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55 Comments

  1. 1

    skyfi

    So sorry for your loss. I cant even begin….
    I sometimes wonder just how many people on antidepressants really are actually celiac/ncgi because as long as my mom can remember thats all the only thing the doctors would say, that was just depressed and it was all in her head. Me as well.
    And I Definatly understand the robs you of yourself as a symptom. Its a dark place I don’t want to ever see again…

    My sympathies are with you, and all who might be suffering. True awareness would be so much easier if it wasn’t for hype, fads, stereo types, and the always great: “its a rare disease; if your not bone skinny and pooping like a hippo (youtube that. You’re welcome) then its all in your head, take these pills and move along.

    >.<

    Sending fellow tears and internet hugs your way!!!

    Reply
    1. 1.1

      Greg

      I got the same treatment from every Dr. I saw. They all insisted I was just depressed and needed a pill, even though I kept telling them there was something physically wrong with me. They were going to diagnose depression no matter what!

      Reply
      1. 1.1.1

        Gluten Dude

        Lots of money in depression. Celiac…not so much.

        Reply
        1. 1.1.1.1

          IrishHeart

          Sadlly, that’s the truth. Money is in prescription meds.

          Reply
          1. 1.1.1.1.1

            Darlena

            I, too, was offered antidepressants by every doctor I saw in an attempt to find out why I felt like shit. I was tempted to take them because I was desperate to feel better. But, I knew I wasn’t depressed – I was physically ill.

            My heart goes out to the letter writer.

            Reply
      2. 1.1.2

        M

        It doesn’t help when medical professionals say that there’s a physical component to depression, as if your body hurting and having digestive issues couldn’t be a wholly separate problem (i.e. gluten) on its own.

        Reply
  2. 2

    thetxlady

    Suicide is never an easy thing to deal with. The biggest thing is to try to avoid taking his choice personally. It does your health no good to stress about what MIGHT have been a different path FOR HIM.
    I suffered almost 3 decades with doctors telling me “its all in your head”. None could ever answer why when my life was amazing I was unable to feel good or lose weight even with a personal trainer, nutritionist (whose mantra was wheat bread good, white foods bad) & their anti-depressants. I even had a doc tell me I was ungrateful for “ignoring opportunities for happiness & focusing on whats not working for me. THAT is my problem & why he has to up the dosage & waste a therapist time with my whining.” Gee & people wonder how suicide becomes an option!

    Fast forward to being rushed to the ER feeling like an alien is about to explode from my guts & FINALLY getting a doc that believed something was wrong. Got an endoscopy & doc explains “its not cancer but we don’t know what IS wrong. The little hairs that move food have disappeared & that’s why your stomach hurts.” When I ask “so what do I do about it”.” Well research is ongoing so check in with me periodically, eat plenty of roughage, only whole wheat breads, & take this fiber laxitive that’s full of wheat.”

    The abuse of the medical establishment is what makes this disease so terrible. They ignore, mock, shun, give pills that don’t help (because they aren’t for the disease we actually have) & then blame us when maximum safe dosage doesnfix our issue (but usually CAUSES new ones).

    Its normal to miss family that have died. TRY to avoid “what if” because it can’t change his outcome. Becoming conscious of your own choices, careful of your own diet, & focusing on what works for you…is how you avoid the same outcome.

    Reply
  3. 3

    Jersey Girl

    GD-

    Great post. Raw stuff. I truly believe that there is a link between suicide and undiagnosed celiac. Too many people have been told just to take some pills and everything will be better, you are bleeping crazy, next patient please. The best thing we can do is get the word out there so that when someone types depression/suicide into their search engine an article or link to celiac/NCGI comes up. This is how we change things. Let’s get the word out.

    xx-
    Jersey Girl
    —————————————————-
    “How I wish, how I wish you were here. We’re just two lost souls, swimming in a fish bowl, Year after year.”
    Pink Floyd

    Reply
    1. 3.1

      Gluten Dude

      Running over the same old ground.
      What have we found?
      The same old fears.
      Wish you were here.

