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41 Comments

  1. 1

    Sue in Alberta

    To Our Fellow Celiac,

    Welcome to a place where you can be safe to express your thoughts and feelings with other people who can truly understand.
    There is support out here for you from people who have been gravely ill and completely misunderstood as you are. There is good health in your future, please believe that.
    GD, you’re missed when you’re not “here.” This spot provides a soft landing for so many people and I’m glad when you see just what a difference it makes.
    Hope and compassion go a long way.

    Reply
  2. 2

    Jersey Girl

    Whoyah, Welcome to a great blog-

    There is alot of great advice, alot of awesome people and best of all is the most caring guy around, Gluten Dude. He is very modest about the success of his blog. Dude, you rock, keep moving, keep blogging and keep changing lives.

    Much love-
    Jersey Girl

    ____________________________________________________
    “Remember, Red. Hope is a good thing, maybe the best of things, and no good thing ever dies. I will be hoping that this letter finds you, and finds you well.” Your friend, Andy.

    Shawshank Redemption

    Reply
  3. 3

    Claudette

    Yes, welcome to the family – and I am sure IrishHeart will also welcome you in when she reads this, as your story is similar to hers. We are thankful that you found us here, and while sometimes we scrap like any large extended family, we are united around one thing – the process of healing, physical and psychological, that comes along with having celiac or non-celiac gluten intolerance. You are only beginning your journey and the process may seem slow… but we are here to tell you that healing can and eventually does happen. Hang in there!

    Reply
  4. 4

    Kristin in CA

    As a reminder to you, Gluten Dude – you are MUCH appreciated in our celiac community even if some of us may not say it as often as we should. We need someone to speak out on our behalf and to blog about all those things we’re all thinking, but don’t say.

    You have touched so many lives and you have a way of making anyone who finds your blog to feel so understood and a part of a welcoming and supportive community.

    That being said, we Celiacs more than understand fatigue, frustration, and lack of motivation – so rest, relax… drink a GF beer….. and please keep blogging, Dude!! :)

    Reply
  5. 5

    Phyllis712

    Welcome to the BEST gluten free blog on the Internet! Dude keeps us all sane :) (thank you, Dude!)

    Reply
  6. 6

    Camille

    You are going to laugh more and more as you continue to read this blog. The people are truly uplifting and supportive. This community has made my journey so MUCH BETTER!!! Welcome, welcome! :)

    Gluten Dude – Take a break – but don’t stop!! It is only going to grow… You found one of your gifts (the ability to blog) – what a blessing to us all. :)

    Reply
  7. 7

    Lisa

    Gluten Dude…….your blog has given me so much info when I started on this gluten-free journey a year and a half ago. It’s been rough, but with others sharing what they go through, and how they deal with it, it has made that road easier! Thank you for always giving us information, sharing your experiences, and generally helping us all feel that we aren’t crazy!!! I appreciate you, Dude!!! Keep up the good work.

    Reply
  8. 8

    Drew Hampshire

    To our Fellow Celiac-welcome! So glad the puzzle pieces finally came together and your new life starts over-finally hope amongst the symptoms. I identify with some of what you’ve gone through, but I’m SO glad it all came together for you. If you can, and only if you are comfortable to, once you are feeling better, could you say more about the shaking you experienced? Heres why I ask; three to four times a year I start to feel really weak and run down, I get a headache and then shakes that almost lock my body up. Then I get a headache, I sweat that away, then live the next two days with no energy, trying to recover. I’ve been checked for Malaria (lived in China briefly in the early 90’s) I’ve been to urgent care when the symptoms were occuring, and I’ve changed doctors in the hopes of getting these FOUO’s (fevers of unknown origin) diagnosed. All to no avail. Just the other day I too connected the dots. Another blog pointed out an interviewee’s anemia he found after attempting to give blood, which I too have been diagnosed with. My wife has suspected Celiac’s or at least NCGI for some time, but now with so many things coming together, it seems to be on target. I have not suffered to you extent, and i hope my request is not impolite. In any case, so very glad you have some answers and get a fresh start for you and your family!!! Thanks for writing the GD, and GD, thanks so much for blogging!

    Reply
  9. 9

    Jennifer

    Thanks for coming back to us Dude. I missed reading your posts. You help so many people. I come here every day just to check and see if you wrote something witty, clever, funny, inspiring etc. Just thought you should know.

