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61 Comments

  1. 1

    Nutrimom

    Yes, I LOVE this!!! Thank you for posting this- I am always, always told that gluten free is a “fad” and there is no proof. But I do have proof- personal and from my clients. Ultimately, everyone needs to do their own thing to stay healthy and feel great.

    Reply
  2. 2

    DeeAnn Kendrick

    I eat G-free because I am recently DX Celiac…it is not fun for me, it is not a diet, it IS my new lifestyle. I am sure there are people that will get annoyed from time to time but I don’t care. They don’t have to go home from a restaurant or social gathering, sick for days. I do not get annoyed with anyone who is lactose intolerant or anyone that has a nut allergy, so I expect the same respect in not being able to get gluten. :) Thanks for sharing Gluten Dude

    Reply
  3. 3

    KarenBarteaux

    Gluten Dude, everything you wrote applies to me…It is so disheartening listening to people tell me “it’s all in my head” or one bite wont hurt you, or why don’t you just eat some to satisfy yourself…and my favouite..watching people paying huge prices for gluten free even If they aren’t celiac…it is the healthy way to go , they say…(urge to kill)!!!!!!!!!….and then there is …: Look, just eat it, and if you get sick, so be it, you enjoyed it at the time….have to explain that it damages my gut and is dangerous, not to mention the diaharrea that I experience that keeps me in the bathroom for days …I would dearly love to visit my favourite fishe and chips place or a turkey dinner with real gravy and dressing…thanks for listening

    Reply
    1. 3.1

      tim

      Number one reason for living GF, for me, is to give myself a chance at living a good long while more. And so, any side effects are (supposed) to be written off as unfortunately necessary inconveniences.

      I’m challenged most, perhaps, by the various ways people (doctors included) have come up with of saying “it’s all in your head”. I greatly respect those that need to self-dx their gluten intolerance; being asked if that’s what I did myself, though, is just a less blunt form of “it’s all in your head”. Being accused of attention seeking through GF living is pretty offensive, probably because it really makes no sense, but people let it leave their mouths anyway.

      Reply
  4. 4

    Ken

    I just passed my one year anniversary of my Celiac diagnosis. In this one year I’ve learned a whole lot about food, and as much about people.
    I hear some of your stories and count my blessings. My family and friends have been very supportive, most going out of their way to accommodate me. I’ve had my share of eye rolls, but the more educated I become about what and where I can eat, the less I have to deal with the doubters.
    If people ask me about it, I tell them what I know. I think their questions come out of good-natured curiosity. It’s a bit strange for me, because I’m not one to go shouting my medical history from the rooftops.
    It’s all about accepting and adapting. I miss having a Shock Top and a NY slice, but I do NOT miss all of those ailments that came with it.

    Reply
    1. 4.1

      Gluten Dude

      “It’s all about accepting and adapting.”

      Truer words have never been spoken.

      Reply
      1. 4.1.1

        Ken

        True story:
        When the doctor called me after the biopsy came back positive, I at Bareburger and had just ordered a burger on a multi-grain bun.
        Doc:: “I’m afraid you do have Celiac.”
        Me: “What do I do?”
        Doc: “Stop eating wheat.”
        Me: “Waitress!”

        Reply
        1. 4.1.1.1

          IrishHeart

          dang, Ken….most people would have eaten that burger anyway.
          and had a beer to boot.
          You know, one last hurrah and all ??

          You ARE a good soldier. :)

          Reply
          1. 4.1.1.1.1

            Ken

            I think I’ve had more than my share. Besides, there’s always Omission… Kidding!!

            Reply
            1. IrishHeart

              :)
              and as always,Ken, thanks for the morning giggle!

              Wish you were going to be in Orlando April 5th. :(
              Drinks are on GD
              (not) Kidding!

              Reply
              1. Ken

                Me too, but I look forward to hearing the reports!
                Thanks to both of you for the support, laughs and common sense.

                Reply
  5. 5

    Chell

    I don’t call diet changes fads,..I don’t allow gluten s and other things in My house, I don’t care if You roll Your eyes at Me when I say no ,to going to eat out!,..and yes, id be glad to take You to the Doctor too see why YOUR sick!.

