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32 Comments

  1. 1

    GF and more

    New reader here, celiac diagnosed 3 years ago this month. Also dairy/casein free, vegan (by family upbringing). I can’t say how happy I am to have found your blog – I read all the back posts for the past few months on the same day!

    This post resonated – I’m fortunate to have a family that generally tries to understand and show support for my world as a celiac, but – as your daughter so wisely said – it’s a whole other ball game to have the pressure of doing it for one’s health with perilous consequences if there is a slip-up in cross-contamination etc. I was glutened a month ago, and I know my mother felt absolutely horrid each minute as I was getting over the bout, thinking what it could have been, could she have done something, etc. On my end, I felt horrid putting my family through this.

    I wonder, how do you handle going out amongst company? I don’t eat out at restaurants at all for concern over cross-contamination, supplier chain handling of ingredients, etc. (I’m extremely sensitive to even a speck). Hard with immediate family, but doable. But where there is an occasion with friends or extended family, not so much. We’re off to an event this weekend, and it’d be quite awkward to bring my own food to a restaurant! How have you and your family handled things like this? Maybe off topic slightly from this post, but how does your family handle similar situations?

    Reply
    1. 1.1

      The Gluten Dude

      Try not to feel guilty about getting sick. Unless you’re intentionally eating gluten, it’s not your fault. Don’t be too hard on yourself.

      Regarding your other questions, give yourself some time to adapt and then you won’t be so afraid to venture out, even if it means bringing your own food (though not to a restaurant…don’t think they’d be too keen on that.)

      I touched on a lot of these issues in my How to Go Gluten Free series some time ago. Here is a link. Hope it helps!

      http://glutendude.com/gluten/how-to-go-gluten-free-mental/

      Reply
      1. 1.1.1

        GF and more

        Thanks. I know I should feel guilty; it’s just hard when I see those I love getting frustrated. It’s been about 3 years since I was diagnosed, and while I’m good at handling things when it’s just me, it’s the ‘fitting in’ that I still struggle with. I guess it’s just time and confidence, and getting ready to venture out of the bubble as you said.

        Reply
        1. 1.1.1.1

          GF and more

          Whoops! I meant *should not*!!!

          Reply
  2. 2

    IrishHeart

    It was really good of your Dudette to take a stroll in Daddy’s shoes for a week. What a doll!

    I think she realized there is still plenty to eat–celiacs need not go hungry and that’s not the problem–but that we live in a world that is a gluten-filled landmine and that is what makes it so treacherous. We need kevlar vests! :)

    That insight she has now is so valuable! Good for her–and a real testimony to the beautiful relationship the Dude family has. You guys are all inspirational!

    My hubs went GF with me a few weeks after DX –not just in support–but because he watched me labor to make two of everything (at the time, I was still quite ill and incapacitated by neuropathy and bone/muscle pain from celiac) and –as a chemist who had worked in labs– he truly ” gets” the potential for cross contamination and felt it was too big a risk.

    But, it’s just the two of us living here.

    And it is not possible for all families to do what we did–and so, they all work together to make sure the celiac is not getting CCed. Everyone has to compromise and be aware of CC to make it work. Big kudos to the families that do this successfully!!

    Because of your daughter’s experiment, she sees that being a celiac is not just a matter of “electively going GF”–as some out there think of this GF diet we must adhere to– but that it is what keeps us healthy and alive.

    She’s a sweetheart (and an excellent writer!) and you and Mrs. Dude must be very proud! Thanks for sharing with us!

    Reply
    1. 2.1

      The Gluten Dude

      We are proud indeed…of both of our Dudettes. Thanks Irish.

      Reply
      1. 2.1.1

        IrishHeart

        you betcha, kiddo! ;)

        Reply
  3. 3

    J

    *high five Dudette!!!* You are so cool and loving to your dad. That’s amazing.

    Reply
  4. 4

    Erica D

    Loved the post. Feel so fortunate that my boyfriend is now gluten free because we live together and he’d rather be GF than deal with potential cross contamination. So he’s GF due to…laziness? Ha, it really is easier if a whole HH is a safe place, no need to double check every ingredient once it made it into the house. But, I’d never wish this lifestyle on ANYONE if they didn’t have to have it.

    Reply
    1. 4.1

      The Gluten Dude

      That’s awesome Erica. Kudos to your boyfriend for his laziness ;)

      Reply
    2. 4.2

      Else

      At home, my husband is also GF too due to laziness. Eating GF means he doesn’t have to clean up after himself. Very convenient. :-)

      Reply
  5. 5

    Connie

    Way to go Dudette! Hugs to you for being so empathetic to your Dad’s cause.

    It warms my heart every time I hear about a story like this. :-D

    Reply
  6. 6

    Vera

    Great post. Nice of her to try it for you. I’m wondering if she experienced gluten withdrawl symptoms? The fatigue and brainfog on day 3? Also, assuming she is your biological child, how often do you get your kids tested for celiac? Did they have the genetic test? Do they know they are at risk of developing celiac in the future?

    I’ll admit I was surprised by the amount of bagels, pretzels etc. being consumed in your home.

    That said, I tested one of my kids for the gene. He has it. My husband went GF for headache and random health reasons, but he’s not as strict as me. All our meals at home are mostly GF (meat, veggies, potatoes, GF pasta, etc), with the exception of sandwich bread we sometimes buy for the kids, and non-GF certified oat cereals. Frankly, my kids shun regular bread and baked goods, but when I make GF baked goods…watch out! It’s as if their little bodies know gluten doesn’t agree with them.