    Reply
  10. 10

    Jess

    Thank you, Gluten Dude, for everything you do! I have non-celiac gluten intolerance (positive blood test, lots and lots of bad symptoms, and a negative biopsy) and I am so incredibly grateful for all of the information and personal observations you share. I’m really just beginning to navigate this whole new world and your blog is an enormous help. You really put your heart and soul into everything you do here and it shows.

    Reply
  11. 11

    Gemini

    To the woman who wrote that letter to GD….I was only 5 pounds heavier than you when I was diagnosed and I had the SAME experience. I do not trust doctors at all after my miserable experience trying to get diagnosed. BUT…..it has been 8 years gf for me and I am healthier now than I have ever been. I weigh 112 pounds now and am healed. If I can do it, you can too. It will take awhile to recover but you aren’t going anywhere but to Better-ville!
    Hang in there and don’t give up hope. You will recover!

    Many thanks, GD, for the good work you do! You have probably saved more Celiac’s than the AMA….yeah, I know, with their record, I’m not sure that’s saying much. : )

    Reply
  12. 12

    david

    Fellow Celiac Lady- I went through at 16 what you went through at 53. I not only fired my doctor, I pooped all over him too. Anyway, I noticed that I started getting better almost the minute I cut evil demon from hell gluten out of my diet. I have no doubt you too will notice a difference.

    Report that quack to the medical board, the AMA, the FDA, and maybe he’ll get the clue he needs remedial education.

    Reply
  13. 13

    Madeline Azevedo

    Dear fellow celiac,
    Welcome, I’m so glad that you found us, a community of other celiacs, people who will always stand by your side no matter what happens & listen to rants.
    Your letter brought tears to my eyes. At first it was heart wrenching to read your story but then you said “This is the beginning”, and my tears came all over because I was so happy for you and that you’re glimpsing the light at the end of the tunnel.
    It gets better from here, is all I can say. Hope is allwayss there.
    Much hugs from a fellow celiac,

    Reply
  14. 14

    Adalaide

    Dude, you are always much loved, appreciated and needed. Sure there are other communities out there and I gladly participate, but you give a very unique perspective. No sugar coating, no BS. There is a very realistic, this is life with celiac and sometimes it sucks beyond all reason, and sometimes it is awesome, but it is worth every ounce of effort feel here.

    To the letter writer, it is true you story sounds eerily like our dear Irish Heart’s. I’m sure she will know just the right thing to say when she wanders along. Be patient, she may be slow getting here right now. Finding out you have celiac can be an amazing thing. It is an affirmation that you are in fact not crazy. It is a reason for you being so incredibly sick. And it is the open door invitation to begin on the road to health. You are still plenty young to find health again, don’t stress about things, stress just gives you wrinkles. Also, now that you know you have celiac you can begin to get better rather than withering away and hopefully that will mean no more heart breaking instances of seeing your son cry.

    Reply
  15. 15

    Rhiannon

    I too have felt like you do about blogging….does it really make a difference to anyone?!? And then, all of a sudden you read something from someone out there in cyberspace and you’ve made a difference to them, which makes it all worth it. My ultimate goal is to teach, encourage, and help people to realize that being gluten free isn’t the end of the world. I want others to understand that it’s okay to feel frustrated, but know that there are many others in the same boat. I want other people to know that they aren’t alone when they still don’t feel well after being gluten free. We’re all on a quest for a better health and a better life, so it’s good to lend a helping hand and encourage others who might be feeling overwhelmed or hopeless. We know all too well what the journey is like in not knowing what’s going on and feeling crazy because people don’t believe you and being misunderstand and struggling to get through day-to-day life, so it’s great to support each other through ALL of the good and bad!!
    Just want to say thanks for what you do. You HAVE to know you make a difference in people’s lives. :)

    Reply
  16. 16

    Lou

    Dear Fellow Coeliac,
    good luck with starting your healing journey – yes coeliac disease is a right bastard, but at least this is an autoimmune disease where we can improve our health with what we eat. Welcome to the community. And the brain fog does improve.

    Gluten dude – hang in there – like many others your blogs have made a real difference when I’ve been struggling to cope. Many thanks.