    Reply
  6. 6

    Kim Rice

    I agree with all of this except, I don’t eat gluten-free because I have CD, I eat gluten-free because I have an issue with gluten (and other foods) that western medicine does not quite understand yet but just recently gave a name, NCGS. I eat gluten-free because it depresses me, causes me anxiety, severe stomach pain, diarrhea for 24-48 hours followed up by about 5 days of constipation, skin boils, joint pain and canker sores. And, that’s just wheat gluten. I have a long list of other foods with their corresponding side effects.

    Reply
    1. 6.1

      EllieAte

      Kathy,

      Are you sure you don’t have celiac disease? All those symptoms you describe are classic celiac symptoms. I know there is NonCeliac Gluten Sensitivity, but your symptoms go beyond the typical NCGS. Anyway, whatever you have, whether celiac disease or NCGS, I wish you luck in your GF living!

      I have constantly had to deal with doubters, and one thing no one is mentioning in these comments is that it is not JUST all the awful immediate effects of eating a tiny amount of gluten that we have to contend with – it is serious damage to our bodies, fertility issues, increased risk of all kinds of cancer, etc. that gluten in our systems causes. I’ve started asking doubters when they say “it’s just a little bit, that won’t hurt you”: “How about I fill your lungs with the smoke from a pack of cigarettes? It’s just a little bit compared to what heavy smokers inhale.” They usually get the point.

      Reply
      1. 6.1.1

        EllieAte

        Sorry! I meant to address this to Kim’s comment, not Kathy’s comment below! Apologies!

        Reply
  7. 7

    Kathy

    I want to carry that letter around in my purse to show to people who roll their eyes when I mention GF.
    I eat GF because I was dx’d with celiac nearly 5 years ago. Plain and simple. That should be enough for everyone, but not everyone is aware.
    I do want to take a moment in this venue to say that I did have a surprise moment yesterday. We went to the annual Shrove Tuesday (on Sunday) Pancake Breakfast at our church. I was intending on bringing something with me to eat, but to circumstances beyond my control, I ended up forgetting my food. But, to my surprise, one of the women had made a GF coffee cake – and had written out everything she had used. She approached me and said that she had bought new utensils so they wouldn’t be contaminated, and used a disposible pan to make the treat in. She even brought me the rest of the mix that was left over, so I could use it myself. This wasn’t someone who was GF at all but someone who took the time to learn and make sure there was something that I could enjoy as well. Right now I am the only on in the church who is GF, but we’re hoping the word will get around that this church cares.

    Reply
    1. 7.1

      Gloria @ glutenfreepoodlehome

      That was so special Kathy. Next time you see that lady give her a hug from me. I had a nurse I work with do something like that for me and it almost makes you cry doesn’t it? I always say one nice person can make up for 10 creeps.

      Reply
      1. 7.1.1

        Kathy

        Amen to that!

        Reply
  8. 8

    Candice

    Dead on! Excellent post. Especially loved #3.

    “I am not eating gluten free to be the center of attention or to put a damper on your party.”

    Reply
  9. 9

    Sarah

    I eat gluten-free because even a fork not cleaned properly will leave me with at least a day and a half of symptoms. I believe this happened just this past weekend by the way. No telling what would happen to me if I knowingly consumed something with an actual gluten ingredient. Thankfully I have very supportive family, friends, and co-workers, so I don’t really have to worry about the eye-rolls and snide remarks. I’m so very thankful for my mother who tries very hard to make things I can eat. Things don’t always work out (e.g., the fork incident), but we’re both still learning.

    Reply
  10. 10

    Kathyperm

    Love the letter.. and yes it is so needed.. I have shared on my FB page. I eat gluten free because I MUST.. To make a long story short, if I had been told how serious eating GF must be taken, I would not have had to a liver transplant back in 2000. My doctor that diagnosed me back in 1994 remarked to me that any time a celiac wants to lose weight, they can just eat a piece of bread !!! Now my kitchen is totally GF and don’t see that doctor any longer..

    Thanks for posting this letter.. certainly makes me feel better and hope many others share it.

    Reply
  11. 11

    Gloria @ glutenfreepoodlehome

    When I tell people I have been gluten-free for 18 years that shuts them up quick. I guess they think I must be pretty serious about it to have gone that long. It cracks me up when people ask “Oh my God, what can you have?” I always answer “VODKA!”
    If people feel sorry for my limited selection at any social function I always say “Don’t feel sorry for me, I’m a gourmet cook and can have anything I want.” Then they want to come home with me.

