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17 Comments

  1. 1

    Luna

    Two replies:
    “Do you know anybody—no, really, ANYBODY—who would dare to secretly feed a vegan an animal product that their body can no longer process?”

    Yes. My in-laws LOVE to do this to me. And actually, you seriously wouldn’t believe how many people do this to vegans. A friend of mine was vegan for 33 years. Someone gave her real bacon and told her it was a new vegan kind. She was so sick.

    “Not to be bitchy, but my Father-in-law is a recovering alcoholic and I have seriously thought about mailing him a 5th of scotch for his birthday.”

    YES. My father-in-law is the same, and he kept bringing gluten food into our house. My son is celiac and autistic. My FIL would bring in gluten *candy*! Finally, after he dropped on the floor and didn’t know (and we found it, thank god), my husband confronted him. He got all defensive about it being in his jacket pocket. My husband said, “Dad! If I brought liquor into the house and put it in my pocket labeled “YUMMY SHIT FOR GRANDPA!” and you found it and tried it, you’d kill me for pulling that shit. That’s what you did to our son!”

    Reply
  2. 2

    Jazz

    I love the rants. Prior to my diagnosis much of my family thought I had an eating disorder because I was always so sick I could not eat much when out with them. Then came the weight loss and now a new group of eating disorder murmers. So much of the info in these rants is so relatable, from inlaws to boyfriends, to those damn holliday gifts we used to enjoy and now dread getting in the mail. Even if they dont care to support us they need to understand and respect us and the fact that this disease sucks for us more than it inconveniences them. Thanks for sharing everyone.

    Reply
  3. 3

    Dave Barber

    “There is nothing better than sarcasm well played,” I love it.

    Celiac and NCGS are the Rodney Dangerfields of autoimmunity. They get no respect, I tell ya!

    Our time will come indeed. When all the normal stiffs have heart disease and Alzheimer’s, we’ll be chilling on a beach somewhere drinking our gluten free beers and eating our purple sweet potato french fries that took us all day to make but they taste damn good so we don’t mind spending all the extra time out of our day to prepare them even though we probably could’ve gotten a lot of other things accomplished if we could just tolerate a little gluten. But we can’t, so….

    Yeah.

    Reply
  4. 4

    Claudette

    Hi everyone.

    I want you all to know that hopefully change is coming – though it may come slowly. A colleague of mine and I have made the decision to apply for grants to study bullying in relationship to food intolerances, including celiac sprue disease. This is not exactly my research area (I’m in child maltreatment and parenting) but my colleague is a bullying expert and hopefully in tandem, with his research background and my combined research ability and “insider status,” we can show exactly how detrimental this crap is, compounded with all of the medical crap we already have to deal with. We plan on studying both children and adults. We recognize that the bullying we encounter is likely to be different between children and adults, but we feel both stories need to be told so that we can better estimate the mental health toll that celiac/NCGS has on all of us.

    I will try and keep you all informed of what we’re doing. I’ve been doing a whole boatload of advocacy (including b****ing to the head of food and beverages for a major worldwide hotel chain) on our behalf, and I will continue to be a “gluten bitch” (in a good way) until we’re taken seriously.

    Reply
  5. 5

    MJ

    All disturbing, and Rant #4 especially so (#6 is right there with it). May I recommend a great book called “People Skills”. It discusses cutting out the negative people, people who harm you, from your life. It’s a wonderful read.

    Reply
    1. 5.1

      naya

      love #9. would you tell a person with cancer , I couldn’t do the radation thereapy just kill me now! im in middle school. that means pizza parties, ice cream, cake, cupcakes , cookies ect. had celiac since I was 5. Ive been told 5 that no one can live without pizza. guess what?! I CAN AND I HAVE FOR 7 YEARS. ive never said that. I just say its hard. celiac gets easier after a while.

      Reply
  6. 6

    Claudia

    I thought I was reading about myself. Now my family and doctors do believe that I have Celiac disease, but its the folks outside my nuclear family that do the things like those in the above rants. “Oh I forgot, you can’t have this–sorry” or “Can you eat fruit?” and many others. I am labeled as “picky” as I am sure all other Celiac folks have experienced. We just can’t get any respect I tell ya! It really does help to rant—it clears the soul. Everybody rant on and may the force be with us lol!!!

    Reply
  7. 7

    Gloria

    Rant number 5. The rabbits are multiplying. Look out world. We are getting pissed.