      Reply
  4. 4

    Kathie

    Depression is my most dreaded symptom as well, you are not alone there. Second is brainfog. But knowing the cause and knowing it will pass in a few days really helps me… I just lay low and tell myself it will be over in a short while, take some B6 (for mood) and drink extra water …the duration of all of my symptoms including this one has been reduced by half since taking a really good probiotic…I took them for probably 6 mos to a year before I looked back and noticed the change…

    Reply
  5. 5

    sb

    Most of the Serotonin cycle takes place in your gut, so, yes, untreated or poorly treated Celiac disease can cause biochemical depression, mood disorders, and other feelings that can lead to suicide. I wanted to die for 27 years, and this is not uncommon based on conversations with friends whose personalities got a lot brighter and happier after diagnosis. It took at least 1.5-2 years for all of us depending on your strictness and support networks.

    The emotional experience of alienation, isolation, desperation, self-loathing,etc. can compound the biochemical needs that are unmet. I was in therapy for a year, no meds, just trying to work though dating issues and having a job where everyone got free food yet shunned me when I asked to be treated equally. I had to go on medical leave because I started cutting. I have a new job, new coping skills, and a better take on things. However, when I meet confused, lonely, depressed, newly diagnosed Celiacs/autoimmunes, I go right back to those feelings.

    I know that we have enough to deal with, and my hope is that this comment will touch someone who gets cognitive/mood/depression symptoms and give them an understanding of how their body might be making things feel more acute than without the biochemical stuff. I often ask myself when glutened “Would I feel this strongly if it were not for the gluten in my body?” It takes me up to three weeks to recover from these symptoms, and sometimes all I can do to not cause damage in my life is keep my mouth shut except to my therapist. I’m such a bitch – then I cry for hours. I tell myself “These feelings are real, but they are not true.”

    Reply
      1. 5.1.1

        Jamie A

        Thank you for sharing your words. This… is… everything. It says so much for me.

        Reply
    1. 5.2

      RaVen Sequoia

      Dear SB,
      Thank you so much for sharing your invaluable message – it’s exactly what I’ve been and am going through right now.
      Wish we could connect via Facebook for long distance moral celiac support network. Thanks once again for your moving and educational input! So important to spread the knowledge for ignorant folks who just don’t get it.

      Reply
  6. 6

    Julie Rumreich

    Thank you for sharing on this subject. I and my three sisters have severe gluten intolerance and I’ve been diagnosed with celiac disease. Depression has been difficult for me since my early teens. My doctor started me on antidepressants in my early thirties, a few years before my gluten intolerance was finally recognized. For me, thankfully the medicine makes a big Difference and I’m very thankful for antidepressants. I do carefully stick to my GF diet, but that’s just not enough. Just antidepressants aren’t enough either. I have to work at balance in my life along with a careful diet. I think once the gluten has done a certain amount of damage it’s very difficult to reverse it, but you can manage things well and still have quality of life. I’m so sorry to hear about your brother.

    Reply
  7. 7

    Sandi

    Wow…. that was powerful. When I was reading this I felt like I must have written it in a gluten brain fog and not remembered….. My brother also committed suicide. It will have been 25 years next month. I was 21 years old, and by that time I was already suffering from what the doctors labeled IBS (of course). They attributed it to stress (of course), and the symptoms would wax and wan with my level of stress so that must be it, right?

    Life went on and I had my first child (premature-unexplained) and shorty after the depression set in, diagnosed as postpartum depression (of course) and treated with “it will go away”. I supposed it sort of did, but the GI problems escalated, I was tested for Crones because I was losing so much weight – result negative – diagnosis IBS (of course). This went on… 2 more kids, preterm labor with both (unexplained of course). The depression would come and go but I always thought it was stress, the GI symptoms were always there and fluctuated from bad to worse and I just thought that was how life was. After my child-bearing years I had a host of female problems which I thought led to my stress, which I thought led to my GI problems….

    Finally at 43 a bout of Diverticulitis (yes at 43..) led me to a GI doc that tested for Celiac and everything changed…. My youngest son was almost 13 at the time – FROM THE AGE OF 10 he had been on anti-depressants and in couseling. We’d dealt with “cutting”, rages, and talk of suicide. He was also EXTREME ADHD. When you take my family history and combine it with his depression and impulsive behavior….. well you can only imagine how terrified I stayed. All of this of course added to my “it’s all the stress” rationale.