    Reply
    1. 11.1

      Morgan

      Hahahahaa! I’ll have to remember that answer! Vodka! You’re very very funny!

      Reply
      1. 11.1.1

        IrishHeart

        oh honey, we all say VODKA!!

        lmao :)

        Reply
      1. 11.2.1

        Kathryn

        Vitamin V !

        Reply
        1. 11.2.1.1

          IrishHeart

          hahaha!

          Vitamin V
          oh that’s a good one, Kathryn!
          I’ve got a glass full of of Vit V right here.

          Reply
  12. 12

    Crystal

    I eat gluten free to try to help my 20 month old child. She seems to get headaches, hit her head on objects and people, shakes her head violently, has verbal issues, walking issues, rocking and more problems when she eats it. I can’t stand watching my baby in pain so I remove any food that causes it.

    Reply
  13. 13

    Becky

    I’ll just add what my husband says to people who don’t seem to take my need for gluten free seriously: “If she eats even a tiny bit of gluten, she will be up all night puking and miserable.” That ususally puts an end to the “fad diet” talk.

    Reply
    1. 13.1

      Susan

      Ditto! I’m glad to know I’m not the only vomiter in the group! It’s such a terrible feeling. And then when people are like, “Oh man, I can’t live without bread/beer/pasta/pizza/whatever, I’d just die.” I’m like “Hm yeah if you spent the next 7 hours puking, you’d reconsider what you can and can’t live without.”

      Reply
      1. 13.1.1

        Becky

        To people who are surprised to learn that I have never knowingly cheated once I went gluten free, I say, “If gluten made you spend 8 to 12 hours curled up on the bathroom floor in agony with stomach cramps, vomiting every 30 minutes or so and alternating sweats and cold chills, I’m pretty sure you would never eat it again.” I hate to be graphic, but usually after that explanation, people bend over backwards to help me stay gluten free!!

        Reply
  14. 14

    Diagnosed in 2013

    I guess I’m lucky I haven’t had to deal with disbelievers, eye rollers, “you can have a bit” people. I credit it to living in a place that’s a lot more aware of food allergies and intolerances than other places I’ve lived. I don’t blame people for saying “what can you eat?” – a year in and I wonder that myself sometimes! :) Don’t get me wrong, I know side dishes like fruit and veggies are okay, so is the main protein of meat, but the preparation choice can often be one of repetitive, more expensive, or time consuming. Although without other dietary restrictions, I think it’d be okay. But overall, avoiding gluten is a lot easier than other sensitivities, I am finding!

    PS – 15+12, these math questions are getting too tough, GD! :)

    Reply
    1. 14.1

      Susan

      Just curious – what other intolerances do you have? I can’t have dairy, garlic or onions which is tough since every cuisine’s secret ingredient is garlic.

      Reply
      1. 14.1.1

        Diagnosed in 2013

        Dairy, most nuts (including sunflower oil), and a handful of less common stuff. Seems to eliminate most GF products (I know, whole foods diet, but time and money aren’t unlimited!). Eating out, haven’t figured out how to do that yet. Miss it so much & even more as time goes on!

        Reply
  15. 15

    Morgan

    While out with the hubby the other day, we decided to go out to eat at a restaurant that I’ve have had super good luck in never getting sick. When the waitress came up I ordered off the gluten free menu, and she looked at me, smiled and asked, “Is this a lifestyle or an allergy?” I answered allergy, but it was a surprise to be asked that.

    Reply
  16. 16

    IrishHeart

    I eat GF because if I don’t, I will die.

    *******************

    Also, Gloria said this:
    ” I always say “Don’t feel sorry for me, I’m a gourmet cook and can have anything I want.” Then they want to come home with me.”

    THIS IS ME. Nobody is hungry or “deprived” if they are in my house.

    Reply
  17. 17

    Wanda

    The young cashier at the liquor store scanned my gluten-free beer and said “Are you Celiac? I call it ‘silly-ass'”. He was clearly expecting a good ole’ laugh out of me.

    Reply
  18. 18

    Mary Kate

    I eat gluten-free because I got some good and bad medical advice — an IgE test showed gluten might be an allergen, so I cut it out, as advised. Then, when the other doctor I worked with “noticed” I’d never been tested for celiac, I was told to eat gluten again so I could be tested. It made me so sick I couldn’t function.