    So having a largely GF household has not been a noticeable challenge for my kids, and it helps to make me feel less different or deprived. I hope that by minizing the amount of gluten they consume, they might avoid developing gluten sensitivity in the future.

    Reply
    1. 6.1

      The Gluten Dude

      She actually developed an unusual symptom: she became very whiny that there was nothing to eat ;)

      Both of my kids have been tested as well. So far, so good.

      And yes, we do indeed keep plenty of gluten in the house, but I have my own space in our kitchen for everything and we’ve got our system pretty down pat.

      Reply
  7. 7

    Alissa

    What a cool kiddo, walking a mile in her daddy’s gluten-free shoes! Bravo to her for sticking it out, and for understanding how tough it is. My husband gets in moods where he goes GF in sympathy or to taste test things for me … look for an upcoming guest post where he goes gluten-free at a White Sox game with some of his buddies. It’s always nice when people can be empathetic instead of sympathetic:)

    Reply
    1. 7.1

      The Gluten Dude

      I never understood the difference between those two words when I was younger. Now I totally get it. I’ll be looking for your White Sox post.

      Reply
  8. 8

    Kristin

    Awesome job, Dudette!!! Not many have the guts (no pun intended) to do what you did for a week for your dad. Empathy is all we ask for sometimes and you walking a mile in his shoes for even a week goes so far beyond empathy – it’s inspiring.

    GD – it looks like you have a ‘mini-me’ blogger in the making!! You can see the resemblance in your writing styles and humor. I love it!

    Reply
    1. 8.1

      The Gluten Dude

      Thanks. Mrs. Dude said her personality is getting more like mine by the day. Scary…

      Reply
      1. 8.1.1

        IrishHeart

        I dunno, I am a lot like my Daddy–and he was awesome!!! :)

        Reply
  9. 9

    Wendy

    Awesome thing to do Dudette!

    My kids have been forced into some of the gfree life as we do dinners together. I won’t double cook and they often get to eat sweets I buy or bake. Many they enjoy. Not sure either though would ever try a week completely void of gluten… So extra kuddos to your kiddo GD!

    I had our youngest tested and she came back negative. I often wonder about both of the kids and well my husband too … Would love to cut it out of their diets completely and see what happens. I really do think it is not good for most people.

    Is there a recommendation as to how often you should have them retested?

    Reply
    1. 9.1

      IrishHeart

      Hi Wendy,

      The Univ. of Chicago Celiac Center says first degree relatives (parents, children, siblings) and close relatives (aunts/uncles, niece/nephews, cousins, etc. ) should be tested “periodically”–which is not very exact, is it? :)

      but this is more specific and may help:

      “Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: There is no rule for it.

      If a family member with previous negative tests experiences any gastrointestinal symptoms associated with CD, he/she should undergo serological testing as soon as possible.

      It is well known that up to 15% of the family members of a patient with celiac disease may have the asymptomatic (latent or silent) form of celiac disease, although they have positive serological tests and have the pathological changes in the upper part of the small intestine.

      It is also evident that there are at least three developmental stages of mucosal lesions (Marsh MN. Gastroenterology 1992;102:330-354) and celiac disease may manifest at each period of life.

      That is why we recommend a repeat test every 2-3 years in first degree relatives of celiac patients. ”

      In other words, celiac can “trigger” with symptoms and pathological changes in the villi at any time in someone predisposed to this disease.

      Reply
      1. 9.1.1

        Wendy

        Thank you for the information Irish Heart. Good stuff for us all.

        Reply
        1. 9.1.1.1

          IrishHeart

          I try to tell my own first degree relatives all this…but except for my amazing Mom, no one listens. :( ….they watched me almost die for 3 years. It makes me sad they do not even get tested.

          Genetics don’t lie.

          Reply
          1. 9.1.1.1.1

            Wendy

            Mine have not listened either. I do not have a definite diagnosis, but have other issues tied to celiac which also benefit from gfree. From what I have read… If I was gluten intolerant I should not have the other 2 issues. I can’t force my family, but can at least keep my kids in check for a little while.

            Reply
  10. 10

    Fred

    we are so proud of our Dudette!
    Mema & Grandpa

    Reply
  11. 11

    Diana

    What a great post. As we are empty nesters, my husband eats gluten free at home. He occasionally goes out for gluten foods. I thinks what Dudette fou nd out that having food (gluten free) and having what you want are often not the same thing. I’ve been gluten free for 15 years and I still want what I can’t have!

    Reply
    1. 11.1

      The Gluten Dude

      Same here Diana…same here.

      Reply
  12. 12

    Ochstree

    Rock on Dudette – the entire Ochs clan is proud of ya…

    Reply
    1. 12.1

      The Gluten Dude

      I’ll pass along the message…thanks.

      Reply
  13. 13

    vicki

    Loved this post. What a sweet girl for showing her support. My eight year old and I are not celiac but gluten sensitive. Very sensitive. It has been a difficult journey. So much better that we have each other along the way.

    Reply
  14. 14

    kara@kompromisedkitchen.com

    Very cute. Dudette sounds a bit sassy…I like it. My youngest daughter truly has a great compassion for the disease. She’s like a hound dog for ingredient lists and labels. If she every has a gluten issue, I think she’ll be ahead of the game. Your daughter too.

    Reply
  15. 15

    Adalinka

    You got a wonderful daughter! :)

    Reply

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