Celiac Day One

I said to a nurse, "The pajamas are so cute!" She said, "You should see the ones they give to the really little kids--they have these little dogs or bears on them--so cute." I said, "I remember those! Do you think they're dogs or bears, or are they dog-bears, so each child can decide, based on which animal they like best?" She said, "You're way over-thinking the pajamas," and walked away. Actually she just walked away, but I knew what she meant.

I said to one of our nurses, “The pajamas are SO cute.” She said, “You should see the ones they give to the really little kids; they have these sweet dogs or bears on them. Adorable.” I said, “I remember those! Do you think they’re dogs or bears, or are they dog-bears, so each child can decide, based on which animal they like best?” She said, “You’re way over-thinking the pajamas,” and walked away. Actually she just walked away, but I knew what she meant.

Today endoscopy. Some other small troubled person cancel; Bubs yoink that spot pronto. So happy, miss standardized test @school. Wheee!

Arrive at hospital, Bubs/Bigfoot surprised endoscopy take place Children’s Surgery. And surprised specialty pajamas required—top and bottom. So cute, like tiny MD or off-duty geisha.

No surprises after pajamas. Results: yes celiac. Biopsy result in approx. one week. What purpose biopsy? Already diagnosed. Biopsy will show additional problem or describe severity of problem or reveal length of problem? No idea. Know nothing. Peek @report in chart: small photos juicy insides & words:

Normal esophagus. This was biopsied. Normal stomach. This was biopsied. Nodular mucosa in the duodenal bulb. This was biopsied. Congested duodenal mucosa. This was biopsied.

Hrmm? Really like GI surgeon-doctor. Ask what did you see? Answer something like, he does have celiac, as we expected and we’ll see what the biopsy results say. And when Bigfoot say I’m just so happy that now he can stop eating gluten and start feeling better GI doc face look sincerely happy, look on face is understands Bigfoot relief. Warmth.

While waiting Bubs enter recovery room, birthday party Evite land inbox. Party boy mother ask “I’ve noticed that you or Joe usually stay at parties to help with blood sugar. Would you need to do that for our party?” Bigfoot diarrhea of the fingers type back something like THAT’S NOTHING. FOR YOUR PARTY, NOT ONLY WILL WE STAY, BUT WE WILL ALSO BRING WEIRD FOOD! Anyway, grateful 1st party will be w. person sort of knows about…how is. Also grateful “would you” this case is more like “could you” because could use extra party-time driver, not “would you” like “would you have to because you guys are getting to be a total drag.”

Our

Our friends kindly took our tainted things away, but no one was willing to adopt a giant (unopened!) box of Kellogg’s Raisin Bran .

Meanwhile, put all baking books, wheat flours, Z-bars, pasta, etc. on porch, beg friends come take away.

Bigfoot executive decision is get rid of all gluten. Know some families have gluten-yes cupboard. Bigfoot overriding emotion screw Triscuits. Even though Bubs not interested Joe’s Triscuits, Triscuit crumbs maybe get on things. Joe stow Triscuits in car. Bigfoot call from porch gluten heap but don’t eat them in the car! Part kidding, part think maybe this really how gluten world works? Heard about two-toaster deal; also need gluten-free car?

I tried to get it all. I forgot the tapioca something and the xantham gum.

I tried to get it all. I forgot the tapioca something and the xanthan gum. I also forgot we only ever eat vegetables, meat, perhaps a few tiny pecks of nut, and sugarless bubblegum.

Buy Terra Chips sweet potato-beet for salty snack food. Also toss Z-bars; replace w. creepy lemur bars. Buy one million Justin’s Nut Butter peanut butter cups because love Justin’s nut butters + on sale (sack o’ 10/$3.99) + 7g CHO/cup + big, easy-spot “gluten free” label. Buy also assortment Bob’s Red Mill esoteric flours + more coconut + more almond flour. Once home, learn not all B.R.M. coconut items gluten free; return coconut items produced possibly on same equipment as wheat, get more almond flour. Then remember need special gluten free oats. B.R.M. has. Phew! Bigfoot beat.

Thank you, library.

Thank you, library.

Evening: library, book store. Magazines: Living Without and Simply Gluten Free Magazine. So far seems like useful recipes + laughable articles, or maybe cry-able articles with themes: I’m allergic to sidewalk chalk! And now I’m allergic to corn! And this bread is so crumbly! Or rub almond oil on your face as a moisturizer (if not allergic to nuts.) Smart friend remind Bigfoot This American Life episode w. Sarah Vowell essay The Journalism of DeprivationLast heard in 2004, way before any deprivation any sort occur within own home. Re-listen. Still so funny.

Thank you, library II.

Thank you, library II.

I could not throw this away. I also decided to keep the beer, because beer is not a temptation to a child (yet) and beer does not make crumbs.

I could not throw this delicious, tainted item away. I also decided to keep the beer, because beer does not make crumbs or get touched by utensils.

Scour kitchen again. Find more flour. Find stray sleeve Ritz cracker. Then remember peanut butter touched by gluten-touched knife = contaminated. Toss. Then remember chocolate hazelnut butter. Sigh. Dang. Too precious toss. Label contaminant. Bigfoot plan eat w. spoon over course few days.

Also reluctant toss toaster. Love this toaster. First extravagant post-nuptial purchase. Possible exorcise gluten, rehabilitate toaster?

Also, thing like canned garbanzo. Ingredient: garbanzo beans. Is gluten free? Or only if says “gluten free garbanzo beans,” or only if not says, “Produced on equipment that may also be used for nuts, wheat, and soy” ?