    Reply
  8. 8

    IrishHeart

    oh man, I cannot decide which of these asinine comments is the most ridiculous thing I have ever heard, but I would offer a comeback for some , just in case someone equally ignorant should make it again:

    “Oh my god, I like, couldn’t LIVE without bread. Like seriously. Life wouldn’t be worth living.”
    (Like, how shallow and empty is YOUR life?)

    “Are you anorexic or something?”
    (Are you an asshole or something?)

    My mother refuses to acknowledge it is genetic as ‘that would reflect badly on her’
    ( yeah, cuz, it’s “all about you, Mum” and that’s a good reason to treat your daughter like dog poo)

    ‘if you wanna be different, this is what you get’.
    (well, I’d like new parents please, because you guys really suck at this)

    Seriously, to the person who wrote rant #4, if your parents are really
    saying and doing these things to you, well, they are horrible people. I’m sorry. I’d love to have had a daughter to pamper.( and if you want to be adopted, even at this late stage, you can come live with me LOL…, where you will live in GF safety and you will never be made to feel like having an autoimmune disease is a punishment. :)

    Seriously. this absurd behavior you are all relating to us just infuriates me no end. And I hear it often from celiacs and I do not blame any of you if you cut off contact with these selfish, ridiculous people in your lives. In fact, for your health and sanity, maybe you should.

    To the college student who is not eating all day long, eats and gets the big D?

    —well, your boyfriend’s “IBS” is probably gluten intolerance and if he would go GF with you, maybe, just maybe the continual glutenings you are suffering would stop. Stop going out if it makes you sick. Just for a while –until you can get a few weeks under your belt. Only you can make this happen. You need protein. You can’t not eat all day long or you will never feel well, kiddo.

    You also said: “My mother tries to help me out every month by buying me fifty dollars or so worth of gluten free food. I appreciate it greatly, and it’s honestly more than she should be spending in the first place, and so I can’t tell her that that’s not what I need. I need healthy, fresh food to heal. But she can’t afford that, and neither can I.”

    This does not make sense to me, honey.. If she can give you $50 a month’s worth of GF foods, why not just say “Mom, I’d rather have the money and buy fresh food if that’s okay”.

    Fresh food is CHEAPER than packaged GF stuff, hon. Time for you to change a few things in your life so you can heal. Otherwise, this will just go on and on and on. You’re in charge here. Lots of college kids do this –celiac and all–and so can you!
    Best wishes.

    Reply
    1. 8.1

      Anna

      Hi, I was the one who wrote #8 and I just want to say thanks for the response! I wrote that a month or two though, and thankfully I’m doing a lot better now. I’m finally making good money at work, managed to get all my own cooking utensils, and found a few good places I feel safe going out now.

      Unfortunately I’m still dealing with tummy problems that I think go a little farther then gluten intolerance. I’ve just gotten appointments with a whole new team of doctors though and I’m very optomistic. They seem to trust me when I tell them there are problems, and don’t question my gluten intolerance.

      I still have to deal with a lot of ignorance from people though, and I can definately relate to the people being told “oh, I’d did without bread!” Ugh. I do miss it occasionally, mostly in social situations, but it’s really not that bad. I’d rather be healthy then have bread. I’ve learned to not bother to explain it to anyone who isn’t close to me or isn’t serving me food. It’s just too much of a headache.

      I did get from my mother the other day: “so are you still doing that gluten thing?” My response was, yes mother, I still have a gluten intolerance, thank you.

      Reply
  9. 9

    KateJ

    I think I know all of these people (and might be related to a couple).

    I’ve been diagnosed 5 years now, and in one sense that time has flown by – but at the same time it feels like gluten free is such an integral part of my life that I can’t remember the time before (but the photos of the stick figure with the big belly prove there must have been a time before). Apart from in those weird dreams (you know, the ones where you scoff half of a family sized cake and then remember you have CD) I stick to the diet and stay in good health.

    I’m glad there are places like this where we can sound off about those whose intentions are generally good, but whose ignorance or arrogance make our life difficult.

    Thanks, GD

    :-)

    Reply
  10. 10

    thetxlady

    For rant #8:
    Yours is one of the rare situations where really press on someone to apply for food stamps! Not eating at all causes even more damage to your system than this disease. Baked potatos are my stand by food.
    Price matching especially on produce drastically decreases my food bill. $1 carrots, broccoli, apples, pears…whatever is in season helps a great deal. Nutella & peanut butter travel well, baked potatos can pretty easily be found without contaminant exposure. Choosing not to eat out of fear isn’t surviving…its killing yourself! A good boyfriend SHOULD be upset at that.
    Mom trying to help can put money on a grocery store gift card for you to get fresh veggies. Trying to help is more than most of us get as “support” from our families & a little gratitude goes a long way with this disease. This disease isn’t something we chose, but attitude about it is something we do have control over. Have you even considered that fatigue, diahrrea & depression are side effects of not eating a proper diet? I know when skip meals my body goes into over drive even when I give it safe foods. Why try to counter a mal-absorption disease by feeding your body LESS?