    So I don’t know if I’m celiac or not. Can’t eat enough gluten to get the testing that the insurance company will pay for done right.

    I don’t eat gluten because I can’t afford to miss work for being sick.

    Reply
    1. 18.1

      Erin

      Ugh! Mary Kate, how frustrating!
      I HATE uneducated doctors! I’ve always had digestion issues, so I’ve had to see GI Dr.s a lot over my lifetime. I figured out on my own that I’m gluten sensitive (had debilitating migraines, wheezing, depression, digestion issues, cavities, mysterious rashes, weight GAIN, etc. that have all disappeared since the TOTAL cessation of gluten consumption) and this one GI doc looks at me and because I have not been officially diagnosed as Celiac or intolerant, tells me condescendingly that I can start eating gluten again. I couldn’t believe it! I said “No way!” And he tells me to eat gluten for 3 months and be tested.
      I suffered for YEARS before I figured out it was gluten that was killing me, no Dr could help me, they only gave me meds to treat symptoms. (some of which have GLUTEN in them!) There’s NO WAY I would ever intentionally eat gluten to find out if I have Celiac. The basic treatment is the same – don’t eat gluten at all – not even a spec!

      FOR THE OTHER FRUSTERATED SOULS out there that have insensitive friends/family/noses know-it-alls in their lives, I tell you I understand. What helped me is that I was SO, SO, happy that I found out why I felt so awful, that it was something I could fix, and not take meds for, that when anyone ever gave me crap about my diet, I would tell them “I’d rather go hungry than eat that.”
      It showed me that I’m the only one who truly cares what I eat – and that’s not a bad thing, just the reality.

      Reply
      1. 18.1.1

        Rachelle Harris

        Oh Erin, I feel your pain. So much of your story sounds like mine. The comments I have tolerated over the years just because I after 3 biopsies all negative except one inconclusive, no coeliac diagnosis, so the docs slapped a NCGS label on me and left me to my own devices to follow gF diet. I have had the fad diet innuendo to cope with, the just have a little, the eye rolls, the disrespect of it all. As if I would put myself through this if I did not have to !

        Reply
  19. 19

    Peggy Ford

    I have been GF since August 2006 and for the most part my friends and family have been very supportive…especially the ones who knew me before going GF. I’m not celiac but I am extremely sensitive to gluten especially wheat gluten and I experience a lot of the same reactions as the rest of you do. I remember when my son brought his wife & baby to visit me the year before I retired (2009) and we were driving around showing my d-i-l all our favorite places, as we would pass a gas station or a fast food place, etc that had a bthroom I had had to use in the pass, my son would ask if I needed to stop because that was how it had been in the pass…eat then hit every available bathroom in the area…and I told him no, I was fine. He was impressed that just chaning my diet had made should a huge difference in where and what we could do now! So now that I’m retired & living within an hours drive from them, he & my d-i-l always check with me to be sure that the food they are serving is ok for me to eat…even my d-i-l’s mom checks with me regarding the holiday menus since we always spend them together. My quilting buddies also are very supportive and will make GF treats/snacks so that we can all enjoy them or will tell me that there is wheat/gluten in the food so I don’t eat any & get sick.

    Yes there have been a few eye rolls and had some tell me I could eat the fruit filling and leave the crust or eat the cheesecake & leave the gramham cracker crust. I just look at them and tell them they really don’t want to see how I react to gluten…my reaction time is 20-30 minutes after eating any gluten. Mostly I ignore those people…they are not worth getting into a discussion with about the dangers of eating gluten because they don’t care.

    Love reading the posts on this site.

    Reply
  20. 20

    not mom-of-the-year

    I eat GF because my son needs too. He had failure to thrive, though the celiac test came back negative. With nothing left to try, I did some research and found he had MANY symptoms of gluten intolerance issues. He went GF and is thriving. The pediatrician is ecstatic! I did GF out of compassion for him the weekend of his birthday…nothing on any GF menu was the same as what “everyone else” was having (Yes, I know…get used to it…but the poor kid is 8 years old!) So I told him that I would eat GF with him. I was GF the whole weekend and many of my health issues cleared up that weekend. I woke up Monday thinking… wow! what is this? is this NORMAL? if this is what normal feels like…how did I get to this point… It was at that moment I realize that I had been GF all weekend out of compassion for my son… So I guess, Gluten Dude, I am one of those folks you hate. But I assure you this is not a “fad” or a “diet” and I have stayed gluten free since that moment. I do NOT want to EVER go back to feeling that sick all the time. I may never know what it was or why…but GF gave me a whole new life!

