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115 Comments

  1. 1

    Geraldine

    Hi I just read Dear Gluten Dude: I’m Suicidal. In an odd way it really is comforting to know that its not just me. Not that I would wish it on anyone. I have felt all the horrors of Coeliac and still am even though I am rigid about my diet. One thing I cant get my head around though….I cant loose weight!!!!!!!!! Anyone I know with Coeliac is under weight. have you come across this before????
    Ger

    Reply
    1. 1.1

      Bethanne

      HIj Geraldine I also can’t lose weight and neither can my sister. My sister is obese and she really needs to get the pounds off. After a glutening, she’ll lose some weight and then it pops right back on. I’m overweight, not obese anymore, thank god, but trying to get down to a healthy weight has been a horror. The funny thing is that when i’ve been accidentally glutened, I find myself gaining weight. I don’t have the typical symptoms of CD. I just gag and feel like I’m going to die and end up bedridden.

      As for our CD depressed friend, you are not alone. Over the last two weeks I have been severly ill. I texted my sister the other night and told her that I cannot take the pain anymore and I just want to kill myself. My husband and sister keep telling me to hang in there. In fact, last night, I asked my husband if I will ever feel better or if my life is gonna be shit like this forever. I have been gluten free since April and probably feel more tired and achy than I ever have in my whole life and I cry often over the pain in my whole body. I too, want to die. I am not so extreme that I “have a plan” as they say, but I want my life back. I want my energy back to be the busy bee that I used to be. I want to make to work at a decent hour and not have my boss looking at me because it’s 10:30 and I’m strolling in looking like death. I want to get up and be able to take care of my children. I want to come home from work and have the energy to play and clean and cook all those lovely foods I see in the cookbooks. I want to feel better.

      Reply
      1. 1.1.1

        Bethanne

        Wow my grammar totally sucked. Too bad I can’t edit all that, but you get the gist.

        Reply
        1. 1.1.1.1

          Geraldine

          Hi Bethanne

          Its the pits having this condition! I am glad to hear that Im not the only one to have a weight problem as I was beginning to think I had gotten the wrong diagnosis. I have never had to even think about my weight until I went on this God forsaken diet and then BAM!!!! Two stone in as many hours!!!!! ( slight exaggeration ) I am like a maniac now. I run, I dance, I cycle and I even wash my own windows!!!!! Im the fattest fit person you ever saw!!!! Mind you, Im not giving up. I just bought a beautiful red dress for Christmas and I shall be removing the size tag!!!!
          Thanks for sharing your experience.
          Ger x

          Reply
          1. 1.1.1.1.1

            MaraKate

            I love it, the fattest fit girl!!! I also run, box, and exercise alot but can’t lose the weight. Some days I had to stop becasuse I had a hard time breathing. I walked 7 miles yesterday on top of a job with lots of walking but can’t lose the extra 20 lbs. And now on this GF I am hungry, but at least the nausea and heartburn have lessened.

            Reply
            1. Dee

              Old post I know.

              Even though I put on 20 pounds since diagnosis, I am one of the “skinnies” (bottom of the BMI), but for me it is because my gut is still very sensitive. With the exception of a couple cross contamination’s, I have been gf for over four years. The troubles are not just gluten for me, I cannot eat many foods do to allergies or severe heartburn/burping. My intake is small because I cannot digest foods well, so it is hard to take in enough calories.
              After I eat, I am always sick to my stomach, underline ALWAYS. The bloat comes with every meal; nausea keeps me thin. I DREAD mealtime and often feel a literal panic over it. Being skinny is not all that; I would give anything to enjoy food. A few extra fat rolls would be pretty nice right now. If they are cute on babies, they are cute on us ;)

              So there!

              D

              Reply
      2. 1.1.2

        Amy

        I know how you feel. I found this site today because I was looking for people who may know the way I feel. I wish you felt better. Just today I was thinking those terrible thoughts about not being here anymore. Although I don’t think it is important to feel “normal” I wish I did. I am allergic to EVERYTHING it seems. It started with gluten and now everything is killing me. I am trying to follow the paleo diet for relief. See if it works for you. I think it is a good way to eat. And it seems to agree most with celiacs. Thanks for listening. Be well

        Reply
        1. 1.1.2.1

          The Gluten Dude

          Hang in there Amy. Yes…please try the Paleo. I did the Whole30 program and it’s really helped me a lot.

          https://glutendude.com/gluten/paleo-whole30-gluten-free/

          Reply
        2. 1.1.2.2

          Mary

          In the same boat with you Amy. Peace.

          Reply
      3. 1.1.3

        Vic

        STOP eating anything with casein and milk. Any kind of milk! It creates pain. I have six buldged disks and haven’t had pain in three years. I no longer take any medicine. I have pain only when I slip up and eat something with lactose, milk, or casein. Read the other terms for these ingredients ,learn the ingredients.And you will feel like new. You have to read labels and find out where you are getting gluten n milk from. if it’s processed don’t eat it! Organic fresh and grass fed meats.It takes about four months and you will be amazed!

        Reply
    2. 1.2

      Cat

      Hi Geraldine…I’m one of the lucky ones that ‘gained’ weight before diagnosis – almost 100lbs. On a 5’2″ frame, well, all I can say is people kept thinking everything was in my head and I’m not on a balanced diet. In fact, I must be obese.

      You’re not alone in this. Even though I’m now back to my original weight of 112lbs, I don’t fluctuate whatsoever. It stays exactly the same no matter how much I eat, or don’t eat.

      Reply
      1. 1.2.1

        Geraldine

        Hi Cat
        Many thanks for sharing your experience. I was worried about it as everyone seems to loose weight but I gain it by the sack!!!!!!!!!!!
        Just need to stick with it and keep pounding the treadmill.
        X Ger

        Reply
        1. 1.2.1.1

          Carla

          Hi Geraldine and Cat,

          I, too, gained weight. It’s been 2 yrs, have yet to lose any and am eating balanced meals too. Nutritionist said it can take a long time for the body to recover from the stress as it’s extremely traumatic for Celiacs. I was cautioned away from working out too much as that adds more stress on an already recovering body. Still working on finding a happy medium. Has anyone heard about short intense workouts for some Celiacs?

          Reply
      2. 1.2.2

        Danielle

        How did you lose the weight, I am in the same situation, with the exception of being 4’11!

        Reply
    3. 1.3

      Carla

      Yes! Finally some respondents with the opposite of losing weight!! Believe us, it’s equally frustrating not being able to lose weight now. I ignore it now, but people think we gained because we eat too much or too much sugar, etc. etc. We eat balanced meals (which is very healthy if you cut out rice, bread, sugars other than fruits) and get exercise. We eat better than many who can eat anything under the sun and not gain…grrr. I recently found the Gabriel Method and am considering incorporating it into meditation. Otherwise, it is very depressing at times…going on 2 years without change. Ugh. Keeping chin up though :)

      Reply
      1. 1.3.1

        Cat

        Something I found out quite by accident, is that when I got glutened, I gained weight over night. I also cut meat and am primarily Vegan…which also has it’s drawbacks – being perpetually hungry for some reason. My daughter was on the opposite end, she lost weight. But I have a sister whose symptoms were exactly like mine – weight gained galore. She’s not vigilant with her diet and gets glutened more offten than not..thus, she hangs on to the weight. I also found with my daughter and I, that we are extremely sensitive to the PPM of gluten. We’ve recently found a mill here in Ontario Canada whose products are all confirmed 5ppms or less…so we’re buying in bulk and making our own breads etc. But it’s a long hard road sometimes. Maybe double check your sources of foods to see if you can get accurate PPM levels. Just a thought

        Cheers!

        Reply
        1. 1.3.1.1

          Carla

          Thanks, Cat! Being that I’m uncertain what you mean by “glutened”- I will say that I’ve been OFF gluten of any kind for almost 2 years. Mostly a Piscatarian now and eat organic. I will continue to check with companies who print GF or Gluten Free on their labels. However, I rarely buy prepackaged items.

          Reply
    4. 1.4

      Hetty

      Are you eating a lot of prepared GF packaging food? If so, stay away from them. Start to cook from scratch, eat healthy fats; bacon, avocado, olives, olive and avocado oil, sweet potatoes etc etc

      Reply
  2. 2

    Donna

    Wow! Dude…I so feel for him. It F-ING sucks having CD. I’m also very glad that he found your blog! It helps tons knowing that we are not alone! We can cry, laugh, rage or just blab and there are tons of other people who know EXACTLY what we are going through. I mean, no two Celiacs are the same, but we are all in the same boat! Thanks for sharing this heart wrenching story! Not a great way to start hump day, but if he finds the help he needs right here then it’s a GREAT hump day!