    Reply
  17. 17

    grace

    Oh no Gluten Dude,
    I am a newbie Celiac and stumbled onto your blog last month. Don’t go away. This will be like when I finally find a product I love and it gets discontinued. I should have written to let you know that a recent post about your birthday celebration contamination symtoms was sooooo timely. I was confused and bummed….finished reading your blog and said out loud “I knew it” it wasn’t me. It was that damn gluten in the Whole Foods salad bar. Some slob probably used a spoon from another food tray. Took a week to get better. Went mountain biking and pooped my pants. Although horrified, I told myself this has happened to someone else with Celiac disease, I’m not alone.

    Reply
    1. 17.1

      Darlena

      IBS is a wonderful side effect of my celiac disease. A wise person with IBS once said… “Never ever trust a fart when you have IBS.” Gross but true. It’s a motto I live by :)

      Reply
  18. 18

    Lori

    Gluten Dude,

    I just found your website several weeks ago, after being in denial for a couple of years of my gluten intolerance. Please don’t stop blogging. I, like the rest, need your support. God will continue to bless you on what to write to inspire us. Thank you for your love, support and dedication to helping others.

    Reply
  19. 19

    Paula Harding

    This story broke my heart and felt all too familiar to my own story-Nearly 5 years ago I was wasting away,dying slowly, but very visably to everyone around me- I was pregnant with our 8th child – My husband was terrified he was going to loose us both. To tell the truth, I was just as scared for my life and the life of our unborn child as he was- with no answers , and no idea where to turn.. I spent my days not being able to keep anything down half the time.. not even water- even though I was vomting 30-40 times a day and too weak to even get out of bed half the time-I still tried to eat- not knowing that what I was eating was making me sick.. dry toast! I dropped 20 lbs in a matter of weeks. My hair was falling out- what I had left had turned completely white- I was only 37 years old but Iooked like I 90! My skin was grey , my eyes were yellow.. – The care of home and the rest of the children fell to my husband who worked full time and my teenage daughter. All I could do was pray for help and mercy. God led me to a midwife that would actually listen to me and not treat me like I was crazy saying ” just eat crackers honey..it will pass”- when I said “something is very wrong here- this NOT just morning sickness .She didn’t diagnose me with CD- it would be nearly 3 years later that I found that out on my own.. but she did however give me some supplements that really helped me feel almost human and protein shakes tht I believe saved my life and said live on these if you have to.. and I did many days.. they were gluten free ironically . I could finally get some nurishment into my taxed system and the vomitng stopped. Every other doc had dismissed me like I was an overly emotional first time mom whinning over a little upset stomach. 8 babies- believe me I knew my way around morning sickness. I have hugged more toilets during my pregnancies than I care to remember- lol.. this was completely and totally different. We made it through- both me and the baby- she is a happy healthy 4 year old as long as she eats the way I have too.She has the same food intolerances as her momma but I am not complaining here one bit! I was still pretty sick after she was born and was for the first two years of her life- I just knew something was not right in my body- like it was shutting down.. Then came the golden day when I went gluten free for Adrenal gland fatigue-within in a week I felt better than I had in years… which lead me to find out 6 months later I have CD .. Post 2 years -self diagnosis. I am not fully well or healed completely. but I am doing 100% better than I was before.. Take heart new celiac you will recover and begin to get your life back. there is hope! GD, I love your blog.. it helps so much to know I am not a wack job and other people experience the same crazy symptoms I do. I am normal for a celiac lol First time I have ever fet normal in my life hee hee.

    Reply
  20. 20

    Darlena

    Welcome to a club that none of us really wants to belong to. :) You will find a lot of shoulders to lean on here. I’m a baby celiac too (got my diagnosis at the end of December).

    GF – I know that keeping this blog/social media gig going is a lot of work but I want you to know that every evening at roughly this time, I click on your site to see what’s new in the world of gluten. You make me smile, you make me cry, and you make me mad. But, most of all, you make me grateful that I don’t have to figure this all out on my own.