Or chocolate chips. Whole Foods brand Semi-Sweet Chocolate Baking Chips Mini warns “contains milk and soy ingredients.” By omission = gluten free? Label also says “vegetarian” and “sodium free.” But not “gluten free.” That means yes gluten?

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19 responses to “Celiac Day One

  1. Our biopsy results that we finally got today (5 areas) showed inflammation in both areas of the stomach that she couldn’t see on visual inspection and blunted villi in the small intestine, as well as the specific white blood cells and neutrophils that would be present in celiac. Thus confirming our confirmed confirmational confirmations. Sweetie had Marsh scale 3b villous blunting. Many words were googled.

    Also, good call on the eating the hazelnut butter with the spoon. Good call.

    Chickpeas and chocolate chips should be okay if they don’t list gluten-related elements. When in doubt, call the number on the package. I chatted up a nice lady at Quaker Oats the other day and learned all about how the farmers bring the oats and hominy in on the same trucks as wheat and how they can’t guarantee that Mother Nature didn’t blow wheat pieces into their oat crops.

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  2. He’s so lucky! My family would never have gone GF. I had to label my own jars and they’d still end up crumbed.

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  3. All of this is perfect. You will be fine.
    My husband lovingly eats mostly gluten free with me when we eat together.
    Tip: corn pasta simulates real pasta way better than rice pasta.
    Rice noodles are a staple in our house 🙂 Frozen UDI’s GF bread is my favourite “go-to” when I can’t get to the gf bakery.
    The ONLY oats I buy (and my stomach can attest to this) is one brand. But again, you have to experiment (unfortunately)

    I’m interested to read about your transition into my world. It’ll suck and it’s so damn expensive but in the end, it’s all worth it. You’ll get the hang of it and learn what to be strict about and what to relax on. Labels are confusing as is the severity of your sons celiac.

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  4. Kay T.

    Scully answered my question as to how high is the risk for miniscule crumbs to contaminate something – evidently it’s something that only time will tell.

    Please don’t throw out your beloved toaster. Not only might you find something GF to toast, but it has sentimental value. B will be going away to school in 7-ish years which sounds like a long time, but isn’t really. I’m allergic to coffee but am happy I didn’t throw out my wedding gift of a Mr. Coffee when I have house guests who really want a cuppa first thing in the morning.

    Hang in there and please give us updates on your D status and J’s current health stuff.

    P.S. So sorry to hear about the gut wrenching situation with your dog. I’ve taken to spending my meditative morning time to beseeching the Fates to give you guys a break. Hugs.

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    • Katy

      Thanks. We’re permanently sad but everyone seems to have compartmentalized the grief for now. Maybe it’s a blessing to have the celiac as a distraction?

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  5. Joyce

    You are such a great Mom!!! So sorry about your dog. I lost mine 2 weeks ago and am still reeling from it. Really hope you have smooth sailing for a while. Take care.

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  6. Reading this was exhausting. I would be in terrible shape if I had to go gluten free. Which is a strong possibility, given all my GI issues of late. I hate cooking. I hate recipes. I’m so tired of reading labels just for diabetes crap, I am utterly annoyed thinking I would have to read them for something else as well. Ugh. I am having a bad day, apparently :-/ Sorry for being a downer. YOU, however, are an upper! Keeping your beer is fair. NO ONE could take away my wine. I would cut them.

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  7. Susan

    My type 1 daughter (age 8 almost 9) has also had celiac for 2.5 years. It’s tough but it works out. When your family looks back at this time, they will remember more sadness about your dog than about this new diagnosis. However, I can see how hard it seems, one more blow in a series of blows, especially with the Trial Net results.

    Good luck with everything.

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  8. Anonymous

    Yes most GF bread is unimpressive. Unless you toast it in your new gluten crumb-free toaster. Or make grilled cheeses. I end up making way more quesadillas w corn tortillas than sandwiches. School lunch needs to be revamped. Why is sandwich central? Most bread in the store is disgusting- gluten bread included.
    Too bad I end up giving my kid way too much processed meats. Salami is stand in for sandwich and is salty/processed enough to not give him food poisoning.
    For perfect cakes, cookies, and the GF stand-in cupcake for bday parties, order Better Batter gluten free flour blend online. Got that tip from Glutenfreeonashoestring.com . Her stuff is NOT diabetes-friendly, but that’s what insulin’s for. My kid usually has the best tasting dessert at a party. It is the shit.

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  9. Sorry that was me above. Also, another sad part about celiac is having to avoid french fries fried in same vat of oil as breaded things- like those tasteless chicken tenders that are everywhere. Seek restaurants w dedicated fryer. Not that you need french fries. But sometimes you do. Oh, and to make chicken tenders, throw some rice chex or GF corn flakes in your food processor. Perfect bread crumbs.

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  10. Amy

    Will you amend the name of your blog?

    I admire how you responded to the news. It is good to now know how to help him get back his zest for life.
    You are a woman who uses her resources–library, friends, front porch, etc. I expect Bubs will do well.

    Since you are also curious, I hope someday you will write about the whys. My family only manages T1D, but I have a neighbor/friend just diagnosed with it plus 2 friends recently dx with Crohn’s. WTH is going on in our immune systems?

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  11. Glad you got the diagnosis, even if it’s not a good one. I’m sure you’ll do fine eating gluten free. I tried it for a week this year (wrote about it) and it was difficult. But I found a lot more options than I thought I would, and that made it less difficult than I thought it would be. I can also tell you that the Udi’s bread while super-expensive, is very good. Good luck!

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  12. I hope a future post tells us how quickly/in what ways Bubs starts to feel better. That would be a fun, uplifting story to read. Meanwhile, I’m convinced I will develop celiac disease too. Once enough of my diabetes friends have it, I assume I’m just a ticking time bomb.

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