    Reply
  3. 3

    Carolyn

    Wow! I can relate! I suffered for 15 years, and was consistently told I had anxiety and depression. When I was sick enough to have to leave my job, and not improving at all under my former physician’s care, I was able to figure this out on my own. Changed docs, had a blood screen done with a positive result, and I am finally on the road to healing. What a journey! How many doctors on average do adult celiacs go through before one takes this seriously??

    Reply
  4. 4

    The Atomic Mom

    Oh my heart is breaking for this man! Don’t give up, just don’t. Keep on going. And now that you’ve found this website you know you have friends. You say you believe in Christ, so do I. Ask him for help, ask him for comfort and direction — mostly pray for a doctor that will help you! Best of luck friend, and you are not alone!

    Reply
  5. 5

    Lesley

    I just want to let you know there is a rather tight dude based community here that is always here to listen

    The journey, in all it’s aspects, is different for each and every Celiac
    but I think I can safely speak for us friends of the dude when I say you are not alone and you are loved. Loved not only by your family but by this new extended family. We are here, we are listening and perhaps most importantly we understand and share in the struggle of Celiac.

    Lesley

    Ps-sorry if I spoke out of turn Dude.

    Reply
  6. 6

    J

    Do not give up.

    Do not let it win.

    Trust me. I know. I know. By the grace of God I got out of it. It was really bad in my teens and part of my twenties. I had lots of anxiety and was depressed. Little did I know that gluten was the majority of the problem. I’m also one those that I know I have celiac disease but I just don’t have the insurance for the testing. Now in my thirties I feel better than I have ever felt. I continue to work on myself and that’s all you can do.

    I now do yoga and meditations. I stick to my gluten free lifestyle—my life depends on it. I changed the way I think. By the way I also can’t have coconut and oats among other things.

    My point is to just gather all your strength and beat the hell out this thing. Find what works for you and move on to a better phase. It’s hard but I’m telling you that’s what you need to strive through to get to a place of acceptance and love yourself. Once you find your groove I truly hope that you find happiness as I have.

    Reply
  7. 7

    Emma

    I was told it was stress for the first few years (though I was still at school and didn’t improve during the holidays). I knew this wasn’t the case but couldn’t work out what was actually wrong with me. By the time I was 18/19 I was really very ill and thought I was probably dying.

    When I went to university I had to change doctors and initially avoided going to see her, since doctors had never been very helpful. Eventually I had to go to get some more iron tablets. She took one look at me and said I needed to be tested for coeliac disease. And that was that.

    Obviously I am lucky in some respects that my tests came back clearly positive. However, it did take quite a long time before I really started to feel better. It’s been over five years now and I still have ups and downs, particularly as I now get reactions to even trace amounts of gluten, which wasn’t the case initially. This causes considerable difficulties for me socially, especially as I’m still in my 20s and not married/settled down with someone I know will support me. However, my family are helpful and, in general, my health has been on an upward trend. So there is always hope.

    Reply
  8. 8

    Jenn smith

    One of my main gluten symptoms is suicidal thoughts. I have found a chiropractic neurologist that has helped me by balancing my brain.

    Reply
    1. 8.1

      Donna

      I have never heard of a chiropractic neurologist!!!!! Cool! BUT…I do see a chiropractor once every two weeks. Unfortunately, I have Fibromyalgia as well as CD. My chiropractor can tell when I’ve been glutened just by touching me. It is well worth the copay…that’s for sure!!!!

      Reply
  9. 9

    Tracey

    Dear Gentleman thank you for sharing your story. Hang in there! Suicide is never an option.

    You obviously have a family who loves you and a God for you to turn to when you need help. I’ve lifted a prayer of healing for you. I pray you find inner peace and strength to endure the physical pain and wisdom to find the right diet to suit your specific nutritional needs. God is with you, remember to pray for His guidance and support especially when things are bleak.

    Reply
  10. 10

    Jersey Girl

    “There have been times when I felt suicidal and I would stop my head from going in that direction of negativity because I thought there’d be something I’d miss that was funny in the future. If there’s a chance I’m going to laugh tomorrow then I want to live to experience that.”
    Dave Navarro

    thoughts/prayers to you love, don’t let that f’er win. you can do this.

    xo
    jersey girl

    Reply
    1. 10.1

      Sherri

      Thank you so much for posting this Jersey Girl …

      This quote is one I will copy and paste up … it really means something to me …

      Thank you :)

      Reply
    2. 10.2

      The Gluten Dude

      Love it JG…

      Reply
  11. 11

    David

    I’ve got a story that might cheer up the badly depressed. (Forgive me if I’ve already told it)

    I too went through all the nonsense about my drastic weight loss being psychological or from drug abuse. My friends were afraid I was contagious and shunned me. Then I went into the hospital after passing out while having assenfuego (you know, burning diarrhea) and vomiting at the same time. That’s hard to do, puke between your legs while sitting on a toilet and an original way to to become famous at school.

    The doctors were perplexed, baffled and clueless. I was supposed to have cancer. Where was the cancer? We must find the cancer! A GI series found nothing. A colonoscopy found nothing. So a new test would be done, some sort of bizarre search for cancerous feces taken in situ from my bowel with a large syringe like thing.

    I’m on an exam table, hands and knees when the doctor lubes by bottom. Then he says “Take deep breaths and try to relax” and slides the thing which is the diameter of a soup can into my rectum. I was unable to take deep breaths because I couldn’t breathe from the pain. I managed to gasp “TAKE IT OUT!” and the doctor muttered “Well, it’s not working anyway” and withdrew the thing. I has sweat dripping off my head, moaning from the pain when I felt the inevitable and unavoidable and unstoppable passage of assenfuego about to Krakatoa from my bottom. I yelled “Lookout!” then BBLLLLAAAUUURRT I exploded and it hit the doctor right in the chest. Call it the Monty Python gene, but I couldn’t stop laughing.

    In all seriousness, tell the doctor(s) to try a biopsy if possible. That might be the surest way to get a culture that will definitely determine what it making you so ill. Best of luck, Best wishes, and hang around a while. We’ve all been there in one way or another.

    Reply
    1. 11.1

      Donna

      OMG David!!!! Is that a true story? I am ROFLMFAO!!!!! A much needed light moment in my day!!!!!! haaaaa haaa haaaaaaaaaaaa!!!!!!

      Reply
      1. 11.1.1

        David

        Yeah, I’m afraid so. I really did assenfuego on the doctor, and we all know how bad CD assenfuego can smell…….

        Reply
        1. 11.1.1.1

          Donna

          My husband says exactly that. After I’ve been glutened I will sometimes wake up and he has a dishtowel wrapped around his nose and mouth with Febreze sprayed on it!!!!!!!

          Reply
          1. 11.1.1.1.1
            1. Mary

              Thanks for that David. I so totally needed that! Brand spanking new to this site, I’ve been alternately relieved and stressed reading non-stop for 2 hrs and getting completely overwhelmed. Then I read this! Freakin hilarious.

              Reply
          2. 11.1.1.1.2

            Mary

            Have got to share this story with my ex. We’re on good terms and he’ll get a good laugh. Didn’t happen often but when it did I’ll bet his wishes he thought of that!

            Reply
            1. Mary

              meant to mention you Donna :)

              Reply
    2. 11.2

      Cat

      Hysterical – sort of LOL

      Reply
      1. 11.2.1

        Sherri

        Mine was more of an “eeeewwww gross … seriously?! …” and then I just had to LMAO ;)

        Reply
    3. 11.3

      The Gluten Dude

      David…I’m not sure if I should laugh or go take a shower.

      Reply
      1. 11.3.1

        David

        Definitely the shower.

        Reply
    4. 11.4

      CaliSparrow

      I’m very angry at my doctors right now and also feeling at the end of my rope. I can totally relate to much of this guy’s story. It’s amazing the similarities and that just makes me angrier. I have a “dream team” of doctors and my massage therapist mentioned being gluten-free to me. That’s how I discovered this after spending EIGHT YEARS IN BED!