    Reply
  11. 11

    Lauren

    I am sorry to hear these stories. And I am very glad my parents and in-laws are so kind to me about my celiac disease and its necessities. I am curious (not in a blaming way but in an actually curious way) how many people who have difficulties with their family members and/or friends regarding their disease have asked for some time to talk about their disease and explained in full the actual mode of action of celiac disease from a scientific standpoint? Do your family members understand how gluten gets from your mouth to actually end up causing the mucosal destruction and villous atrophy, via T cell and B cell activation? Again, this is not a blaming question, I’m simply curious if people get this time in the first place if they ask for it, and how many people explain the disease more fully than the dietary restrictions/symptoms, i.e. “gluten is bad for me; if I eat it I get diarrhea, etc.”. Some people I know will not respond to a scientific explanation and those people…I have no words.

    Also, #4: Are your parents religious by chance? It just sounds a lot like a home-school textbook I came across once where diseases of the body were described as punishments for the sins of man. Besides that, they sound pretty terrified of celiac disease. To you and to everyone else struggling with this, I am truly sorry people have been unkind, unfair, and caused you pain. I think the only thing that has helped me deal with difficult people is trying to keep in mind that anger is just gussied-up fear. People are afraid of change, of not understanding, of being affected by the same thing, of not being able to deal with something adequately, or maybe because it brings up their own health issues that they are afraid of and they see someone else taking something that can hurt them seriously and they feel guilt that they aren’t taking their blood sugar or their triglycerides or their high blood pressure as seriously. And some people are just dinks. :)

    Reply
  12. 12

    Janet

    Reading these rants are making me feel SO much better! It’s terrible, but seeing that other people are struggling with the same amount of intolerance and lack of understanding, and even much worse, than I am is heartening. It’s giving me some motivation to trek forward and not to mope around! Social situations are always bad, and since I’ve changed my diet to exclude processed foods and preservatives as much as possible, eating out or getting takeaways has become near to impossible. Difficult if you are part of a family that focuses all social activities around food! Actually, my parents are fine – my mom and dad cooks food like meat, vegetables and rice. But my in-laws are big hamburger-and-chips people, with a love for pizza, croissants and other baked goods. I’ve learnt to make sure that I have some nuts and seeds with me whenever I eat with them, so I can add these yummies to the bland salad which tends to be my only food choice. Don’t get me wrong, I love salad!! I’m getting known as the salad-queen! But some people tend to view salad as lettuce, tomato and cucumber. And of course cheese if they eat it (I have the double-whammy, I developed lactose sensitivity after going gluten-free). My husband is very understanding, but is still struggling to get with the programme and adapt – but he is trying! Anyway, I need to get back to work. But thanks for sharing these rants!!

    Reply
  13. 13

    Connie Huggett

    Nice! Just noticed my rant made it at #1, but reading all of the other rants makes me extremely sad :( I hope for the day we get treated equally to peanut and lactose patients….

    Reply
  14. 14

    Amanda

    Love the rants , glad to know I am not alone . Personally , I am tired of restaurants claiming gluten free status because they offer salad . I went to a Zoe’s kitchen and pointed out that on their printed menu the rice pilaf was listed as GF but the menu board above my head stated it was not GF. No one who worked there had a clue. And don’t even get me started about my family who forgets that I can’t eat gluten.

    Reply
    1. 14.1

      John

      Speaking of restaurant fail, there’s a chain of Dutch pancake family restaurants in my area whose website proclaims “Gluten free options now available”. This links to a menu with the ff fine print at the bottom:

      “Please note – The nature of our open concept kitchen presents possible flour cross-contamination and therefore
      possible gluten exposure. We are confident that the dry gluten free Pannekoek mix does not contain gluten but as
      our open kitchens do have gluten items present, the gluten free Pannekoek and other suggested menu items are
      not recommended for celiac disease sufferers or those customers with a moderate to high gluten intolerance.”

      So where are the GF options they promised? They can’t have it both ways. It’s like the pizza places that sell supposedly GF pizza.

      Reply

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