    After I was diagnosed, learned as much as I could about it, and experienced all the “ah-ha (face-palm)” moments, I immediately had all my boys tested. It was no surprise which one was positive. Even though the Pediatrician doubted he would be because he was “overweight”. He had actually been gaining weight at a very rapid pace, which I thought was due to his overeating and sneaking food – which I thought was because of his depression….. It’s funny how we convince ourselves of things. Turns out his body was “starving” and his brain was telling him he needed food. Within a day of cutting gluten he was a different person – the ADHD took a nosedive and his overall mood shifted. He lost 25 pounds in the first 6 weeks, was completely off anti-depressants within a month, and now takes 1/6th of of his previous dose of ADHD medication. He’s a happy, healthy, well-adjusted normal high-school freshman who happens to take his lunch to school every day. ;)

    Now back to the original subject matter…… Do I think undiagnosed Celiac can lead to suicide…. Hell yes I do!! I can’t swear that my brother was Celiac and we will never know, but there is a DEFINITE possibility. What I do KNOW if what I went through, and even worse what my son went through…. I can’t even think about what could have happened if he had not been diagnosed when he was. I have no doubt that that diagnosis saved his life, and I am grateful every day that I can say “I have Celiac disease.”

    Reply
    1. 7.1

      Gluten Dude

      Your 4th paragraph…all I can say is Wow. Unreal.

      Sorry about your brother. Can’t imagine.

      Reply
      1. 7.1.1

        Sandi

        Yes Wow. My son has a very powerful story – his life was profoundly changed by his diagnosis in so many ways. He is all about spreading awareness and is planning on putting together an Awareness seminar as his Eagle Scout project. (proud Mom)

        Reply
  8. 8

    F

    I found out I have celiac disease 2 years ago, and additional gene tests revealed that I had two copies of the main gene that predisposes to gluten sensitivity and celiac, which means AT LEAST one of my parents has it too. It was a huge relief to start healing, but also the hardest thing to find out … just 2 months too late for my dad.

    My father was the calmest and most serene man you would ever meet. Insanely proud until the end, he probably had a lot more pain than we knew ever about, but dismissed any help or concern. He deteriorated so drastically in just a few years, with constant stomach issues, alcohol abuse, depression and pain. He was not a suicidal man, but extremely logical. He must have been so deep in the darkness at that point, to decide: this was not a way to live. So he shot himself in the head. It was so hard, there are no words.

    I have no doubt that undiagnosed Celiac disease took my dad.

    Reply
    1. 8.1

      Darlena

      I’m so sorry for your loss.

      Reply
  9. 9

    IrishHeart

    The words in this letter to the Dude—and in so many comments posted today–are ones I hear so often from people. My heart goes out to all of you. I am sure my Dad died of undiagnosed celiac, too and I wish with all my heart that I knew back then what I know now so I might have saved him.

    I always wonder how many people are in mental health wards because their brain function is affected by celiac and malabsorption. I did not even tell doctors (or anyone) half the stuff I was experiencing in my brain before my diagnosis for fear they would think me mad.

    Approx. 30 million Americans suffer from depression and they are treated for symptoms that may never resolve if the underlying factor isn’t treated.

    I knew damn well the cause of my depressive thinking and anxiety was organic, not psychological but that did not stop doctors from prescribing a plethora of drugs to me. I am sick to think of all the people who take drugs, receive DXes of bipolar, chronic depression, and anxiety, when they are actually ill from gluten and malabsorption.

    Doctors need to stop symptom-treating and start identifying the underlying cause. The vast majority of celiacs go undiagnosed for an average of 11 years.. All that time–lost in confusion, ill health and sadness.
    Makes me angry, truth be told.

    Reply
  10. 10

    Jess

    My father committed suicide 6 years ago and, like the brother of the person who wrote to you, I am pretty sure that he had either undiagnosed celiac disease or NCGS. He was always fatigued, was a carb addict, and his mental functioning deteriorated with time.

    I have personally experienced several episodes of depression, and it runs rampant through my family. Since going GF, the only time I ever feel depressive symptoms is after I’ve been “glutenened.”

    Thank you for us giving the opportunity to share our personal and family experiences with suicide and depression. Although it is a difficult subject to topic about, it is so important…

    Reply
  11. 11

    Gluten Dude

    Wow…I just had a major “aha” moment based on some comments above.

    My dad committed suicide 11 years ago. (Death by alcohol…I don’t recommend it.) Not saying celiac was the cause, but looking back, the man did exhibit some classic symptoms and lost his will to live in his 60’s. Didn’t help he was in a marriage from hell, but still…who knows.