      How many people out there are suffering from these mental effects of Celiac and are put on benzos?!

      Thanks for this story, David. It made me laugh!

      Thank you for posting this Gluten Dude.

      Reply
  12. 12

    Sherri

    I so can hear the pain in this story … and as a fellow Celiac and as most of us do … I can feel the pain as well, and have felt this kind of pain in the past, present and certain future.

    But GD is correct … there definitely will be bad periods, but there also will be good periods … hang in there.

    You talk of a family that loves you and are so instrumental for your fight to hold on and work through the worst of it … that is good for the heart. And as has been said … we are out here and we understand and I am sending my own thoughts to you.

    If we all strive to send positive and loving thoughts out to each other maybe we can break some of the horrible depression, sadness and suicidal thoughts that do come along with dealing and healing … I have been diagnosed for almost 5 years now and I still have my ups and downs … but it does seriously help knowing that I am not CRAZY that I am just someone trying to live with Celiac Disease … or even all the people trying to live with gluten intolerance and all the other stuff that comes with it all.

    Hang on … and cyber-ly we can HANG ON to each other …
    Hugs

    Reply
  13. 13

    Bree

    I read all these comments and realize I am not alone. It feels soooo good not to be crazy, stressed, eating junk and all the other guesses that were made over the years. I actual am sick. I was not wrong.

    I was only diagnosed after being treated for everything BUT the problem. I was tested by a Dr., who while having Celiac’s herself, never put two and two together until I hit that malnutrition stage.

    I was so ready to give up numerous times. It seems to be a common thought for all of us when we are at our worst, or have once again managed to be poisoned by the unseen.

    I have been GF for just over two years and am just really feeling the full benefits of the diet. I have more energy and less pain.

    But every story on here has hit home. Which one of us has not looked at a GF menu and wondered ” what did they do to a plain baked potato to make it poison?’

    I have some serious non-food reactions also. I found that wheat-germ oil, and oatmeal used in make-up, skin softeners, cream rinses all affect me in some way. After finding all these in GF forms, my scalp has never itched less, my eyes don’t swell shut if I forget to remove makeup or miss some. My skin is clearer than ever and my nails actually started to grow without the white ridges for the first time this year.

    Never surrender! Always remember we are not alone!

    Reply
    1. 13.1

      Mary

      This story is heart breaking as many of us have felt that way.
      Bree, I found that I have to use only gluten free hair and body products, including toothpaste. I think our skin is our biggest organ…so it makes sense for those of us who are super sensitive.

      Reply
  14. 14

    Connie

    If it was just stress we’d be on the cover page of Newsweek as the new epidemic of concern to everyone. Instead, we’re forced to suffer in relative silence.

    ::grumbles::

    Maybe I’m just pessimistic this week, but it seems like we need to fight back somehow. Is there a medical certification for celiac? Or are we just looking to gastroenterologists, nutritionists, and the random primary care doc who knows what we’re talking about?

    I know when I started planning our annual conference no one gave a rats behind about the food during the conference. When I moved to a much more holistic view (including providing gluten free entrees, dairy free alternatives, and more vegetarian food) I had people coming out of the woodwork telling me how thankful they were. I even had one who told me they were amazed they weren’t sick all week and wanted to know what I did to the food (we had a conversation about severe gluten intolerance, and sure enough, her registration this year reflects it…) Clearly, dietary issues are really important and yet…no one medical is listening.

    Reply
    1. 14.1

      IrishHeart

      Connie said:

      “Maybe I’m just pessimistic this week, but it seems like we need to fight back somehow. Is there a medical certification for celiac? Or are we just looking to gastroenterologists, nutritionists, and the random primary care doc who knows what we’re talking about?”

      sorry babe, the answer is no (unless your GI is celiac -savvy)
      … and… yes–that is where we look, but it may not be the best place.

      We have to rely on reputable celiac specialists, (Dr. Green, Fasano, Murray and Guandalino) celiac nutritionists (Tricia Thompson), GIG and some very savvy fellow celiacs.

      It’s not rocket science, it’s often common sense.

      Good nutrition = healing. You’re doing good work! Do not despair.

      Reply
    2. 14.2

      Martha Lardo

      There is a place in Chicago Illinois… It is the The University of Chicago Celiac Disease Center. They diagnose, treat and are working on more accurate and less invasive testing methods as well as looking for a cure. here is the link http://www.cureceliacdisease.org/

      Reply
  15. 15

    IrishHeart

    Poor babe. You are in Gluten Head hell right now.

    And likely suffering from severe deficiencies. Please, please have your thyroid checked, your Vit D. B-12, FOLATE levels checked, too. These can all make you feel depressed. I know you are smoking weed to keep up your appetite, but truth is, it can make people who are malnourished feel anxious and worsen your depression.

    For the last 5 years, this quote has been up on my fridge:

    “It isn’t for the moment you are struck that you need courage, but for that long uphill climb back to sanity and faith and security.”
    -Anne Morrow Lindbergh

    And my unflinchingly loyal rock of a hubs put this one right under it:

    “You may have to fight a battle more than once to win it”.
    -Margaret Thatcher

    Kiddo,
    There were many days pre-Dx and even for months right after when I said “I’d rather be dead than live like this”. Me. The ridiculously optimistic life-loving me who was so sick from gluten she did not even recognize herself in the mirror anymore.
    That was the severe physical pain and malnutrition talking. I did not really mean it. I fought like hell to come back from the dead. YOU can, too!

    Your family needs you– and taking your own life— will devastate them. They will never get over it. Trust me. I have seen it first hand.

    Get your vitamin levels checked, eat more protein and see a doctor for follow up care. You need some help, hon.

    I hold you in my thoughts. Please let us know how you make out.

    Reply
    1. 15.1

      Chloe

      I keep coming across your comments and love reading them. You have such a wealth of knowledge and first hand experience I wish I could get my family to read. There’s such a history of depression and bowel disorders going back years and years. So much so that I know that when I turn 50 I have a genetic disposition to developing polyps that will need to be lazered off or they’ll kill me. They killed my great Gran and almost my Grandmother. I’m 25 years old currently and I’ve already been through enough with my body from gastroenteritis, developing eating disorders and most recently crippling depression and anxiety.

      I’ve been gluten free 3 years and dairy free 1 year now and my biggest struggle was malabsorption – and it’s crazy how much extra vitamins can improve your mood. This time last year I was struggling to go outside and ending up dropping out of college (I finished a diploma in another college and switched to finish my degree only to discover that this new “prestigious” film school sucked balls, so that didn’t help!)

      I still visit my therapist from time to time for chats about life and “finding my authentic self” but I’m in such a better place. I also can’t relate to any previous suicidal feelings I used to have. I’m looking forward to the future for the first time in years, even though I’ll admit I’m probably a bit more nutty than your average year old. My family are in gluten denial but I’m going to keep on trying and hoping they don’t wreck their bodies too much.

      This has turned into such a rant! Anyway I look forward to reading future comments ^_^

      Slán go fóill

      (Irish) Chloe (from Dublin)

      Reply
  16. 16

    GF Canada

    First of all, every single one of you are my anti-depressants.

    You are not going to let a piece of bread ruin your life.

    You and your family will become masters of gf.

    You understand the mind tricks that gluten plays.

    Those days must ride out the storm.

    I understand your rage. I still want to hit people way too much.
    Mostly doctors. They would be my first choice. SMILE
    The nurses, I wanted to kiss them. Is that lip gloss gf?

    For what its worth, I too have struggled with what you say for about
    20 years. I too have used mmj for celiac. It works excellent for your stomach if you ever poison yourself by mistake. I will also always advocate how marijuana has helped me for years with depression.
    No pill will ever come close.

    Sorry, Dave got me going, lol. My GI Finnish doctor was starting to go in to my sweet little GF buns. He said, “Okay Brent, I’m going to add some air so I can travel farther. Just push and pass some gas.”
    I did not in any way want to have this done. If there was a bus in front of that building that morning, probably would have thrown myself underneath. I couldn’t believe the pain when he would add some air. Laying on my side, white fisted hanging on to the bed rail, sweating and shaking. I starting screaming ” You are in a one-way street, where am I supposed to pass gas, thru my ears? The nurses started to laugh, Mr. GI Joe wasn’t (lol). I was hanging on laughing, screaming, sweating with tears rolling down my face. What became of that? So I could share someday that story.