    Reply
  21. 21

    jillo

    Dude – Thank you for this blog! When I was diagnosed, my doctor said, and I quote, “you should avoid gluten” and sent me on my merry way. The nutritionist then proceeded to say that I would feel find in a few days. I found your sight about 4 months in when I was still dropping weight, when I was still having GI issues and brain-fog issues, even though I was 100% gluten free. I had started to doubt the diagnosis, wonder if there was something else wrong. I found your site and it told me that many, many people have issues for years afterward. I read that it takes a LONG time for your body to heal. I felt such relief. It was an an important turning point for me – I knew there was still hope… I just needed to be patient. And now, a year later, and after joining you in the cave-man (or woman in my case) world, I feel better than I have ever felt in my life. It was the cave-man thing that finally helped for me… and I wouldn’t have ever tried it without this blog.

    To the fellow celiac… give yourself some time to heal. I now know it’s a different process for everyone – and don’t let the doctors tell you otherwise. Celiac is nothing if not individual. Be easy on yourself, know your body is healing and you’ll start to feel better soon. It’s overwhelming at first, we all feel for you there, but with support like this blog and learning everything you can (because, unfortunately your doctors won’t take the time), you will get there and you will know what it’s like to have climbed the mountain and seen the view from the top! ((HUGS))

    Reply
  22. 22

    Kerri

    Gluten Dude, thank you SO MUCH for your blog! I have been dealing with the uncertainty of a non-coeliac gluten intolerance for a few months now and, as usual, medical help which has actually been helpful has been hard to find. So, in desperation I have trawled the Internet for information and advice, and your blog has been INVALUABLE to me, for a few reasons: the amount of information and knowledge I’ve collected from here has set my mind at ease about the weird way my body has been reacting to food, and how many other people are having the same reactions – proving (thankfully) that I am not just imagining it all. But equally important has been the insight I’ve gained into how other people deal with the psychological and social difficulties that living gluten free presents. I am ashamed to say that I am usually too lazy to bother posting comments but this time I really felt the need to tell you how much difference your blog has made to my life since I found it two months ago. I am not anywhere near as sick as the new coeliac emailer above, but hopefully, thanks in part to your efforts, I won’t ever be. I am noticing a HUGE difference to my health and am now bounding with energy and vitality thanks to the GF path I’ve found myself on, and your blog has given me confidence and calmness about trusting the signals my body is giving me. So, thank you from the bottom of my heart. Best wishes for finding some renewed energy and enthusiasm in your own life.

    Reply
  23. 23

    IrishHeart

    Okay, I had my pupils dilated today, so I can’t see well. I hope this makes sense and please, forgive any typos.

    First, GD— you get to take a break once and a while and recharge…and we are all still going to be here :)
    And I have told you before, if you quit, I quit. I, too, have said many times, “maybe I do not need to help on c.com or post on GD or reach out in my community anymore”…then I get a message from someone that says “I read something you wrote and I just want to ask….” and I feel a renewed sense of purpose.

    Our blessing as celiacs in remission is to pay it forward. :)

    My friend, you are much loved and much needed and… you make me laugh. And I get to say stuff on here I can’t say elsewhere, so please do not take away our “living room” where we all come to gather..
    (And I am not interested in starting my own blog, so you can’t quit.)
    ;)

    Secondly…To the writer ((giant welcoming hug to the family))!!

    Yes,. I can relate to the horror of slipping away while family wonders if you will make it and the dozens of doctors who made so many misdiagnoses and mistakes for a trillion years. .
    But here’s the thing: YOU WILL GET WELL!! You will heal and you will regain your life! We promise you.

    If there is anything at all I can do to help, either with links to info about safe foods, follow up care, shopping, even meal planning–anything at all-!!! —GD will put you in touch with me.

    Any one of us will gladly help.
    In the meantime, just know this: EVERY DAY IS A HEALING DAY.
    Patience and time are our allies in this healing phase.
    Hold fast to this thought: you are never alone, the celiac/NCGI community is a loving, compassionate supportive one.
    Plus, we are very funny and irreverent and laughter is good medicine!:)

    Take a deep breath, exhale slowly…. and know, you have already begun to heal.

    Reply
  24. 24

    Molly (Sprue Story)

    Gdude, when I first got my blood test results and was spending hours on Google trying to figure stuff out or at least cheer myself up, I found your blog by searching for “celiac disease funny.” Now I still come back every day for help seeing the humor in CD (not to mention all the good, serious advocacy you do on top of it). Thanks for everything! :)

    Reply
  25. 25

    Donna from Australia

    Hi Gluten Dude

    i’m feeling very flat too. i am a medically diagonosed CD sufferer for 9 long years now. i was looking on google for some new or interesting info on coeliac matters. i found you :) you have heaps to look at here and i like the tone already. have you done any blogs on depression and CD? i have been thinking alot recently about serotonin and how 95% of serotonin is produced in the gut and only 5% in the brain. being that depression is right up there on the long list of effects do you have any opinion on this matter?