    He was a good man. RIP dad.

    Reply
    1. 11.1

      F

      Thank you so much for all you do Gluten Dude. Especially living with the effects of the disease, it makes it hard for us to be active and speak out. Community and spreading awareness seems to be the key, I can only wish that people see these posts and can save more dads, brothers, sisters, mothers and others out there. <3

      Reply
  12. 12

    M

    I am stunned by this story and just really touched.

    I also have a question. For those of you who have experienced depression or other mental health problems pre-diagnosis, how long was it before you could noticeably feel a shift after you had gone gluten-free? I imagine there will be a range of responses, but was it days, weeks, months, years? I’m very curious. and thank you in advance. :)

    Reply
    1. 12.1

      IrishHeart

      It does vary, M, that’s for sure, but I was so sick, it’s hard for me to honestly say when it happened. I was relieved to know what it was that was killing me, so that alone lifted some of the oppressive fear…but I would say I noticed a major shift after 5-6 months.
      After a year, I was even better and actually hosted Thanksgiving. :)
      By 15 months, I traveled again (never could have done that when I was ill because I had cognitive issues, too) but …I had none of that worry/ruminative thinking/sadness crap going on anymore.

      I was ME again even though I was still dealing with many lingering physical symptoms.

      I had to supplement with folic acid, B-12 and D (prescription strength) because they were all low. That helped a lot. As did probiotics.
      Have to have good gut health so the seratonin levels are balanced.

      Hang in there, hon. Every day is a healing day. Believe it. ;)

      Reply
      1. 12.1.1

        M

        Thank you :)
        I am not at the 6-month mark yet. Some days are good, others I feel like a deflated balloon. I have so much of that ruminating thinking going on, all the what-ifs I had been diagnosed a decade ago, 20 years ago, etc.

        Reply
        1. 12.1.1.1

          IrishHeart

          M, Please….Don’t go there too much with all the “what ifs”. . but if you do, just let it wash over you and get mad, and then, in time, let it go.
          Very therapeutic to toss things in the back yard. You’d be surprised how far a toaster will bounce. LOL

          I have walked in your shoes, and when my body and brain was healthy again, I managed to put it in perspective and said “oh, the hell with it,time to move forward and squeeze the life out of every single day”.
          We made a trip to Key Largo so i could swim with dolphins to reaffirm I was alive! (GD has seen those pics–he will testify!) :)

          You will do this too— feel well again—once your body is healed and you normalize all the hormones, amino acids, enzymes, seratonin, vitamins, etc.

          I hardly ever do the “what if” in my head anymore…and I could do 30+ years of that, believe me (starting with “what if I could have had children?” — because this thing caused multiple miscarriages— and “what if I had only been DXED properly?, I would not have lost all those years of my life to the horror this became!”…etc etc.) but we can’t keep playing those tapes in our heads.

          I choose not to dwell on that anymore. I see each day as a gift now.:)
          The mother of all gigantic, bow-wrapped gifts!.

          You’ll get there, too. I promise. Hang tough. Let me know if I can help in any way.

          Reply
          1. 12.1.1.1.1

            Camille

            Love love love love!!! Words of wisdom. :)

            Reply
        2. 12.1.1.2

          Darlena

          Let go of the “what ifs”. Just focus on getting well and be kind to yourself.

          It took me about a month after my diagnosis to recognize that I was feeling better and about 6 months until I was walking and typing normally (my symptoms are severe joint pain). I’m close to a year GF and am feeling really good (unless I get glutened). Stay the course.

          Reply
  13. 13

    IM

    The title should say “Can UNTREATED Celiac Disease Lead to Suicide”. Some are diagnosed but refuse to comply.

    Reply
  14. 14

    Linda @ Itsy Bits And Pieces

    Wow…this post really gave me some ah ha moments, too…

    Reply
  15. 15

    GF MOM

    I almost lost my daughter to suicide. Luckily, her sister found her in time and we were able to save her. In the Psych unit they diagnosed her bipolar. That was what gluten did to her. As we sent her away to a therapeutic school at age 17 someone asked if she had been tested for Celiac Disease. We had never heard of it. Turns out there was a reason for the anemia that couldn’t be fixed and the starvation and excessive eating yet being stick thin, the depression, anxiety, stomach aches……

    The therapeutic school was amazed by her 180 degree turn around on a GF diet. They changed their whole dietary program as a result.