    To my fellow celiac brother, I refuse to give up, you do the same.

    If your presence doesn’t make a difference, your absence won’t either.

    Reply
  17. 17

    Wendy - PalmTreesGlutenFree

    Also – look into allergy testing. I swear I was starting to feel as if I had been Gluttened by a few other foods. I feel mostly better now, but have my days. I am looking into leaky gut as I am certain I have it ( if ij fact it does exist .. Reading many Drs who don’t believe in it, but i have lost so much faith in Drs who cares what they think). I never had issues with chicken, eggs or potato before and now I do. I am worried that there will be other food allergies in my future and am trying to work on varying my foods as well as making sure I remember to take a digestive enzyme before each meal.

    I am sorry that you are still feeling bad and hope you can find more answers. Definitely make sure all your vitamin levels are more than adequate. There are so many which could be affecting your mood – Vitamin D, the B vitamins, magnesium, etc. and you may need to take large amounts due to not absorbing well.

    Lean on your family – they need you, you need them and you are very much worth it.

    Reply
  18. 18

    The Gluten Dude

    Gosh darn…the best damn community on the internet. Your support for each other simply rocks. Thank you!

    Reply
    1. 18.1

      Sherri

      Thank you Gluten Dude for building and supporting this Community …

      A big heartfelt hug sent out to you and yours …
      :)

      Reply
      1. 18.1.1

        The Gluten Dude

        Thanks Sherri…

        Reply
  19. 19

    The Gluten Dude

    The following came in to my email and I thought I’d share…

    WOW… i just want to hug him… I too know the affects gluten had on my emotions and mood. Took me almost 3 years to start really feeling better and my fibromyalgia has gotten bearable too. I have to share custody with an unfit father(ex) due to my depression because durring our divorce, before I knew about my CD, he used depresion to try to take my kids away from me. I will never forgive my doctor for ignoring my symptoms. Things truly will get better, but it does take time and patience. I have not been more stable emotionally or mood wise in my entire life & have not had to take any meds for depression in over 5 years. So sad, hope he can hang in there

    Reply
  20. 20

    Jennifer

    Powerful, powerful, stuff. I hate that you are suffering so badly.
    I am 11 years into diagnosis after an 8 year search. There is hope. Please don’t give up and thank you for sharing.
    If we all keep talking about it, maybe “they” will get it.
    Hang in there.

    Reply
  21. 21

    MaraKate

    I have a simple trick I learned from a meditation teacher.LOOK UP. physically up, it’s hard to keep a negative thought while looking up. Wierd I know but somedays you need to quiet those negative thoughts.

    Reply
    1. 21.1

      Sherri

      That is a simple technique … thank you for sharing. :)

      Reply
    2. 21.2

      IrishHeart

      Great technique!

      My big sister told me once to … “keep my face to the sky”.

      Same, same. Hard to be sad when you feel the warming sun on your face. Not to mention the Vit D boost.

      Reply
      1. 21.2.1

        Sherri

        I like that too Irish ….

        “Keep our face to the sky”

        very nice – thank you :)

        Reply
    3. 21.3

      Jessica

      I know this was posted in 2012 but thank you!!!!!

      Reply
  22. 22

    NewCeliac

    Hello everyone. I’m the guy that wrote the email to Gluten Dude. I’m overwhelmed by all the comments of support and encouragement. Thank you all for your words. I will take them to heart and definitely will keep looking up. I have an awesome wife that has become a gluten free chef to save my life, a great doctor that understands my disease, and it looks as though mmj will be abundant here in Colorado for a long time. Truly, I don’t know what I would have done without it. I couldn’t eat and it took at least 2-3 months for my taste buds to accept the new flavors and textures. Especially the textures of the food. It soothes the gut very good. I never thought I would use it again (did it in high school), but I never thought I would get a life changing disease either. You do what you have to do I guess. I don’t smoke it though, I use a medical vaporizer. I was approved for an mmj license due to chronic nausea. That’s one way to describe it. I won’t need it once my gut heals completely. Things are getting better everyday. I can still hear Celiac laughing at me as it lurks in the corner, but I’m going to think it’s getting better anyway because of what all of you said. I feel so bad for the people that had those terrible medical exams. Definitely not going to be doing that. I have all the food stuff set now and I have been taking my B vitamins along with pro-biotics, glutathione, amino acids, calcium, and the multi. By the way, our kids (daughter 5, son 2) started showing signs of gluten intolerance and now our whole family is gluten free. Kitchen smells a lot better too. I’m glad I was the one who suffered to discover the disease and not my kids. Makes sense that I passed it to them with all the Irish ancestry stuff with Celiac. My ancestors came from County Cork, Ireland. Baked potatoes and free range buffalo meat have been my go to meal. I come from a family of fighters and survivors, so that is what I will do. Fight and survive. Who would give my kids piggy back rides if I wasn’t here? That’s worth another day every day. Plus there is way too much sun and fresh powder here to think about death. You guys already have me thinking more positive. It’s about 10:00 a.m. I think I’ll go vape my meds, eat a potato, and play with my kids. Peace to all of you and thank you!

    Reply
    1. 22.1

      Sherri

      Thank you so much for joining in and letting us all know how you are doing …

      Continued good and healing vibes sent you way … and thank you … I have been suffering myself lately and a lot of what was said has also started to help my peace of mind …

      So thank you for being brave and sending GD your story … and lots of love sent out to everyone in this fabulous community …

      We may not be able to heal each others bodies but we all can give a little bit to each others souls.

      Bless you all …
      And again Thank you for letting us know how you are doing ~ New Celiac.
      Cheers :)

      Reply
    2. 22.2

      Andrea

      Thank you NewCeliac for the update! If it ever gets that bad again, let us know. And remember that piggy back rides are a necessity for your kids!

      I love this community with all the tips and comforting words and wisdom of experience.
      I will be looking up, turning my face to the sky. =)
      And I now know some tests to avoid at all costs… ewwww!
      My future son-in-law is headed to med school, I wonder if I can get him to be a celiac specialist…

      Reply
      1. 22.2.1

        IrishHeart

        Please do–we NEED them!!

        Reply
    3. 22.3

      IrishHeart

      That’s the spirit, kiddo.

      I will tell you how I view celiac. It is a fire breathing dragon who tried to kill me, but I have run my sword right through his bloody throat.
      I. Win.
      You will beat this monster into submission, too.

      My great Gramma was from Country Clare, so you will know what I mean when I say to you:
      Slainte!

      (For those who do not, we say it as a toast —sounds like “Slawn-cha” and it means “to your Good health!”)

      Reply
    4. 22.4

      Rhonda

      You are a fighter, NC. And you have a loving wife who is, too. Your kids adore you. And you have parents who are so proud of you, and only want you healthy, content, and happy. You are working so hard and are deligent in being gf. Thank God for buffalo burgers! I’m glad you found GD’s blog. What wonderful, caring people! God bless you all for being there each other (and for family members, it helps us understand, too.).
      I love you, son, so much.
      Mom

      Reply
      1. 22.4.1

        The Gluten Dude

        Thank you Rhonda. We all hope NC is hanging tough. There is indeed a light at the end of this gluten-free tunnel. It doesn’t always shine bright, but it’s there.

        Reply
    5. 22.5

      Mary

      Thank you NC for sharing the update. Thank you for having the courage to share your story. I’m positive it will help many others as much as it did me. For me it comes and goes, and only 2 friends I have who know me well, and that I trust will ask “Did you get glutened?” just by how my mood and demeanor sinks (which is usually when I hide away). Still having GI problems on a regular basis as well as other auto-immune conditions, they’ve seen it before I know. I just think I’m having a bad day or am extra tired. It lasts until the gluten gets out of my system which takes a lot longer than Drs saying “3 days and you should be over it. At this point if I ever hear that again the top of my head is gonna blow off and I’m gonna lose it. I can handle the physical pain even though it sucks. For me, the psychological effects are the worst and scariest. I haven’t read it yet but there’s a book out there by Dr. David Perlmutter called Grain Brain. Don’t know much about it but may be worth looking into. You’ve got a great wife, tremendous kids and an awesome Dad! Much love, hope and prayers to you and yours.

      Reply
  23. 23

    Celiac Mindwarp

    NewCeliac
    It is great you have found the amazing support of the celiac community. These guys and girls are fantastic.

