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22 Comments

  1. 1

    Adrianne Gentleman

    No 1 Go mamabear

    No2 My husband was very similar to yours, that is until I spent a week in bed after accidentally ingesting gluten. Now he’s more careful of contamination than I am.

    No3 Horrible isn’t it, and yes you do get used to it

    Reply
  2. 2

    rob

    I work in construction , try explaining celiac disease to a bunch of construction workers, after the laughing stops they still dont know what im trying to tell them,, anyway about 10-12 times a year the boss springs for lunch, usaully around the holidays, and most of the time its pizza or some kind of pasta dish which of course i cant eat, i’ve mention to him a couple of times my situation but it seems to go in one ear and out the other, i look silly just standing around not eating, of course i get asked why im not eating and i tell them the reason why but it keeps happening, how should i handle this? If i go over his head and tell an administrater i’ll look like a crybaby

    Reply
    1. 2.1

      Tami

      Rob, give them a bottle of rat poison and ask them to eat it… When they say no ask them why… Then say the same applies – gluten is like poison to you so why must people try pressure you into eating it? People don’t pressure diabetics into eating a slab of chocolate so it should be the same for us celiacs…

      Reply
      1. 2.1.1

        The Gluten Dude

        That’s awesome Tami…

        Reply
  3. 3

    Tami

    no 1 – Mama Bear – Your kids are lucky to have someone like you to support them!! No child asks for this, people need to learn, even if you have to beat them with it, that they need to be sensitive to their needs.

    no 2 – the husband… Mine thought that I was just going on and on about it cause I liked talking. He had his 30th birthday bash, we had a braai (what you call a BBQ) and he used the same utensils on my meat as on someone another person’s. 2 problems their marinade contained gluten and fish. so I swelled up, threw up and was confined to my bed & bathroom for a few days. He learnt his lesson!!! Because I was literally out of action he had to clean up the mess of 30 people (and believe me it was horrific) and on top of that he had the worst hang over of his life. I heard him throwing up a few times but he felt so bad that he had made me sick that he only had a nap once the whole house was clean. It’s been 2 weeks and still feel like a bus has hit me but hey I’m looking on the bright side, he learnt a lesson.

    no 3 – we’re all there right with you. You walk past a bakery and envy everyone actually getting something. People bitch about their weight and most of us are trying to gain. Been at it for 18 months and sometimes I still shout **** out loud when I see the word gluten on something in the shops, but it does get easier as time goes by, your mind shuts out the things you’re not allowed and it becomes a way of life :) and if someone doesn’t understand how you’re feeling compare what you go through to being on chemotherapy, they soon shut up :) Also just remember you have an online community to turn to when you need the support…

    Gluten Dude – thanks for posting the rants :) makes my horrid Monday far more tolerable :)

    Reply
  4. 4

    J

    #1 hope you lawyered up too. That’s just wrong. As a future teacher myself, its unethical and I believe illegal!!!!!

    #2 he may need to go to a doctors appointment with you so he can learn. Get him some info so he can read about it.

    #3 it gets better. Just takes time.

    Reply
  5. 5

    Donna T

    To all three rants: It is a shock, it is complicated, we are a community and understand your frustration and pain. It would be worse if it were my child and not me. Mother’s turn into lions when it comes to their children. You will be your child’s advocate and will have a close relationship your whole life through. My husband, who is not gluten free, has taken up the GF diet at home since we have a GF kitchen and he says his blood pressure is down and he’s never felt better – lots of natural foods and less restaurants and packaged foods. I am on my second year of having celiac and food is medicine for me and has lost it’s power over me. There are many good recipes, bakeries, and prepared foods available. It just takes time to find what you prefer. I’d recommend a support group to inform yourself and the internet is wonderful. Yesterday my adult children asked if my brownies were really gluten free. I can see the light…

    Reply
  6. 6

    Connie

    #1 – go mamabear! My mom was a pit bull in the schools too, from when I was first diagnosed as diabetic. I still remember the teacher that didn’t believe I had the kid diabetes and let me go all the way to passing out. Sigh.

    To all of them, all I really want to do is give each of you a hug! We all have to do this together. That’s why I like Gluten Dude’s blog so much – its that virtual acknowledgement of a hug. :-D

    ::hugs::

    Reply
    1. 6.1

      The Gluten Dude

      I feel the love Connie :)

      Reply
  7. 7

    Carol

    Go Mama Bear! As a teacher, even pre-diagnosis, I was very careful about my the kids in my class and what their allergies were. We’ve had to deal with peanut, diabetes, and now my own gluten-free-edness. If a parent or a kid tells me that they are truly allergic (actually we get notification a the beginning of the school year through the school nurse) the class as a community learns to deal with it properly. I’ve had diabetic kids in class whose friends know what to look for. I’ve had nine year olds know how to read labels and what to look for. I always double checked on them. That teacher should have been fired and he/she/it does not deserve a job working with children. What a stupid powerplay…because, to me, that’s what was going on there.