    I am so sorry for the loss each of you have suffered. I can only hope that people like all of you will keep sharing the stories to prevent other unbearable losses. Thanks GD for letting everyone share the horrors of depression, anxiety and the crap we all deal with due to this disease. There are so many wise words too. We all need to hear about how to move forward in positive ways for ourselves. Thanks to all for sharing!

    Reply
    1. 15.1

      Rachel

      I too have been suicidal on and off since high school. People tried to pass it off as stress related to the pressures of adolescence, and then eventually I was diagnosed as bipolar. But I’ve never really believed that I was bipolar. Most of the time I was depressed, and once in a while (like 2 days out of a year) I would suddenly not be happy. The depression started around the same time that I developed severe menstrual issues that were so bad I almost bled to death. Anyway, I’ve only been gluten-free for 9 days but I already have noticed major improvements physically, and I even seem to be able to focus a little better and my mood has been great the last few days. That might be due to the fact that I don’t have constant cramps, nausea, diarrhea, etc. but I’m really hoping that in time I will notice a real difference and not be “bipolar” at all.

      Reply
      1. 15.1.1

        IrishHeart

        Stay the course, Rachel. I can’t tell you how many people have reported a huge change in their moods and depressive/ bipolar symptoms after a few months off gluten.
        Hang in there, hon. Best wishes!

        Reply
  16. 16

    Merlow

    Thank you so much for sharing my story! I read every comment and it really surprised me how many people have been touched by a suicide in their family.

    We can’t help but wonder if our lost loved ones were in fact celiac when we ourselves have gone through the deepest downs before being diagnosed.

    I love how your blog connects us where other people just don’t understand or know what to say. You posting my comment, made me feel like I was able to use my family’s pain to help others.

    I hope more physicians screen for CD before writing a prescription for antidepressants. I know I would have been on the road to recovery much sooner had this happened.

    Thanks again, means more than you know.

    Reply
    1. 16.1

      Gluten Dude

      “I love how your blog connects us where other people just don’t understand or know what to say. You posting my comment, made me feel like I was able to use my family’s pain to help others.”

      That’s what it’s all about.

      By the way…I love your wine ;)

      Reply
  17. 17

    Colette

    I’m so sorry for your loss, thank you for sharing your story. I have celiac disease and suffer from depression/anxiety also. I was on anti-depressants for years and would be in the emergency rooms from panic attacks regularly. eventually I became agoraphobic I couldn’t leave the house without a family member and would rarely even leave my bedroom most days. After I went gluten free I noticed a massive difference in my mental health. I still struggle with depression/anxiety/agoraphobia but my symptoms have greatly reduced. Although I still suffer from them I am able to have more control over my life. I wonder if due to the absorption issues with celiac if the medication was even having an effect on me at all. I am now free of medications and am doing better than I ever did on them. I notice that when I get glutened that I will start to have panic attack symptoms and depressive episodes occur more. I’ve read that people with Bipolar disorder have great improvements after going gluten free even if they are not Celiac, Imagine what a difference having a diagnosis would make in someone’s life that is suffering, I hope they will encourage celiac testing in those with mental illnesses. We don’t want anyone else to suffer the loss of a loved one.

    Reply
  18. 18

    Jmarn

    GD I am so sorry for yours and all the others losses! I too was on anti-depressants. What saddens me more than anything is I have a niece and a nephew both on lithium. I have begged and pleaded knowing it has to run in our family, for my sis to consider having them tested..she just refuses. My Mom is unstable emotionally my father is a major alcoholic and my sis has suffered a lifetime of endometriosis and fibromyalgia. It sucks when deep down we know what will help but our loved ones just don’t want the help.

    My heart goes out to all that suffer…I seriously want to scream from the roof tops ” Wake up world this is a real and debilitating disease”.

    My hope is that ones like our dear “GD” who have a passion for getting the word out and helping others…will be one more step towards awareness. WE WILL PREVAIL!

    To all those who have mentioned the psychological effects of being glutened…”AMEN” it is my primary symptom. The digestive are actual minimal in comparison!

    Hugs, love and compassion to all!