    Hats off to you for having the guts to say how bad it can get, and for seeing how good it can be.

    Forget all that horrible gf processed food – if we could bottle what happens here on GDs blog we’d be made.

    Love hugs and good wishes for healing and happiness

    Reply
  24. 24

    Chelse

    Don’t lose hope! As previous comments noted, many of us have experienced the same struggle. Depression is difficult because it is yet another “unseen” effect of CD. One major way I can tell if I’ve been glutened is if I begin to sink back into depression. I’m only 23, and I haven’t had a whole lot of experience with CD as some of these other people but I can say with confidence that I became much better once I was diagnosed and went gluten free and I have every confidence that you will do. Prayers with you!
    P.S. There are people in this community with fantastic knowledge that has helped me a lot and I’ve only been reading the Dude’s blog for a couple weeks. It’s an awesome place :)

    Reply
  25. 25

    GF Canada

    Right on my man. Every item on my wish list for you, you have covered. I like how you decribe Celiac laughing at you. Depression will do the same. Just remind yourself you can laugh too and have it pinned in the corner. Now who is in control.

    Being on here reading thru everyone’s experiences has brought
    back so many bad memories. It also has reminded me how I used
    my twisted sarcastic sense of humor sometimes to make another morning appear.

    My GI procedure, lets just say I took one for the team. Has a small camera on end and slowly goes up towards your heart and back out. Takes about 10 minutes. You have to fast before. In all fairness, GI Joe had a suction device also that could take air out.
    Thats what blew my mind. Instant pain, instantly gone…x50.
    Of course after I blurted out the one way street thing, suction was working alot less now. They all knew I was done with their bullshit
    and not one more person is to touch me. No pills, probes, procedures…DONE! That was 1990, I was 23 yrs old, unknown at that time celiac for 13 yrs. I thought of something else this morning, my first seizure was Aug. 1988. My first job on the radio in a small town. I ate hotdogs around 10pm and had the most bizarre seizure. Sweating, screaming, extreme body rush up and down around 6am. My delay to a tee to this day, is always around 8hrs and starts with major stomach sounds. GD would like to be in there for the show. IMAX 3-D. All shows cancelled on this end. “You Go Now!”

    This stubborn, grumpy, jaded man walks alone. I should walk to Colorado. Snow, sunshine, fresh-air, gf food, vap some meds. lol
    Thanks for posting back. The only reason I bought a computer just 6-7 years ago was I had become the walking dead. I told doctors for almost 10 years that I’m sure it’s wheat. Once online and I knew bread days are over. That 8 hour delay fooled me for years. Peace

    P.S. Went on many more years eating gluten, I never really had a
    seizure like that again for almost 20 years. I’ve had 100-150 small
    ones. Almost like you get the chills and then start to shake for 2-3
    minutes. I have had 4 major ones from 2008-2010. Every one of those 4 seizures were all from unknown gluten going in. I can see why. My body is so happy finally gf after so many years and then some marinated meat with the third ingredient being bread crumbs. My DH, joint pain, raging mood, extreme fatigue…wow.

    For all we went thru over the years, it still blows my mind what
    a piece of bread did to us. Gotta go..walking to Colorado

    Reply
    1. 25.1

      pat

      Hi there, I was just reading your posts on this blog and your symptoms sound exactly like mine.I was wondering if you have posted anywhere else so that I might get a better understanding of what you have been going thru. Thanks.Pat.

      Reply
  26. 26

    stella

    Now, a lot of people don’t know this, but about 8% of all people with celiac disease can’t stand even the slightest trace of gluten. And now I’m not just talking cross-contamination stuff.
    I’m one of them. I live in Sweden, which is a very developed country medically, but with a huge tare between doctors. You see, Sweden is a wheat country, it’s something that “we” pride ourselves in (not me of course). What the swedish industry do, cheered on by most of the doctors, is that because the gluten protein is washable they wash it out of the wheat and then they, imagine this, put the “gluten free wheat” in gluten free products. Which of course, if you’re familiar with basic logic, isn’t completely gluten free. So in sweden the law says that you can serve gluten free products that still contains about 15-20 ppm gluten. Crazy wheat country. And now, the rest of Europe is hoping onboard. Countries such as Italy, Finland and France- where the previous regulations were “just a 100% gluten free products can be labelled as gluten free” , are now joining this crazy new way of thinking, and I’ll bet you anything not one of the people in charge of this decision are celiac patients.. It’s like having just men deciding on womens rights questions. no. just no. So the best thing to do, as I’ve myself done, just skip the gluten free products all together. I use clean stuff like buckwheat or millet when I bake. Back to nature.

    Reply
    1. 26.1

      Donna

      Stella…I am one of those people that can’t stand the slightest trace of gluten. It gets worse and worse the longer I am gluten free. What I mean is that I get sicker each time I am glutened than the time before! It really sucks and of course I have to be HYPER-VIGILANT about everything that goes in my mouth. Not only do I read the ingredients, but the product is then passed to my husband to read and THEN it is passed to my son to read!!! It really is kind of comical, but they don’t want me to get sick. They know how horrible being glutened is for me!!!!!! On the Swedish note…it must REALLY suck to live there and I’m sorry that you have to go through all that BS regarding gluten!!!!! Guten free hugs coming your way Stella!!!!!

      Reply
    2. 26.2

      The Gluten Dude

      “So the best thing to do, as I’ve myself done, just skip the gluten free products all together.”

      Yes, yes, yes.

      And so much for visiting Europe any time soon.

      Reply
      1. 26.2.1

        stella

        Donna, it’s the same for me. I also always reread stuff, again and again – just in case they’ve changed the product. It is comic, but what are you gonna do. The thing that bums me out the most is that I love food, I love travelling – and what better way is there to experience different countries than through the food?
        and gluten dude, the upside about Sweden is that a lot of people here do know about gluten and they are very careful when handling food to avoid cross contamination. It’s also an extremely clean and healthy country generally food vise so if you ever want to visit europe, I would most def suggest spending a few days in Sweden. I tend to bash it a lot, but it is a great country, on many levels. only downside, the stupid politicans/doctors. But hey, I’ve heard that most doctors in asian countries doesn’t even have a clue as to what celiac disease is. so it’s all relative.

        Reply
    3. 26.3

      Alex Colombo

      Wow!! does this still holds in EU ???? I am about to move from USA to london.. ?

      big hug

      Reply
  27. 27

    GF Canada

    Thankyou Phyllis A. Balch CNC

    The proteins in wheat and milk are psychoactive-they act in much
    the same way as opiate drugs do. In people with healthy intestines,
    the psychoactive proteins are broken down into amino acids, but in
    people with celiac disease, they pass through the intestine in their
    psychoactive form. For this reason, celiac disease is a major factor
    in ADD with hyperactivity, bipolar, depression, panic attacks and
    schizophrenia. The association between celiac and schizophrenia
    is especially strong, with dramatic remissions sometimes occurring
    after 2 or 3 months on a gluten-restricted diet.

    Reply
    1. 27.1

      Donna

      WOW GF Canada…that is really fascinating and information that I had never read before. I have major anxiety…on a couple of different meds for that…and depression! This is something I am going to HAVE to study up on because I have been having major problems with milk. I switched to lactose free milk, but I have the same problems. So perhaps it IS the casein in the milk products!!!!!!! Thanks so much for that info!!!!!

      Reply
  28. 28

    Kathie

    If you would like to read more about the science behind what GF Canada was talking about, the gut-pschology connection…. read about the GAPS diet…Gut and Psychology Syndrome diet, by Dr. Natasha McBride. Here’s a link to get you started but I recommend reading the book, very enlightening

    http://www.gaps.me/preview/?page_id=20

    Taking probiotics is really important to heal your gut after having glutens…after taking really good probiotics for about a year,the duration of my symptoms after being glutened has reduced by about half.

    Reply
  29. 29

    Sarah

    I’ve been gluten free since the end of September and i have had no changes in my symptoms whatsoever my diet it completely gluten free we even got a new toaster and i don’t allow and gluten in the house , the doctor said its some kind of unhealing celiac condition that neads a boost to heal i so now im on a sort of mild steroid but for some reason i dont not feel it is going to change anything …i guess its to soon to tell .

    Being a celaic has completely destroyed my life my hair started falling out (its growing back now but its still thin ) i got so depressed i couldnt go into school i felt so self concious about my thin hair and my bloated tummy now im out of school and have to start back fresh next year.MY knees have also started to swell for the past month its horrible if i do excersise they get even worse.

