Gluten-Free Love Story: A Celiac Family Survives Together

celiac family

Dude Note: I was going to blog today about Dr. Agatston, the South Beach Diet guy. He is on this big media tour and after his embarrassing stint on the Today Show Friday, he continues to spread garbage, but after a lot of anger over the Today Show segment, I thought it would be a good day to spread some love. Remember…love and gratitude is what it’s all about.

This Gluten Free Love Story was lovingly submitted by Amanda

My love story has several different levels to it.

It all started in 2008 when I discovered that I had celiac disease. I was devastated and relieved all in the same moment. I finally had a reason for all the disease I had felt for many years, and yet I was about to embark on a life long journey of restrictions and having to be more than a little careful.

The first night of going entirely gluten free (the day of my scope), I was feeling very sorry for myself and very apprehensive. My husband, Arthur, took on a “no big deal” attitude and started cooking and baking with a fury.

There were so many failures in those early days of trying to figure it all out, but there were also many successes. More importantly, having my husband on board and supporting me 100% made it all okay in a very short period of time.

Fast forward to October 2009 when our daughter dropped from the 85th percentile in weight to the 1st. She was labelled failure to thrive, had no muscle tone and was severely protein deficient. She was 2.

She hadn’t gained weight in more than 10 months (literally not an ounce). After months (close to a year) of my feeling that something wasn’t right, it officially wasn’t. She was diagnosed with celiac in January 2010. The first month she went gluten free she gained 8 ounces – her first weight gain in a year. She’s still tinier than average, and sometimes battles fatigue, but she is no longer failure to thrive, and is a happy gluten free 5 year old.

Fast forward to March 2012. My son had been tested before but now, at 5, we were starting to notice some familiar symptoms. Exhaustion, bloating, sore tummy, bags under the eyes. I opted to get him retested and just after his 6th birthday, his blood test came back glaringly positive. He was scoped in April and officially diagnosed. He went gluten free that day and hasn’t looked back.

We are a family that is 75% celiac. Three of us avoid gluten at all costs and the other supports us like no other. My husband is the grocery shopper – that makes him the label reader, the hunter of new products, the one who doesn’t buy from bulk sections despite it being cheaper. He’s the one that does 50% of the cooking that keeps us safe.

My husband has no allergies at all and yet has embraced our food allergic life as though it were his own.

We survive together as a family and that, really, is love.

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15 thoughts on “Gluten-Free Love Story: A Celiac Family Survives Together”

  1. Amanda,
    First of all, awesome pic of your family!!!
    You all look so happy.

    Secondly, kudos to your wonderful hubs for being such a caring partner.
    He sounds much like mine and they are truly “good guys”. Lucky us!

    Thanks for sharing your lovely story and for showing others that all hurdles can be jumped with love and patience. While none of us really “wanted” this disease, early diagnosis ensures that your children will likely grow up strong and healthy.

    And that’s all that matters. 😉
    Best wishes to you all.
    Cheers!

  2. Celiac Mindwarp

    That really is a stunning photo, what a great team!

    You have a lovely story here, and well done for spotting the symptoms in your children. Your man sounds like a fantastic one.

    Good luck with the next stage of your family journey

  3. Irish, Rachael and Mindwarp…I truly appreciate the comments. I know these Love Stories aren’t as controversial or sexy as some of my other blog posts, but I simply love these stories and I think they are just as important.

    Again…thanks so much for your contributions!

  4. I realize that people arguing and getting hot under the collar may be a bigger draw 🙂
    but honestly, I think stories like this are more important.

    They are life-affirming and show real celiacs living happy, normal lives.
    (yes, I said normal.)

    They show how to overcome adversity and get on with the business of living.

    I love reading them and I hope people continue to send them to you.
    More! more!!
    Just my two cents 😉

  5. Celiac Mindwarp

    I love that the stories are life affirming for celiacs and NCGIs, and I love that there are so many people with amazing relationships. We so rarely hear about good relationships, it is brilliant to see.

    I get angry with

    1. Mw, my buddy 🙂

      You know that whenever I write or say the word “celiac”, it means
      NCGIs, too (because I think of us all as one big happy Gee Eff family)
      In the future, I foresee a world where there will be no “separation”— it will just be “gluten intolerants”. (because that’s what we all are, essentially)

      or “people who lived through gluten head hell and lived to tell about it ”
      ( but PWLTGHHALTTAI is a pretty clunky acronym. We’ll need some PR peeps to work on that one) 🙂

      1. Celiac Mindwarp

        Yes, I do, because I know you get it 🙂

        I like to say it mostly so any newbie NCGI folks feel welcome 😉

  6. I have really enjoyed all of your gluten free love stories. I have not commented on all of them, but have read them, and they are a great reminder of how much of a difference it makes to have supportive spouses, friends, children, etc. on this Celiac journey. Thank you, Dude, for not talking about the South Beach Diet guy today.

  7. Can’t waste too much time with others who trash Celiac and gf food and such. Its been ratings time and all they want is free promotion. Don’t get sucked in by the BS. Whats that song? Love is in the air….?? lol Have a good day everyone. Thanks Amanda for sharing.

  8. Thanks for sharing your story. I have been gluten-free all my life. I was extremely fortunate to have an incredible pediatrician who diagnosed me accurately almost 50 years ago! I am so thankful I didn’t have to go through years of suffering. I’m sorry you had to, but thankful you now live the gluten-free lifestyle 🙂

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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