    Reply
    1. 20.1

      Sam

      Noooooo!!! I can’t speak for him, but I highly doubt that GD would lump you in with the fad dieters. You’re doing this for your health, because you have found that you truly feel better for it, not because it’s the latest ‘craze’.

      Reply
    2. 20.2

      Gluten Dude

      You’ve got me all wrong. I have always said I support anybody who gives up gluten for health reasons.

      Reply
  21. 21

    IrishHeart

    Dear not Mom -of-the-year

    You are a very wise and unselfish mom, IMHO and you ARE GF for health reasons, hon. You feel well off it–that speaks volumes!
    .
    My husband went GF with me about a month after my diagnosis because he felt the risk of CC was too high and because I was very ill and weak at the time, it was just too complicated to try and negotiate making two of everything. He is not hungry, nor does he feel deprived in any way. We eat very well .

    He is as healthy as it gets. Did he have a gluten issue? probably, but even if he hadn’t, doing it in solidarity with me is a noble reason (and even those pesky seasonal allergies he suffered have resolved. It’s a win-win.) lol

    I would not call what either of you did “faddish”.

    Glad your son is doing so well!!! :)

    Reply
  22. 22

    Jillian

    I appreciate this post and know where you are coming from. We avoid gluten because we don’t have a choice. I want to add to it… When I read articles about cheating on the gluten free diet….there is no cheating for me because I get violently ill. It is not a diet for me… It’s a lifestyle that I was recently forced to embrace. However, because of the growing popularity of this “diet”, I believe it is helping spread the knowledge of Celiac and gluten intolerance. There are more options because of how common gluten has become, whether it be because of a disease or a lifestyle choice. If so many people want to jump on the gluten free bandwagon, I say the more the merrier! The higher demand for gluten free products and menu options, the better for me!

    Reply
  23. 23

    GF Canada

    Jan 2014, gf now for 7 years. Back in 1987-88, started to get much worse. 2004 started to suspect what I was eating and drinking was causing all the problems. Started to test and do a food and drink diary. Everyday would feel just worn out. Biggest problem was always a 8 hour delay until it hit me. Fooled me for years and had about 20-25 different health problems building up.
    Finally went to a local naturopath Jan 2007. She knew right away and confirmed Celiac Disease. Started to research everyday gluten and it was the only reason I went online and got a computer. I not as trendy as most. lol Anytime I had some gluten by mistake, big problems fired up 8 hrs later and then for 2-3 days after. I call it a gluten hangover.

    This female who made this list took the words right out of my mouth. Family and friends know with me that there is no screwing around anymore with bread or a beer. Last year around this time my health was terrible again. Finally got a MRI and confirmed I do not have MS. Went to 2 different neurologists and confirmed it wasn’t Parkinson’s Disease either. Not sure what the hell was going on. Still healing everyday and diet has been everything.
    I’m 6 ft tall and weighed 145 lbs for over 20 years. Now I’ve hit 180 lbs and body working much better. Doesn’t matter to me that no MD in Canada will say I’m celiac. They can all go fly a kite. Screw them because I prove it everyday:)

    Keep up the fight GD and thanks to everyone else with all the info you provide. Really want to go to New York and see Jennifer and eat all her goodies and hang out. Frankie Beans here I come. Also want to broadcast while I’m there. Only one place I can talk about bowel movements and be funny at the same time. Baba Booey Baba Booey lol..

    Reply
  24. 24

    Daniel

    I’m gf due to hashimotos. Gluten attacks not only my gut but my entire endocrine system. My thyroid, my liver, my joints, my brain, my fertility. It’s not all in my head.. Trust me! If I didn’t need to I certainly wouldn’t be gluten free! Gluten free Does not equal healthy. They are two different things gf is a necessity and certainly not a pleasant one.