    For the past few days i havent been able to leave the house i look like ima few months pregnant my knees look fat and my hair has quite a few bad hairdays seeing as its still thin. i don’t know what to do , nobody seems to understand how horrible this is im only 16 and i feel like my life is falling apart .

    Reply
    1. 29.1

      Gluten Dude

      Sorry to hear about your struggles. I know it really sucks…but try to be patient. If you eating very healthy and are completely gluten-free, you should begin to heal. It can take more time for some people. It took me over a year. Hang tough!

      Reply
  30. 30

    Darlena

    NewCeliac – I’m so sorry this happened to you. Me, us, all of us, have our own stories of pain and isolation that celiac has caused but it seems like you got an extra helping of the celiac-monster. Warm and loving thoughts from the Ozarks. Take care of yourself.

    Reply
  31. 31

    Matt

    I just got glutened. Literally, an hour ago. I’m staying with new people who rolled their eyes when I told them I am so sensitive that flour in the air from baking can cause a reaction. I asked them to avoid baking and batters while I was staying. They wanted to test if my reaction was genuine. So, while I was sitting adjacent to the kitchen they began to prepare dinner. They said it was ‘just fish’ in the oven, and waited, watching me read the newspaper…. I knew something was up, but pushed it out of my mind – I always try to stay on the bright-side afterall. After a few minutes i started to get dizzy. Their eyes widened when I asked ‘so, what is on the fish?’ They told me batter…. Now I’m in the basement room with a headache, dizzy, and no appetite. They claim it is an innocent mistake, but we discussed this. Now they are annoyed that I am making ‘too big of a deal’ out of it by quarantining.

    I guess what I’m trying to say is – we’ve all been there. I’m glad you shared your story – it helped me. Things will get better.

    Warmly,
    Matt

    Reply
    1. 31.1

      Gluten Dude

      Who does stuff like this??? Agrhhh!!!!

      Reply
    2. 31.2

      Erin P

      wow…. unbelievable… people are so ignorant some times. I remember trying to explain to folks my own sensitivity. I had similar responses. I think people just thought I was making it up. I would give folks a list of ingredients that I COULDN’T have, so they bought me a GF cupcake, and ignored the other twenty ingredients I could not have. (just one of the many pitfalls to being a celiac’s- your gut get’s so damaged you have to eliminate virtually everything in order to recover) anyways… tired of the stigma. Tired of the system. I just wish things would change..

      Reply
  32. 32

    Sujan

    This forum was very helpful. I feel so misunderstood because my family nor my friends understand me at all; I’m on my own. I got tested for celiac disease but it came back negative. However, I highly suspect that I have CD because my small intestine is inflamed (I got an upper endoscopy test) and no matter how hard I try, I DO NOT lose weight. I eat very healthy and exercise. There were even times when I ate less than 1,000 calories a day, but I always weighed 145 pounds and it wouldn’t budge no matter what I did. People keep thinking I’m having neurological and digestive issues because I’m eating unhealthy or it’s something that I’m doing wrong. I try so very hard to be healthy and fit and it seems like it’s just all going down the drain and it’s going unrecognized. I have anxiety and depression as well as psychotic issues. I also have digestive and neurological symptoms as well and lactose intolerance. Somebody, please help me. I’ve been getting gluten free foods for over 4 weeks but I still have symptoms and my weight isn’t dropping. I’m thinking of only eating tuna, chicken salmon and veggies with rice (as it is my staple food) for a few weeks and slowly incorporating more foods to see how I react to it. Also, My GI doctor told me to gluten free for 6-8 weeks but if my symptoms don’t go away, should I ask if I can get retested for CD?

    Reply
    1. 32.1

      Chloe

      Hi Sujan, I have had similiar problems with depression and really and anxiety attacks. It wasn’t until it started seriously affecting my day to day activities that a booked myself into a clinical pyschotherapist for Cognitive behavior Therapy that things started to feel normal again. I only figured out my gluten intolerence by chance, when I was dating a health nut who was talking about Macrobiotic diets. My Doctor is absolutely useless, and when I started getting really sick a few years ago I got tests for everything but coeliac. I started eliminating gluten out of my diet and after about a year and a half I was feeling more normal. I also found that dairy was affecting me badly so I eliminated this too. Eventually my Doctor sent me for a blood test to see if they could detect gluten intolerance but since I’m already on a gf diet it was kind of useless and I’m not willing to risk my health any further for a biopsy.

      I’m kind of relieved that other people are mentioning that they are struggling to loose weight as I’ve had this problem. In my teens I developed a bad relationship with food and struggled with eating disorders (Anorexia followed by Bulemia) on top of symptoms. I’m 25 now, and I’m just trying to focus on my health and being happy so I try to not let it bother me too much. It helps that I have a really supportive boyfriend, as so many people are misinformed about CD. The amount of times I’ve been asked ‘Does that mean you can’t eat meat?’ and I’ve learned the hard way to think very hard about who I trust in cooking food for me. I’ve also learned to be ruthlessly unapologetic about my dietary needs. Even though my own Grandmother appears to have CD symptoms herself, she still thought at first I was “going through a phase”.

      I personally think that there is a connection between CD and other ailments that other coeliac’s have spoken to me about. A coeliac friend of mine also started experiencing really debilitating panic attacks, much like the ones I started having. Something that I found really weird is that he started having really bad sinus infections in the same ear as I did almost constantly (my “funny ear” as I call it). Now that might be pure co-incidence, but most coeliac’s I have met have something else going on in their bodies. I really think medical practitioners need to do more research into the condition, and that’s overlooking the frightening number of people who have coeliac disease unaware or undiagnosed.

      Sorry if I’m a little late on the bandwagon replying, I’ve only recently found this site but felt like I had to respond to your post. (Also, I’m Irish, so ignore non-Americanised spelling of things! :) )

      But back to my original point about therapy (if you haven’t already gone) – I know there can be a lot of stigma about seeing a therapist (and cost sadly), but if you’re feeling unhappy and like you’re not really living then what have you got to loose?

      It may take a while, but I hope you start feeling better with your gf diet. I once thought I couldn’t live without gluteny bread, but three years later and I’m totally satisfied with gf options! (I’m also a much better cook!)

      Wish you all the best,

      Chloe x

      PS: Awesome site, Gluten dude! Hugely supportive resource and often makes me feel better on my crappy days!

      Reply
  33. 33

    Cat

    Actually if you decide to go gluten free before getting a proper Celiac Diagnosis, you are likely to get negative results…docs did this to my daughter as well. We have Celiac running through our entire family and it was likely for her as well. Ask your doctor if he/she did an IgA test on you. If not, you need that done. Often times people with Celiac and very low IgA come back negative but are actually Celiac…via biopsy. If all else fails and you just keep getting sick, for me, I’d ultimately go gluten free and casien free. But that’s completely your decision considering you’ll never get the Celiac diagnosis. Another option might be is that I’ve heard that with some genetic testing, often times they can at least find out if you’ve got the genes. If so, at least you’ll have some kind of answer.

    Otherwise, maybe someone else can help on this site. Wish I could be more helpful.

    The goal for all of us is to be healthy. Unfortunately, with the testing that’s out there, it’s a hard one sometimes.

    Reply
  34. 34

    MerLow

    Sadly for my own brother it was too late. l lost my brother to suicide. I will never know if my brother had celiac disease, but when I had the symptoms of celiac disease 5 years after his death, I could not help but think of him. I recall his complaints about stomach issues and the drastic change in him the years before he died. I know in my heart that he was also celiac, but back then we had no idea. Taking antidepressants was not going to cure him. Two years before I was diagnosed with celiac disease, I too was prescribed antidepressants for my symptoms of fatigue, sleepiness, and low energy. I was not even given a blood test. After being so anemic I required iron transfusions, I finally got the diagnoses of celiac disease. Since going on a strict gluten free diet, I have not needed any antidepressants. Oddly, when I have accidentally ingested gluten, the depressed mood is my most dreaded symptom. I hate how it robs me of myself and my thoughts always lead back to my brother and how different our lives would have been had he gotten the medical attention he needed.

    p.s. This is my absolute favorite blog EVER. I will not rest til I have gone through every single post. Thank you Gluten Dude for speaking from the heart about the good, the bad and the ugly.

