I know when I got contaminated. It is always unintentional and always results in me not being able to read people, their expressions, tone of voice or mannerisms are different – it’s not them tho. I believe everyone is mad at me and that I can’t do anything correct at all. This is the last symptom and is in the tale end of a 10 day horror story. The more people discover and treat ALL of the aspects of this disease the faster they will heal. Oh, one more piece of the puzzle….I see a naturopath doctor. I won’t go to anyone else. She has turned my health around and saved my life twice. Peace.

    Reply
  12. 12

    Peggy

    I was born with Celiac disease. I was not diagnosed until I was 47 years old. I have both varieties of this horrible disease and have it to the degree that I have my own special diet and my body is convinced that other foods besides wheat are gluten. I have given up 75% of the foods that I ate. This happens when you go undiagnosed for years. Also hand in hand with this disease IS mental illness. Yes, most of us don’t want to admit that we are so greatly effected by this part of our disease but it is unavoidable. I don’t have a mental illness diagnosis but I know when I get contaminated. It is always unintentional and always results in me not being able to read people, their expressions, tone of voice or mannerisms are different – it’s not them tho. I believe everyone is mad at me and that I can’t do anything correct at all. This is the last symptom and is in the tale end of a 10 day horror story. The more people discover and treat ALL of the aspects of this disease the faster they will heal. Oh, one more piece of the puzzle….I see a naturopath doctor. I won’t go to anyone else. She has turned my health around and saved my life twice. Peace.

    Reply
  13. 13

    Denise S

    Kudos to you for bringing light to this story!

    Reply
  14. 14

    wheatfreeeee

    Thank you SO MUCH for having the compassion to discuss this!

    The psychiatric effects of celiac are so disturbing and terrifying, that not many (well) people are keen to acknowledge it. And let’s face it, psychiatric health care very often overlooks (treatable) physical causes of mental changes.

    I have my own celiac psychosis horror story. I lived it first hand, and it was harrowing.

    Gluten exposure can directly cause psychiatric effects, but then there are also the complications of celiac disease as well. Deficiencies in iodine, b12, iron, etc, and conditions like thyroid autoimmunity can also drastically affect mental state.

    I’ve lived all of this. It’s a very long story and might doxx me, so I’m not sure if I should share, but I would if helpful.

    Reply
    1. 14.1

      Gluten Dude

      Please feel free to share. If you’d rather contact me privately that works for me as well. Your call.

      Reply
      1. 14.1.1

        wheatfreeeee

        Thanks Dude! I might send an email, but it will take me a while to compose it. There are others with similar stories I see too:(…

        Reply
  15. 15

    A

    I don’t quite understand how she was released from the first hospitalization- it sounds like she was still experiencing delusions and not complying with GF. Why didn’t they keep her until she had improved? Even if she was non-compliant at the time, doctors in psych wards can isolate patients and control their diets.

    Heck, the Beth Israel Deaconess Celiac Center book has a chapter on a man with terrible psoriasis from celiac. He was hospitalized so that doctors could completely eliminate gluten, because he was getting cc’d in daily life. It worked and his psoriasis cleared.

    Reply
  16. 16

    Jessica

    One of my symptoms is super weird, and it hasn’t been confirmed that it’s a symptom of my celiac disease but it definitely corresponds with gluten ingestion, and that is that my legs stop working. As of three weeks ago I accidentally ingested gluten and haven’t been able to walk since then. I pretty evenly have both physical and mental symptoms. Aside from not being able to hold food down for a month plus after glutening I also have seizures, increased depression, increased anxiety, and constant brain fog coupled with low fever that messes with my brain anyway. I have had times where the seizures were followed by periods of not being able to talk and also once where I also couldn’t move my arms. I haven’t really seen this anywhere else with celiac disease and it is super frustrating because sometimes even the doctors think that I’m faking it. Have you heard of anyone else having something like this happen with celiac disease?

    Reply
  17. 17

    Rachel

    Just one month ago, I would have thought this story was implausible. I am a 26-year-old engineer, a volunteer, and have been told by many that I have one of the kindest and happiest spirits they’ve ever met. About 3 weeks ago, something snapped. I can’t say for sure what it was, but I experienced some of the most crippling depression I’ve ever felt, and it seemed to snap on and off with no warning. I’m talking about the kind of uncontrollable sobbing and negative thoughts that made me physically sick. I could pinpoint the transition of emotions down to the second they switched; that’s how binary they were.

    Last week, I had a violent snap. I’ve never had a violent thought in my life before that day. I punched a table, smashed a dining room chair to pieces, and fractured my foot kicking a tree, among a couple other things. For my own protection, and the protection of others, I drove down to the hospital and checked myself in to be monitored by the behavioral staff. The violent snap only lasted a couple hours, but it was by far the most terrifying experience of my life.

    I already knew celiac was a possibility based on the type and frequency of digestion problems, but was making other adjustments first by the recommendation of my doctor. I have not yet received the test results, but after only 4 days gluten-free, the more extreme mood swings have subsided and my cystic acne has stopped in its tracks. I am not sure how much of that is related to the diet, but I’m very excited to find out. This is the most “normal” I have felt in a long time. I have come across this website in a lot of my piece-by-piece searches regarding celiac disease and have been impressed by the information and sense of community every time.

    Reply
    1. 17.1

      Rachel

      It turns out that I was actually experiencing serotonin syndrome. The test for celiac came back negative and the psychological manifestations got worse after removing gluten, though I am definitely gluten sensitive. “Luckily,” the manifestations were coming on at the same time every day in varying severity, so we were able to trace it to the serotonin cycle. Now we just have to figure out where all of the extra serotonin is coming from.

      If anyone is reading this because you are experiencing unexplained psychological symptoms, I would like for you to know that you are not alone. I have had to push back with every doctor to have them look past an anxiety disorder diagnosis because I could feel that this was more than that. Trust your instincts and don’t be afraid to advocate for yourself!

      Reply

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