    Reply
  25. 25

    Gluten Free Makeup Gal

    I need a typographic poster of that list, huge, framed, in my kitchen. Then an infographic that I can tweet and share and reference. And then-

    Aw shoot. I should just make it myself. The infographic, at least. Gluten Dude, you think it would be OK to immortalize that composition into sharable, graphic form with proper attribution (back to this post)?

    Reply
    1. 25.1
  26. 26

    Kimberly Kuehl

    Hello, thank you for info on Jennifer! I have pre ordered along with 2 people who are trying to understand this disease. I wasn’t feeling well again, hate that:) and found one of my meds does not contain gluten, however, batches are sprinkled with wheat flour to prevent sticking! I was surprised. Four days without med, feeling better! One must do his or her research, which I know is time consuming, etc…..thanks for all you do! Kimberly Kuehl

    Reply
    1. 26.1

      Gluten Dude

      My pleasure Kimberly…thanks.

      Reply
  27. 27

    Catherine N

    I’ve never been diagnosed celiac. Started eating gluten-free as a test for trying to deal with my endometriosis. When I tried adding gluten back, I got ill. And the reactions seem to get worse the longer I’m off it! :) I’ve had stupid doctors too. The test won’t tell you anything because I’m NOT eating gluten. And I’m not going to go back on it and get sick.

    The last time I went to the booze depot, I suggested that maybe they shelve the hard cider next to the gluten-free beer, which they thought was a wonderful idea.

    But yeah, I have a shared kitchen in a family home, and end up getting sick very easily when visiting family. Wipe down all counters, etc constantly. I just hate feeling paranoid when visiting family…I’ve turned into a bit of a recluse. So many things revolve around food/gluten, and I hate feeling like Meg Ryan in When Harry Met Sally, when ordering.

    I’ve given up trying to date, too. There are only a few safe restaurants, and the last guy I dated kept wanting to go out to eat, but got tired of the few places I could eat.

    Its just discouraging. The one good thing is that Costco has more g-f products. And more mainstream groceries have g-f. I do get tired of g-f being conflated with losing weight, or being “healthier”. The stuff has more calories, more fat, more sugar. No, gluten does not equal carbs. But one crumb will kill me.

    I just wish more companies would do single-serving packaging. It is JUST me, I want ONE cookie. One. Not a whole box. And don’t get me started on having to have a fridge full of various flours. (or the moth invasions).

    One good thing, Cook’s Illustrated has come out with a gluten-free cookbook. I just wish I didn’t feel so damn alone. Stupid gluten.

    Reply
  28. 28

    CKPhoto

    I eat GF because it is a contributing factor to my Chronic Daily Headache. If eliminating gluten reduces the pain I have 20 days a month, I am willing to do it. Another non-CD, but not doing this as a fad diet either. I went GF for a month, then had a wonderful Italian dinner to test my theory. I ended up with a high pain headache day. They say an elimination diet is the best test. So be it.

    Reply
  29. 29

    Tori

    Gluten Dude,
    I enjoy your website and I really appreciate what you do for the Celiac population. You are the big brother who stands up for us all, and I would just like you to know how much it means to me. It is nice to know that there are people there to defend us, it helps very much (especially with your large audience). You help to educate the ones that do not have to deal with this and for that I am forever thankful.

    This is my story:
    I am 18 and I was diagnosed with celiac in the summer of 2010. Before diagnosis I had the symptoms for about 3 years. I am quite strong so I did not complain and I did my best to mask my pain, for I did not want my mother to worry and I was also afraid of what the diagnosis would be. Finally after the 3rd year of having the symptoms my mother and I began to really see how serious it was. In a sense I had become anorexic (this is not because I wanted to or I thought I was fat). Every time I ate I would feel some of the worst pains I have ever felt, and eventually I lost the desire to eat I would think “What’s the point its only going to hurt me anyway.” I had no idea what it could be, for it did not matter what I ate, it always made me hurt (and I had never heard of celiac before then). My mother started researching and she had a feeling it was either Celiac or Candida. I was losing much weight at this time, from malnutrition, and it was then that we decided it would be best if I went to see a doctor. I was then diagnosed with celiac.