    Reply
    1. 34.1

      CaliSparrow

      I agree with Stacy. It can be a painful journey. I’m sorry for your loss. Wellness will return in it’s time.

      Peace,

      Cali

      Reply
    2. 34.2

      Erin P

      I know this an old post, but I wanted to comment, because this seems to be a prevalent theme in my life. I’m witnessing many around me who are suicidal, and I often think of my own suicidal nature when I’ve been glutened. My friend who was bipolar, recently went on the diet I am currently on, more paleoish than anything, and not only did she recover, but when she did actually eat a bagel, she called me up complaining she wanted to slit her wrists, and couldn’t figure out why. It’s powerful shit! A terrible symptom, with such a simple cure, if Dr’s would get there heads out of their asses!

      Sorry about your brother… :( It’s unfortunate it had to happen that way, but hopefully the remaining celiac society CAN make a difference. My deepest condolences.

      Reply
  35. 35

    Stacy

    I’m so sorry for your loss…if he indeed had celiac I know first hand the damage it can do! It’s a long road to recovery and it seems more often then not the tunnel can be very dark.Tired of being tired…agree this site is a god send…I pray you have better days ahead of you.
    Stacy

    Reply
  36. 36

    Mary

    I’m going to say it again…Thank God I found this site. I have felt so incredibly alone…and live alone. Thank you Gluten Dude for posting the vast area of subjects…and to this community. You all just changed one middle-aged woman’s life and now I have hope and courage (as well as had a few laughs) that I will be around for my adult kids, their weddings and eventually grandchildren.

    Reply
  37. 37

    Jamie Pomana

    This could be my story, except that I lost my Marriage, lost my job, lost my insurance, am flat broke with medical bills from all the stuff that has come from having untreated Celiac disease. The only reason I am not homeless is because my of my Dad. But he cant pay for my care, and he is on a fixed budget and can’t afford the expense that comes with a Gluten free diet. He doesn’t understand what this all means he is 76 and I can’t explain how bad it is. I was 180 lbs am now 135 if I am lucky, and you can guess how lucky I feel right now. Every day that I wake up is a disappointment.

    I need to go to Social Services for help with food costs and medical coverage. I have never been on any kind of assistance and I am completely confused, and I am not a dumb person. I went to my Dr yesterday because the dehydration was out of control. My first visit after my insurance was canceled. I have very good friends who work for my Dr. I had to get on a payment schedule and when my friend who I haven’t seen in a few months came over for a hug I broke down, 44 year old man bawling like a baby in his Dr’s office. I am completely overwhelmed and don’t know how much more I can take. I am a Christian, who has always believed in morals so even though I want to die I cant.

    Reply
    1. 37.1

      Gluten Dude

      Hang in there my friend. Good things happen to those who persevere. Sending you all the strength in the world.

      Reply
  38. 38

    Lil

    It is actually extremely comforting to read this.

    Starting a few years ago something become off but I couldn’t quite pin it. My digestive system was starting to malfunction more, I literally had NO energy ever, and then starting a year ago episodes of anxiety and depression. Before this, I’m normally a very positive and happy person and could not possibly understand why this was happening. I always came to my own conclusions that it was either stress or the weather but starting six months ago my anxiety went out of control (I couldn’t even sit in a 75 minute lecture without thinking I was about to loose my mind and scream my head off) and I’ve been having severe depression with intrusive constant thoughts of suicide. That was when I decided to finally see the doctors who all concluded THAT IT WAS STRESS AND WOULD GO AWAY/ JUST TAKE PROBIOTICS AND DON’T DRINK COFFEE. But I knew that something was severely wrong when over the last 4 months I suddenly started loosing weight rapidly despite the desperate amounts of food I was eating. (Unfortunately for me, I thought carb foods would help and started eating large amounts of pasta and cheeseburgers which triggered me into worse symptoms) My body ,especially fingers and toes, would become icy cold. I also knew it couldn’t be stress because after the school semester finished my health was still rapidly declining even though I had no stress and all the time in the world. A friend of mine (a biologist) noticed me suddenly looking frail and unhealthily skinny suggested celiacs. I immediately cut out gluten and although its only been 3 days my brain fog disappeared. I wanted to cry out of happiness. For the most part my severe depression has lifted, although I am still plagued with suicidal thoughts and anxiety. But then again, its only been 3 days. I am not officially diagnosed as having celiacs but having gone to so many doctors who are a bunch of quacks and EXTREMELY expensive I don’t even want too. Plus, the treatment doesn’t require a prescription so I am going to try this without those ridiculous fees. When I read your article though, it just comforted me to know that suicide is not the answer. Although I have no intentions of carrying through with my thoughts, the constant thought of it involuntarily just scared everything inside of me and confused my because I really didn’t know why this was happening. But just to know that there is hope… for a brighter future makes the world a different place.

    Reply
    1. 38.1

      Gluten Dude

      Hope is a good thing Lil. Hang in there.

      Reply
  39. 39

    Lonely coeliac

    I’ve in my first year after diagnosis of CD and my depression has gotten worse. I go to sleep most nights wishing I didn’t have to wake up, or wake up wishing I hadn’t made it to another day. I know CD isn’t life threatening and can be treated with a GF diet, but I seem to have one autoimmune disease after another. Life is so hard and I just don’t see a way out. What can I do?

    Reply
  40. 40

    Jes

    Thank you. My boyfriend is gluten sensitive, too. His symptoms don’t seem to be as severe as yours, but he suffers from depression because of gluten intolerance. Growing up in a home that was always health conscious and 90% gluten free already, I understood the dangers of how it effects our bodes and mental state to a degree, but I never really know just how sad he is sometimes. I’m good at “fixing things” and just couldn’t understand how he couldn’t understand me when I tried to explaining to him it was his diet. Not spiritual, not emotional, but merely his diet. I have a better understanding of just how badly he suffers now. Unbelievably strong. I think I ever gained a whole new outlook on determination! As of two weeks ago I finally got through to him and he went hard core gluten free. At first he did it just to spite me (Great relationship, right. Ha.), but now he sees results and is happier. Says he wakes up feeling optimistic again. I truly believe God has supplied all that we will need to heal our bodies. Modern medicine has its place, but how comforting to know we have such a great God to know everything we need to support us, cleanse us, keep us strong, and controlled. Amen for marijuana for this reason, too! Every time I think I know that’s plants limits, it surpasses them and amazes me. Anyway, you’re awesome. Hang in there, you can do this. Praying for you.

    Reply
  41. 41

    Lovemybaby

    My 14year old died by suicide last year. He had a brain tumor he fought thru snd was blind for two years. Same time he was blind he was dx’d with CD. He followed a gluten free diet and I brought him back for yearly endoscopies. Then we were told he didn’t have CD. So started a regular diet. Then my son thought he was getting worse with lactose. ..he was never tested. .they said just get off milk. He wouldnhabe food stuck in his esophagus.so dr gave him steroid inhalor. Did nothing. He lived with severe abdominal pain. .I would make warm heat packs for his tummy. Two mont he before hentook his life henhad an episode of absolute pain..was screaming say ing I can’t take this anymore. I feel so gulity now knowing this wasnhis cry for help. After reading this blog he had all these symptoms. I bought gluted free shampoo..itchy scalp resolbed. Gluten fee tootho aste. My kitchen was color coordinated for gluten free items. We tried.so hard but he must habe had a bad attack that nihht and no one was home. I found his beautiful body hangimg in his closet. He didn’t deserbe this disease or pain..the tumor was enough but he would say I would rather have a brain tumor then CF. I didn’t know how bad it could be pyscholgically until I saw this blog. He left no note but I know the pain he could get. The doctors were neber supportibe…just go on diet. I had to ask for testing fo vitamin. .they lookednat me like I was crazy. My two older sons lost theit best friend and my heart is shattered. I blame CD and lack of education. My son was always happy (I guess on the outside) & lobed life. He had to be in so much pain. He had his life planned.and celiac took it away

    Reply
  42. 42

    bri

    I have celiac and Was diagnosed at age 13. I was 60 pounds and my growth was stunted. I learned the really hard way what not to eat and what to eat. My relatives would come to be holding some pizza then be like “Oh sorry” and smile sadly. ” So what can you eat” was a question I was asked frequently. And the pain oh boy do I know it let just say it was not fun. Every thing under the sun went wrong with. After a year I was 70 pounds and things were looking up. I am sensitive to beef and milk. My doctors thought gluten free would help but no way. I sure didn’t. After about two months from then I had terrible pain in my intestines. I thought I was dying I kid you not. I spent about an hour and a half screaming uncontrollably in extreme pain. My mom nearly took me to the emergency room on several occasions. The doctors tested me for ovarian cysts, more inflammation in my gut ovarian knots you name it. Lyme disease mono lupus ( my mom has it) was tested ritually every three months. I remember telling my friends to slow down on orange juice or they’ll vomit. I got the weirdest looks and I realized how different I am to them. Well after my diagnosis came new meds yay!