    Reply
  19. 19

    Dr. Tom O'Bryan

    Dear Gluten Dude

    The topic of suicide and CD is a critical one to address. Unfortunately there is a misconception that going on a GFD will address the depression that may have been strongly fueled, or even caused by CD. Although there is overpowering evidence that a GFD is a prerequisite in attempts to address depression and the entire field of Affective Disorders, the misconception is that it is enough. When one reads the literature, it is clear that a GFD helps, tremendously, but for some IT IS NOT ENOUGH.

    One of the benefits of Socialized Medicine is that there are records on everyone. Sweden is such a country.
    In a nationwide study of 29,000 patients with biopsy-verified
    CD, the Authors found a moderately but significantly increased risk of suicide.There was no differentiation between those who were strict or not with a GFD. The increased risk was seen both in individuals diagnosed as children and adults.
    -CD diagnosed in childhood was associated with a 40% increase in suicide risk (with or without a GFD)!!!
    -of the three categories of diagnosis (total villous atrophy, no atrophy but positive blood work, no atrophy no positive blood work but positive inflammation in the intestines), the worst risk by far was the third-a 96% increased risk of suicide (compared to non-celiacs) in those who did NOT have villous atrophy, did NOT have positive blood work, and only had inflammation in the intestines. 96%!
    My question is, “How are you going to know if you have inflammation in the intestines”? Our doctors are not educated to test for it. It is not obvious. How are you going to know?
    And in the same large group of 29,000 Celiacs, not only was there an increased risk of suicide, there was an increased risk of early death.
    If you were a Celiac (total villous atrophy) = 39% increased risk of early death
    If you were negative on biopsy but positive on blood work = 35% increased risk of early death (so we CAN NOT only act when there has been a diagnosis of villous atrophy and CD)-we must act aggressively with positive blood work.

    And the worst? Just like for suicides, the worst, by far, was those with no villous atrophy, no positive blood work, just positive inflammation in the intestines = 72% increased risk of early death. Double that of CD!!!

    The Author’s summary? “The risk for suicide amongst patients with CD seems to be increased in all age groups.

    We MUST educate our people suffering with any stage of Gluten Sensitivity so they demand of their doctors more current approaches.

    We must of course strictly apply a GFD. But that is only the beginning. We MUST become educated as consumers of knowledge. That was the purpose of ‘A Grain of Truth’-the Gluten eSummit. People MUST be educated. Doctors MUST be educated as to what is current.

    Where does the inflammation come from that remains even on a GFD? What is Cross-Reactivity? With foods? With bacteria? With Viruses? How does the intestinal bacteria sometimes fuel the continuing inflammation that doubles the mortality? What is SIBO? What about GMO foods and their effect on the development of inflammation and CD?

    People must educate themselves. Ask the right questions and you have a chance of finding the right answer. Ask the wrong questions and you roll the dice as one of the statistics.

    You have an incredible venue, Gluten Dude, as an Opinion Leader. We must ask the right questions. Thank you-Pay it forward.

    http://www.ncbi.nlm.nih.gov/pubmed/21419726
    http://www.ncbi.nlm.nih.gov/pubmed/19755695

    Reply
    1. 19.1

      Merlow

      Thank you for this post. Very informative and concerning as well.

      Reply
  20. 20

    Gigi

    This piece caught my eye. Exactly 11 months ago today, I lost my only sibling to suicide. He did not have CD that I am aware; however I do. Once touched by suicide, sound or sight of the word draws you in – perhaps in hope of finding a much-needed answer (one you know you will never find). It is the same with CD or any condition. When we relate, we are captivated. You got me on both counts.

    A link between CD and depression does exist. I’ve shared the science behind that link with my own readers. Because suicide can be the result of long-term depression (my brother was diagnosed bipolar some years ago) due to neurochemical changes, it stands to reason anything that alters neurochemistry over time (including CD, which can cause several neurological problems) can lead to depression (among many other issues).

    Great topic to share. Awareness is incredibly important and this is a great way to get our attention! :)

    Gigi

    Reply
  21. 21

    Tina

    To Gluten Dude and everyone who has lost a loved one to suicide,

    I am deeply sorry for your loss. There is a very real connection between celiac disease and depression. Before I was diagnosed, I struggled with suicidal thoughts because my body was in so much pain that I could not imagine continuing to live in that state. For several years, I went to see a gastroenterologist, begging him to find out what was wrong with me. After several endoscopies and other invasive exams, the only answer he had for me was that I had acid reflux. I decided to go through an invasive surgical procedure to try and stop the constant pain in my stomach. Before the surgery, I went to see a different gastroenterologist to get a second opinion. I believe that it was a true miracle that the second specialist had an entirely different knowledge of celiac disease. He took one look at me and said that celiac is most likely my problem. Through a simple blood test, he diagnosed me with celiac disease. The diagnosis not only changed my life, it saved my life. If only doctors would prescribe the celiac blood test more frequently, so many more people could be saved from excruciating pain.