    I can relate to what people have been commenting, for I have lived through it all. Although the worst I would say was when I was in 11th grade and my ‘friend’ would shove gluten filled foods in my face. At first I was quite calm and I would just back up immediately and say please don’t. It wasn’t until we were arguing about something else and she randomly brought up that I would “freak out” if she would shove stuff (cookies, bread, etc.) in my face, that I lost it. I was completely enraged, I was screaming at her saying, “Of course I’m going to freak out when your F***ing around with my disease, you have no idea how it feels…” yada yada you know how it is. However, after I had cooled down I apologized to her for screaming at her, as I knew it wasn’t fair of me to do that. I explained that I should have been more stern with her to begin with, and that I had no right to scream in her face. Although I also let her know that she did not have the right to shove gluten-filled things in my face, regardless of the reason, and that it wasn’t, still isn’t and will never be a joke to me… All I asked of her was to respect me and my wishes/disease and she has not done anything else like that since.

    However, now I know, from personal experience, that this kind of ignorance exists, and how scary it truly is… Especially when it occurs in food producing companies, such as your Chex example, which is shameful, and has shown us how important it is that people know the reality of Celiac Disease.

    If companies are not careful, they will be sued for their false advertising that lead to a DEATH. Lets hope that people learn the SEVERITY of Celiac before that happens..

    Reply
  30. 30

    Lynne

    Late to the game, but couldn’t agree more. And I know I’m going to piss off a WHOLE lot of people here, but I think people who actually have Celiac Disease get all of these comments/are treated this way because so many people “feel so much better not eating gluten,” and have inadvertently created these hardships for people who have NO choice.

    Yes, all you people eating your Mentos, your licorice, using pretty much any kind of lipstick, eating your Mars bar, french fries from the fyer that had breaded onion rings, a hamburger from the grill that had buns toasted on it…etc, etc, etc. I mean you. You do NOT have Celiac.

    If you had Celiac, you’d have to research Every. Single. Thing. That. Could. POSSIBLY… go in your mouth. If you had Celiac, you WOULD get sick after eating ONE Mentos or eating with lipstick on (because you ingest it, hello???). You’d have to wipe down every surface you might use at work for your food to get rid of leftover specs. Every time. EVERY time.

    So no, don’t tell me you “feel better being gluten free”, because if you can cut out most gluten and “feel better”, you do NOT have Celiac, and do not know what it’s really like to live truly gluten free.

    This is not even taking into consideration the friends who are “gluten free” unless there are no other options (ie, they eat gluten free unless it’s not convenient, like on vacation for example). If you have Celiac, I don’t give a rat’s ass how hungry you are (and I’m a cyclist and have been deliriously hungry after failing to bring enough food),you go *hungry* if there’s nothing gluten free available. Period. Eating food with gluten is not an option. There IS no option. You have a disease and you don’t go on and off a disease when it’s inconvenient.

    Finally, how about the folks who are “gluten free” and are so kind to go out with you to a place you can eat (which true Celiacs do very, very rarely…seriously, a couple of times a year). You feel so good to be with someone who really gets it and struggles with the disease. Until they decide to “have a little gluten” in a sauce or a drink or a beer- and eat it right in front of you. It honestly feels like a kick in the gut to have someone do that. Like eating candy in front of a little kid. Because you bet your sweet ass I want that beer or sauce or salad dressing so bad I could cry. But I CAN’T have it. Period. But you can. So no, you don’t know what it’s like to have Celiac and to REALLY be gluten free.

    (I’m not really as bitter as that sounds, lol. But that is how it feels without sugarcoating it so I don’t hurt the “gluten free” folks’ feelings).

    Reply
  31. 31

    Cheryl

    I nearly died from Celiac before being diagnosed. It can and does kill by causing damage from starvation and malnutrition.

    I still have serious damage to my body from 40+ years of being told there was nothing wrong with me while doctors ignored all the symptoms of Celiac.

    It isn’t any fad for me. I have to eat to live – literally!

    Reply
  32. 32

    Ashlyn

    Love, love, absolutely love this post. In 1 year as of last month, I have lost 82 pounds. :D Another 80 to go. I quickly found out during the holidays that even a crumb too small for a mouse (guess where I got that from, :P) makes me look 3 months pregnant and go to the restroom every 10 minutes. I get severe everything and I basically make the bathroom into an office with blankets and pillows in the bathtub. I still have brain fog from getting glutened a week ago. I am 21 and couldn’t even go to college. I am doing it online though.

    Reply

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