    Hubby and fork..been there, etc. Now we are working on the butter and not crumbing it up.

    Reply
    1. 7.1

      Jennifer

      I gave up on the butter issue. We now keep 2 tubs of butter in our fridge. One to eat with gluten foods and one to eat with gluten free foods. I keep a sharpie in the kitchen to mark the tops of the containers. We do the same with peanut butter and jelly. This way I never have to be suspect of crumbs i see in the respective containers. If there are crumbs in the gluten free container I am confident they are gluten free crumbs!

      Reply
  8. 8

    Sarah

    I was diagnosed about 8 years ago and spent the first year moaning and complaining and being negative. Maybe it was a grieving process? I now don’t miss any foods I used to eat because I feel sick at the thought of what they do to me, and apart from having to plan and think ahead, it’s not so bad. Definately worth it to feel human and pain free! I hope every Celiac can get to this point too.

    Reply
    1. 8.1

      The Gluten Dude

      Yep…the idea of the rant is to let it out and hopefully move forward and try to focus on the positive. But dang…it feels good to rant sometimes.

      Reply
  9. 9

    Christy

    Mamabear,
    I literally just cried reading your vent. We have been trying to have my son (8) diagnosed for months with Celiac. Unfortunately it is very hard to find a doctor that will run the right tests and get to the bottom of everything. So in the process I have just decided to make him gluten free. We are GF as a household (thanks to my amazing hubby’s support) He was having so many of the symptoms you described including ones that looked like ADHD and dyslexia. Extreme fatigue etc.
    We started at the beginning of summer so he hopefully could get used to everything before school starts. Well, we were in Target today and a nice lady at the bakery asked if he could have a cookie. He looked at me, then her and said “I can’t have it” Of course she gave me the look that said “What a mean mommy” So I very politely just said “He’s allergic” Then I turned around to see him hiding behind and display and crying. My heart broke into a million pieces.
    It is so much harder for them. They have so many other emotional issues to deal with at this age. Being different through food is just too hard for them to deal with. As far as I’m concerned there should not be any “extra” food offered at school. The percentage of kids with food allergies now is so high. None of them should be put through the social and emotional consequences of not sharing in a class activity.
    You are a far better woman than me. If that happened/happens to either of my children (daughter has a milk allergy) I might find myself behind bars. It’s barbaric, heartless and ignorant that an adult would treat a child in such a way. In fact, it’s child abuse.

    Reply
  10. 10

    Maggie

    Sorry to be a partypooper, but the celiac rants sound like a bunch of whiny babies. Children take their cues from you. If you feel sorry for them, they cry when they can’t have cookies. And age 7 is not too early to teach children to stand up for themselves. Yes, that teacher was irresponsible, but so was your child. Teach your child to refuse any food you didn’t prepare. How hard is that? Be responsible yourself and teach your children as well. And don’t ever pity them for the suffering they must be enduring because of what they cannot eat. Eating a special diet is not suffering. Sickness and pain is. You think your diet sucks? Try the anti-candida regimen for a week and you’ll be grateful you’re only a celiac. Can’t eat cake? Poor you. I can’t even have fruit, never mind sugar. And I’m well. All my life I was sick. I like being well. I gave up gluten and feel even better. I like that too. Finding alternatives is not suffering, people. Want to eat out? Have a picnic, for heaven’s sake. No one understands you? That’s not their job, is it? That’s your job. No one cares whether you are sick or well? Again, your job. Be glad and proud that you have done what it took to understand your own self, and that you care enough to make yourself well each and every day. Do you know how rare that is? Choosing wellness is hard. Do it with grace, and stop the sniveling, please.

    Reply
    1. 10.1

      Carol

      Are you a parent? If you are, I hope your kids are great at standing on the sidelines sometimes.

      The rant is not about sniveling. I actually do not snivel about my GF-edness. I’m used to it and say that it is better than the alternative. As I teacher, I watch kids not able to eat this or that. They deem that not fully participating. Most kids do not want to be different, especially when the difference was not their choice.

      Sometimes it nice to go out for dinner…even for kids…never mind the break for the chief cook.

      Reply
    2. 10.2

      The Gluten Dude

      Maggie…it’s a catharsis. Sometimes you gotta let your frustrations out a bit before you can move on. I provide that venue. What’s the harm?

      Of course, there are diseases worse than ours. There are also some not as bad. What does that matter? WE deal with celiac so that is what WE discuss.

      Thanks for stopping by…

      Reply
      1. 10.2.1

        Maggie

        Sorry, Dude. A child seems to have suffered in silence for 7 months because she thought she was a victim and had no voice, and I hate that. We can’t always be there to cover for them. We have to teach them to say “No way!” with gusto and to keep their sense of humor.. My daughter is allercic to corn, so we play “What CAN you eat?” together, and name all the grossest things we can think of – worms, boogers, etc. I do that for myself and for her. We both need it. I won’t post any more here, don’t worry. But I learned a lot, so thank you.