    Reply
  22. 22

    CD

    Okay, I just had to comment on this post because this is one of the most heartbreaking things about this disease. The fact that it does cause real and severe depression in many people who are undiagnosed and continue to eat gluten.

    I was undiagnosed for 20 years and prescribed everything under the sun for depression and anxiety/ panic disorder. After I finally got the correct diagnosis after years of suffering and hospitalizations, I became healthy and got off of every single prescription medication I was taking. I haven’t needed or wanted one again since. They never helped anyway because my body was constantly being poisoned. It’s no wonder that Celiac affects the brain and emotions because your mind is literally being starved of the nutrients it needs.

    My life has changed 100%. But before I was diagnosed I was very suicidal. Being gluten free has literally saved my life. I have no doubt I would not be here today if I had not gotten the diagnosis when I did.

    Thank you for sharing this with everyone.

    Reply
  23. 23

    Sohail

    I am from India. I am 32 now
    sorry for my bad English
    I have diagnosed Celiac (gluten intolerance) by myself three days ago.
    I think I was 15 at that time when I feel my legs shivering and back pain. I had polio in my right leg.
    I think it was polio effect but back pain was being worst and worst as time passes.
    But two years ago all my health was finished I thought I’ll be dead soon.
    I was unable to walk just 50 meters my heart begins pounding I wasn’t able to breath hair fall memory problem eyesight problem weight gain bad mood anaemia. And one day I found undigested food in my stools that I can clearly see. I thought I have digestion problem. I visited to many doctors they do endoscopy and colonscopy and told me that your digestion habits are not generated perfect since your childhood. And given some medicine. This time I feel ok but not good. Then after some weeks I was in same situation. I goto another doctors they say you have anxiety. Like this I lost 1 year my mother told me to see unani doctor then I started visiting unani or herbal treatments. Every time he give me new medicine I feel little changes. I was totally frustrated and thought to do some research on Internet I put my symptoms in Google search on very first page it was about celiac. I think I might give a try on gluten free.
    I changed my diet to GF this is my third day I am feeling energetic no difficulties in walking more than 300 meters and no breathlessness no constipation. And then I try 1 inch x 1 inch peice of bread within 15 minutes my heart started palpitations.
    I will never take any gluten rest of my life.

    Reply
  24. 24

    Dr. Tom O'Bryan

    Congratulations Sohail on discovering an underlying trigger to your many symptoms. The world is yours to discover now without pain, without palpitations and with a full brain of blood flow(Gluten Sensitivity often reduces blood flow to the brain thus contributing to depression, ‘fuzzy thinking’ and much more.
    Congratulations again.

    Reply
  25. 25

    SOHAIL AHMAD

    its been 6 days i have started GF diet. but i have passing problem may be lack of fiber in my diet.
    please suggest. bcoz i am not consulting any doctor. unani and ayurveda remedies will be great for me and also help with diet plan
    thanks

    Reply
  26. 26

    หมอนรองกระดูกทับเส้นประสาท

    For example, you may be pushing your spine into the
    ground, causing pressure on its posterior. What causes illnesses is inflammation, which is
    caused by a high-sugar diet, said obesity expert Dr.
    When you see some cracks in the walls you immediately check
    if the house lacks foundation.