    Reply
  43. 43

    Audrey

    Hi, Just wanted to say that I also benefit greatly from using marijuana for my Celiac symptoms. My stools are normal and no more pain!!! This came from using a very small amount before dinner. Noticed results immediately. Wish researchers would really look hard at this because I have no doubt there are many people out there would would benefit. Never tried the stuff till the age of 48, but did so at the urging of a good friend who suffered from IBS. Makes me sick to think of all those years I suffered, but am very grateful those days are gone.

    Reply
    1. 43.1

      Dylan

      Hello Audrey, I realize that the original post is old, but your comment is new, and I’d like to share some anecdotal stuff about me. I haven’t been diagnosed Celiac, I got an inconclusive result 5 years ago, after I stopped eating gluten for a month before the test. I have just recently begun thinking about it again, and I get antibody tested tomorrow, I’ve been going gluten heavy almost every meal this past week and a half and I feel like death. But aside from that one of the main reasons these past few years I haven’t gone to a doc is because I haven’t seen as much diahhrea symptoms as others do, but I am starting to realize it is from me smoking marijuana very heavily. I usually don’t go more than 12 hours without a smoke, it helps me feel better (I already have type 1 diabetes, feel like shit constantly) but it also stops my shits. I haven’t smoked marijuana in about a day now, and here I am on the toilet for the 4th time this morning typing this. When I smoke my movements are solid, quick, and easy, without they’re dust like, painful, and difficult. I’m in college so it isn’t easy to talk to my family about this stuff, especially marijuana, but I’m going to have to do so here soon in order to fight for my health.

      But I go to the doc monday, and I’m about 95% sure I have Celiac. I have a terrible red scaly dry rash on my face that doesn’t go away, itchy spots on my legs, thighs, and rear, I’m depressed and tired, lethargic to the point I have no clean socks left to wear, and getting ready for school and work each day is an exhausting battle, and I miss days because I feel so bad.

      I really want to take part in research for MMJ and celiac, and because I have a biochemistry background I have that opportunity, and with legalization in Colorado and Washington, there’s plenty of openings. I think CBD, and other marijuana extracts, could be, and should be used by people with celiac who have harsh stools.

      Reply
    2. 43.2

      Audrey

      Hi again! Just wanted to update everyone since its been a few years. I’ve been feeling great. Although I still use marajuana for occasional pain, I’ve found i need it less and less. It definitely helped with anxiety too. Seems anxiety is caused by malabsorption of important vitamins and minerals. Marajuana helps with anxiety but not depression. Long story short, last year I started including three important minerals and high end liquid vitamins and liquid minerals. First the most dramatic results came from a natural mineral no longer in our soil called lithium orotate. NOT the same lithium used for serious mental imbalance called lithium carbonate. That’s dangerous shit. The other two are gabatrol, and 5-HTP. If you go to YouTube, look those three up. Lots of info there but the best explainations came from John Gray…. The guy who wrote the book Men are from Mars, Women are from Venus. All these products are safe enough to give to children and have not caused any digestive issues. It’s nice to get rid of anxiety, but to go beyond that and actually feel consistently happy…… Nothing beats it. Nothing. It gave me the desire to get things done. No more need for naps and I actually enjoy being around people again. Eating real food and eliminating processed food and sugar helped even more. Couldn’t and wouldn’t have wanted to do this without those supplements. In the last year, I’ve only had two bad stomach issues because I tested my limits too far. I’d never recommend these if I wasn’t 100% sure they would help. If you try it, make sure you get the brand of lithium orotate John gray is promoting. It’s the only one that seems to consistently work and no stomach issues. All 3 products can be bought on eBay much cheaper than his site. Lithium orotate costs about 18 bucks for a 3 month supply. Gabatrol is about 45 bucks but is only used a few days a week. Pricey but OMG you will feel results within an hour. 5-htp….. I use 100 mg at bedtime. All 3 help your body make its own hormones. For me it’s a cure, not a band aid like SSRI’s. Please give these a try. You’ll need the marajuana less and less over time. I’ve shared this with quite a few people. Every single one had a positive experience. I’m not associated with any company but damn! This was too good not to share. Hope this helps someone. If you try it, let me know how it goes. I get off knowing I helped someone. Lol. Any questions, please let me know. I’d be more than happy to help.

      Reply
  44. 44

    Annette

    I have had to adjust with it for over 4 years and several trips to the er. Here is what I am wondering, “where do you work at?” My body reacts by just me smell of anything with gluten in it. Adjusting to this life is and continues to be a struggle.

    Reply
  45. 45

    Cindy H

    I Just had my blood test for celiacs after dealing with multiple symptoms my whole life. My family dr told me the diarrhea I have is caused by stress and that I was a hypochondriac after complaining about my symptoms for several years. I switched drs and my new dr had me tested for celiacs after a 1 hour visit. I have suffered from depression, anxiety and even felt suicidal at times, since I was a teenager. I also suffered from severe menstrual cramps and endometriosis until I was forced to have a hysterectomy at the age of 36, which I learned is also common in celiac women. I suffer from hashimotos disease(hypothyroidism), dermititis, severe anemia, osteoporosis, arthritis, constant fatigue, lactose intolerance, and my weight bounces up and down like a yo yo. I’ve also been diagnosed with IBS, and told I have a bad gall bladder because of diarrhea I have now lived with for 5 years. I find myself in a state of depression, not because I’m faced with this diagnosis and diet but because I trusted my dr and he failed me for so long allowing this to continue for so long and worsen to this point. I just hope the diet can still work after this many years of damage. I’m really tired of being miserable.

    Reply
  46. 46

    Rose

    HOW MY DAUGHTER ANXIETY WAS CURED WITH CANNABIS OIL

    My daughter Nadia has been suffering from ANXIETY since childhood and we have tried many medications to treat this anxiety and we have spent a lot of money on different drugs but it was not helping at all and it was getting worse. we have tried everything including allopatic medicine but rather not working. This was really affecting the family and work. I saw a post on the internet about cannabis oil and its effective usage for curing anxiety, i was desperate to try anything to help my daughter to get well. We bought the cannabis oil by writing to nationalcancerinstitute@aol.com and we were instructed on how to use the cannabis oil for treating the anxiety. We started using this cannabis oil for treatment and began to see good result and improvement in her health status and after using the cannabis oil for the stipulated time, the doctor confirmed that my daughter’s anxiety was gone and she is permanently free from anxiety. Happiness has finally returned to the family.

    Reply
  47. 47

    brent

    Reading these comments made me feel better today. I too have coeliac and its the pits. I always adhere to gluten free diet. The thought of getting sick is enough to put me off. Feeling down about it today, but they come and go. I hang in there hopeing for a cure in the future.

    Reply
  48. 48

    Jan-Erik Swart

    Thank you for all the info! I am a 52 year old male with type 1 Diabetes since 1980. I also have Celiac Disease and certain Crohn’s Disease symptoms, such as severe skin rashes, severe abdominal pain, insomnia, weight gain, and worst of all, a depressed state which is severely limiting my dynamic, workaholic lyfestyle. I use insulin, Cilift (antidepressant) and Omez (for a faulty stomach valve/leaky gut) but am reaching the point that I feel like a total failure, even though I am successful in my field. Because I live in South Africa, doctors have very little experience of my glutin-free daily struggle. So-called glutin-free meals in restaurants often make me extremely ill. My internist and surgeon suggest I lead a stress-free life, but as a teacher, this is impossible. There is no gastro-enterologist in my area, and I do not know whom to consult to help me with clinical, seasonal or glutin-related depression.

    Reply
  49. 49

    dee

    it’s been 4 years since this post, i would like to know how this young man is doing?

    Reply

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