        Reply
        1. 10.2.1.1

          The Gluten Dude

          My “Thanks for stopping by comment” was sincere in nature, not snide. Hoping you did not take the wrong way. I appreciate ALL input…not just those that agree with me.

          Reply
  11. 11

    Yasmina

    Hi,
    I completely understand the frustration. I have Celiac and Candida. My diet is really restricted. Sometimes I find it frustrating because the people who love me try so hard to make things special for me. Example my friend bought me special gluten free organic chips and made me my own bowl of salsa. There was rice in the chips (no can do for candida). No chips for me, just guilt. All these people know what’s up with my new diagnosis, they try so hard, and I can’t accommodate them because I know I will be ill. I feel straight up rude and needy.
    But they have not stopped trying ( so nice it makes me cry ).So whenever I think about how sucky it is that I can never eat on the go and I am sick of the planning, I think of my cousin who cooks dinner for ten and uses all separate utensils and surfaces for me, who also makes sure I am always the first to be served. And I think of my parents who invite me over to eat because they took the time to make a meal especially for me, or of my boyfriend who sometimes has made 4 consecutive trips to the grocery store just so I could have a treat without getting sick.
    Being Celiac sucks. Having Candida sucks. Being sick sucks….
    But, in time you become closer to those who really care to care for you, and you find out how wonderful people really can be. And over time understanding about Celiac grows.
    So every time I have to repeat my dietary restrictions (for the ten thousandth time, even though it’s only been 10 weeks for me),
    or politely (and excruciatingly) decline a kind offer, I am starting to take a deep breath and cut others and myself some serious slack because this is a pain in everyone’s a**.
    To Mama Bear: My mum and dad are like you, and even though I am now close to thirty, they are still my biggest advocates and protectors. Their resilience gives me strength. Keep it up no matter how difficult it is, you will get endless love and respect from your kidlets. Big ups :)

    Reply
  12. 12

    Constance

    I like to see a poll of people with Celiac or Gluten Intolerance who are living with a spouse who has neither of these illnesses. I want to know how many have spouses who are still being idiots, who are still making us sick (even as they say, “I’m doing the best I can!”), and/or who resent us (silently or overtly) for “disrupting” THEIR lives because we desperately need their cooperation to avoid cross-contamination. I have been so close to walking because my health, my LIFE, must come before any relationship. Then he senses this, and makes all these efforts, for awhile. Then just when I think we’re going to be OK as a couple, I catch him touching doorknobs, etc., right after eating his glutenous food. I cannot relax in my own home.

    Reply
    1. 12.1

      Yasmina

      HI Constance,
      my spouse does not have celiac. He is extremely understanding about all the restrictions that celiac has created in our home, and outside as well.

      One thing that we have done is made him his own cupboard for items that contain gluten, all the items in the house that contain gluten stay there. But mostly what has been the easiest thing to do is get rid of as much gluten as possible in his diet as well. He sometimes orders pizza, and most of the items that contain gluten he takes in his lunch. That way he still gets to have gluten, but the majority of the time the consumption is out of the house.

      Sometimes he will forget and eat chips and then bring me a glass of water, and he has touched the rim of the glass without washing his hands. This is annoying, but honestly the way I think of it is, we as celiacs are constantly aware of gluten and are vigilant about keeping it away from us, but as non celiacs our spouses no matter how considerate or caring cannot remember every little precaution at all times because it is not constantly on their minds. Nor should it be. Having to be this vigilant is extremely time consuming and stressful, i don’t want to place that full burden on my spouse. Extending my suffering to him does not make me feel any better.

      My spouse saw my health degrade to the point where I was no longer able to work, or pretty much do anything at all for 8 full months. He has seen all the symptoms and how being free of gluten has changed my life completely, he is always aware and considerate. Having said that he still makes mistakes, and it’s annoying for both of us, but he’s human.

      I don’t know your partner, but I would say that there is a big difference between slipping up, forgetting, lack of knowledge etc. and carelessness. If your partner is careless and inconsiderate of your needs, it has less to do with not being celiac and more to do with his choices and priorities. If you are not a priority for him, than he is not acting like a real partner.

      I know that this is blunt. I am not judging your partner or you. I just know that I have spent so much time suffering from illness, that I personally would not want to spend any time in undue suffering in a relationship. You’re the one who has an illness, if he is too immature to handle this and resents you for it then it may be time to evaluate whether he is mature enough to be in a relationship.

      I hope that your comment was just a rant because so many of us need a safe place to do that. But if not, I wish you all the best in managing your illness with your partner. Take care ;)

      Reply

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