    Reply
  27. 27

    haoqing

    i was on the verge of suicide too. after suffering celiac and other food sensitive for all my life till mid 20s. i have had enough, for multiple times i want to jump off something to end it all.
    i am not able to adapt to the society, no friends, poor diet, no help or understanding. i went to hopital for severe weight loss and liver damage, then to the psychiatric ward as well. all along i was mistreated.
    Eating gluten will make me extremely suicidal, and i am sure it’ biological rather than pyschological. it was a feeling of death that you won’t make it another day, with heart pahpitation, hands shaking, sweating prefusely. you are trying to make it into word but your brain is frozen, your gut is frozen, quickily weight loss in only a matter of days. everything hit like a servere flu but only worse. there is no hope, then you will be like a retard for weeks to follow, literally, no energy or focus no memory or nothing.
    the last impulse of suicide is the one i have been brewing for quite a long time, by that time i was gluten free, but even after logically putting everything in order, i see no hope of living, i was calm and normal, but suicidal in a different way.
    till now i am stilll very on the verge of suiciding and without much help on the way, only me to pump any ounce of positivity into every day living.
    it is difficult, because being understood is something every human lives for, if you are alone, it has no meaning

    Reply
  28. 28

    Pippy

    This breaks my heart, I am sorry for the loss or your brother. I can empathize well with what he might have been feeling, I too want to die. I am so freaking tired and just have no desire to fight this disease and ignorant or stupid people any more.

    Reply
    1. 28.1

      Gluten Dude

      Please hang in there Pippy. Find a good support system. They’re out there.

      Reply
      1. 28.1.1

        Pippy

        I’m trying, thank you. It is just all just sooo frustrating! I’ve been hoping to start a support group in my area, but have not felt well enough to get it going, and the closest groups are too far for me to drive. I’ve not given up, but I sure do get to thinking too much about how nice it would be to just stop all this nonsense. I am sure most with CD understand.

        Reply
  29. 29

    Robyn S

    This is a sad but sorry tale that has been repeated too many times. Aside from hearing all sorts of GI, mental health and physical signs and symptoms in my patients (and yes, I do try to get them to be aware and make positive changes), I have a family history of depression and suicide on my Mum’s side (great-great-grandfather blew his brains out with a shotgun, great grand uncle gassed himself in the oven, mother took pills but survived), alcoholism on both sides of the family and plenty of suicidal thoughts, depression and PND x2 for myself.

    In fact, it wasn’t until my second child was 1 year old, that I found out (thankyou www!) that gluten is transferred through breastmilk, and given we knew my son was allergic to wheat (hives at 7 months old from egg pasta…), I immediately cut out the gluten. Little did I know what effect it was going to have on ME when I’d only done it to help my son!! It co-incided with the biggest health change of my life, which was totally unexpected. In fact, a friend commented just recently about this whole gluten saga that was started due to my son that “he probably saved your life”, and when I thought about it, she was right: my son did save my life.

    Although I am now probably the healthiest I’ve ever been, can I just say that the past 12-18 months have been some of the worst of my life, too, and I am very serious when I write that I would never want to repeat the year 2016. Gluten is not my friend, nor my family’s friend, and it never has been. Cutting it out is all very well, but when small bits make it back into your diet (accidentally), the reactions can be downright scary. I’ve delved into family history, my own medical history, far, far too much information out there and come to the conclusion, even without the positive HLA DQ2 or DQ8 markers present, that I am either a rare Coeliac or more likely a NCGS/NCGI person. I certainly don’t need to eat gluten for 8-12 weeks to determine whether or not I have a problem with it, it’s pretty darned obvious that I (and all users on here) have a horrible myriad of symptoms that occur from ingesting even the tiniest hint of gluten! I make all my own meals now, I wash any cans before opening them, we grow our own vegetables and fruit. No-one is allowed to bring any gluten-containing foods into our house. I’d rather starve when I’m out than risk being glutened. So I always take snacks with me. The idea of going out to a restaurant is becoming much less appealing every day.

    But it was in fact just today that I realised, listening to a Sarah Brightman song, that I wasn’t living in the past anymore. My thoughts are so much better, I’m all together a much better, switched on person who can get back to calm, positive thoughts very quickly (even if the kids still drive me insane some days (like all parents suffer!), ha ha). Being gluten-free is one of the best health choices I could have ever made for my self and my family.

    I’m just so very glad that I felt compelled to make changes in my life for my child, and that I was lucky enough that these changes managed to, well, save me in the process. Aside from my mental health being good now, my dentition is better (no more cavities!), my strength & muscle tone is better, my energy levels are better, my bowels are functioning better, I have minimal joint pain now and I’m barely having any crazy, nightmarish dreams anymore. And all this at 38. Makes you feel for others that don’t get the diagnosis of ‘coeliac’ until they’re virtually ‘retiree’ age, which unfortunately, is about the average age of diagnosis :-(

    Reply

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