    Reply
  26. 26

    Suzanne

    Gd, I am grateful for you, please take a break but don’t give up on your blog,it’s amazing. You have helped still another sufferer find her way, blessings.

    Reply
  27. 27

    Doris

    Welcome to the community. We all got here one way or another whether thru doctors, friends, chiropractors whatever. The journey may be scary at times and frustrating but you will make it. Take it from me I was diagnosed by a chiropractor when I was 57. But I had the other problem of gaining weight not losing it so drastically. With Gluten Dude’s blog you will find the resources you need to start the healing process. Your future is a bright one. You will need to be vigilant on your diet restrictions but well worth it.
    If GD were missing from the blogworld it wouldn’t be the same. He keeps us all well informed. Even other bloggers refer to his quotes and new items he has found. Gluten Dude don’t ever think that no one cares or there is nothing left to be said…that is only writer’s block speaking to you. There is always new avenues out there to explore, new research, new recipes…you get the idea we need writers (bloggers) like you who care.

    Reply
  28. 28

    Gluten Dude

    I cannot thank everyone enough for your kind words. It means the world to me. I am not going anywhere. This is my second home now and you are all my second family. Let’s keep on keeping on!

    Reply
  29. 29

    Claudette

    Community creates itself in some of the most interesting ways… and from all around the globe, too!

    To Donna from Austraila: depression and CD is an interesting interaction. Undiagnosed CD can certainly create a kind of depression and the disease itself can mimic mental problems (when I’ve had gluten, I look shockingly bipolar). Post-diagnosis, this gets more complicated because the foods we can no longer eat are primary sources for B-complex vitamins. Further, B-complex vitamins are the building blocks for the neurotransmitters most involved in the development of depression, both unipolar and bipolar – especially serotonin. So now we’re “shorted.” Whenever I give advice to people with celiac (prefaced with the “I am not a doctor” liability claim – I’m a social worker), I recommend a B-complex vitamin supplement, particularly one high in B6 (pyridoxine). When I worked in mental health, we used to use B-complex vitamins in the management of bipolar disorder in patients who did not respond readily to medications. So since the CD diet is already shorted in B-complex vitamins, a natural propensity to depression is neurochemically not surprising.

    Reply
  30. 30

    Constance

    Gluten Dude, your blog stands out far above all the other “gluten” blogs, and reaches us so deeply because you consistently tell it like it really is for all of us living with celiac or gluten-intolerance. You don’t bore us or alienate us with placating platitudes. You expose the absurdities that surround us and that make our lives so difficult. And sometimes you make us laugh so hard because you often present absurdities with such in-the-face-WTF-ness that we instantly relate, and we instantly know we are not alone anymore. Humor is restorative, and you share with us your own unique humor. Your humor pops out of my computer screen! My day is not complete without it. It gets me through. The absurdity may be a “cardboard” gluten free bun that may not even be truly gluten free (I’ve lost count of all the times people have (absurdly) said to me: “But what’s your problem? There are so many gluten free products for you to eat!”), and of course there is nothing quite like the life-threatening absurdity of a doctor like the one this man fired. I think we’ve all had doctors we’ve fired, I know I have, and when I look back on it all, it was all totally absurd the things those ignorant arrogant doctors told me, the years spent suffering because I was not diagnosed, all of it beyond absurd. Gluten Dude, you give us a place to connect with each other, where we don’t have to pretend or be cheery when we really feel like crap because we got glutened, or are dealing with friends or family who don’t “get it.” YOU get it, and so does everyone here. And we all also get that you are living with this too, and sometimes you need to take time off, just like the rest of us. Don’t worry or feel guilty, not for one second. We will all keep this page going with our posts and comments and shares whenever you need some down time. You make a huge difference. I believe that for every email you get, there are countless others you have reached who just don’t feel up to writing, but we are still here, and we still need you, and we still need this place you have created for us.

    Reply
    1. 30.1

      Constance

      CORRECTION: I meant to say “the woman” who fired her doctor. I have gluten brain.

      I too, want to welcome her. The only thing harder than being sick is helping others cope with your being sick. If they are grown adults, then it’s really up to them, we can only give them the facts and tell them we’re doing the best we can, and tell them practical things they can do to help us. We all go through this. We need to be strong for ourselves first, and them second, and that will make it easier for them in the long run, even if they struggle. They need to learn not to over-burden us with their own feelings because we are struggling, in a physically depleted state, with our own feelings. I can relate to her cat being the only one she can feel comfortable around. There is nothing like the unconditional acceptance and love of a cat or dog. I can also relate to her looking at her 18 year old cat and thinking her cat feels better than she does. I used to stare hopelessly out my window after being up sleepless all night, and watch out my window my 92 year old nearly blind neighbor across the street, come out at 6:00 AM like clockwork and trim his hedges every other day it seemed, and I’d think, “he feels a whole lot better than me,” and I was in my 40s at the time.

      Reply
      1. 30.1.1

        IrishHeart

        I can relate, Constance.
        Before Dx, when I could barely walk or dress myself, my (then) 84 year old Mom would report going to the gym 3X a week for her cardio kick-boxing sessions and step aerobics and how she raked up all the leaves in her yard.

        I would get off the phone and cry to the hubs “what the hell is going on here. Look at what she can do —and I can’t even open a freakin jar!”
        My muscles were beginning to atrophy.They felt like wood and I lost muscle mass.

        I would see elderly peeps gardening, carrying bundles, etc. and wonder why I could not walk up the stairs without gasping for breath. I would report this to doctors, but they did not seem to think it was a problem except that I should force myself to go to the gym, too. I tried, but the burning neuropathy and bone/joint pain made staying on a treadmill tricky. Nearly broke my neck when my feet and legs went numb and I fell on the stupid thing..

        That was then. This is now.
        I finally returned to the gym after a lengthy absence. But it took 2 years of physical therapy, medical massage and a whole lot of patience to get here.

        I have muscles again :) Still working on those “steely buns”.

        Reply
        1. 30.1.1.1

          Gluten Dude

          “Still working on those “steely buns”.”

          Any relation to Steely Dan?

          Reply
          1. 30.1.1.1.1

            IrishHeart

            I played that Aja album so many times, I wore it out.

            albums…remember those? (man, I am o-l-d) :)

            Reply
    2. 30.2

      Gluten Dude

      Wow Constance. All I can say is THANK YOU.

      Reply
  31. 31

    Constance

    P.S. For the woman who wrote the email: My grandmother dropped from 120 pounds to 80 pounds within two months. Everyone thought she was dying, but no one knew why. After weeks in the hospital, her doctor got replaced by another doctor. The replacement doctor studied her chart and medical file and immediately identified her as celiac; she had already been on intravenous food for weeks, so he took her off all the meds, and started her over from scratch on a new diet. She gained the weight back, got better and went home. She was in her early 80s when this happened and she remained independent with minimal home assistance (due to her age and hip replacement), in her home with her husband, until she passed at 94 from pneumonia. That was years ago. So you can get through this, but, in addition to thorough diagnosis by a celiac expert, you may require hospitalization to be fed intravenously while your small intestine heals, if it is determined you have atrophy in your small intestine’s villa (which can heal). This is not an uncommon procedure. You need a true celiac expert. One of the world’s best is at the Celiac Disease Center at Columbia-Presbyterian-New York medical center in NYC. Dr. Green and his colleague treat patients from around the world.

    Reply
  32. 32

    Jenny

    Wow, GD – I’m impressed. I am new to blogging and can only hope I have the impact that you have based on the comments I see here. I stumbled upon this post, never reading your blog before and the comments truly tell a story. Gluten Dude, you are loved. Stick with it. I will certainly be a regular reader from now on.
    Thank you for all you do!
    Jenny
    glutenfreetailgateparty.com

    Reply
    1. 32.1

      Gluten Dude

      It takes time to get there…but you’ll get there.

      Reply
  33. 33

    MerLow

    Don’t ever stop writing Gluten Dude. You are more helpful than you will ever know!

    Reply
  34. 34

    โรงงานเซรามิค

    What’s up Dear, are you truly visiting this site daily, if so after that you will absolutely get pleasant knowledge.

    Reply

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