Diabetes With the Works

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DOP’s Cookies with Poison film here.

Write down before forget details of endo appointment.

Phase one: two weeks ago. Bubs always tired, never interested fun things, says I think I have lost my zest for life. Think: this is how he was before he was diagnosed. But his blood sugar’s ok. This makes no sense. Maybe he is just kind of being a pain?

Phase two: one week ago. Realize: it must be that pesky thyroid thing that’s been looming in the background! Bet Hashimoto’s arrive, ready for dance. Make endo appointment; visit phlebotomist.

Phase three: Today. Visit endo, review thyroid blood work. His thyroid’s working perfectly, but there are some other things we should explore. Endo point out Bubs not gain weight, only grow taller. Turn laptop toward Bigfoot reveal graph of BMI by percentile. Bubs slow descent.

Any heartburn? No. Gas? Bloating? No. What on earth endo thinking: child zest for life escape via farting? He just seems extra skinny because he’s growing taller. Then. Like baseball bat to face: she thinks it’s celiac. Fuckfuckfuckfuckfuck.

Always, always whole time diabetes think I am so happy he does not have celiac. It looks like such a pain in the ass, and also ignorant people think you’re making it up and roll their eyes at you. (<—Bigfoot speak from personal experience as judgmental asshole.) Also occasionally smug thinking We just don’t seem like the celiac types. (Realize, true, also used to not be diabetes types, but…?)

Next step is call gastroenterologist. This sound like very special tiny camera time?

ENDO: I’m not saying it is celiac, just that it’s something we should explore

BIGFOOT: (silent tears shoot from both eyes simultaneously. Pardon Bigfoot automatic grief laser response; back 3/4 turned away from Bubs, not notice)

ENDO: (passes tissue box) And the great news is, there’s no medication, so no side effects!

(Imply Hashimoto drug = side effects? Thought was easiest pill on earth.)

ENDO: And everyone I know with celiac, once they get on the right diet, they feel like new people—a million times better

BIGFOOT: (champion rationalizer apologizer explainer) Well, we’ve already been moving toward a grain free diet. I guess this will be just the shove we need

Think OMG Joe is going to get so skinny—unless he cheats when he’s at work. Or is that okay, as long as it’s not in the house? Or do people keep it in the house? Or do the gluten mites float through the air and poison everything. I’m just going to throw everything away and buy a bunch of chickens and cucumbers.

ENDO: But don’t stop eating gluten! We need him to continue to eat it so it doesn’t skew the test results

For real?

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41 responses to “Diabetes With the Works

  1. Jesus!!! Could anything else happen to your family right now?!?!? I would take 10 thyroid problems over 1 celiac program. Taking a damn pill every day is the LEAST of my problems, and I have never had a side effect from it. Good grief, I am pissed for you.

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  2. Ann

    That would be NOT FRICKIN’ FAIR. I know, I know, life isn’t fair. But, really, I am outraged on your behalf. C’mon, Universe, make this one easy to find, easy to fix.

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  3. Jesus H Christ, you guys have had a lot going on lately. I wish it was Hashimoto’s…I have had since age 11, so 29 years, and it is no biggie. One pill a day, blood test a few x/ year. I suspected I had celiac last year, had blood work, read a couple books (like Elizabeth Hasselback one) and had the endoscopy, which turned out to be negative. They stressed that I needed to keep eating gluten until test b/c they said they are looking for inflammation & damage. After the negative result I did try gluten free for a month anyway, to see if my stomach probs ceased. I did feel a bit better but it was challenging, like when we went to a food court somewhere & I was ravenous & had a hard time finding anything gluten free. I felt overall it required a lot of planning on my part. And from what I read, you have to be very careful b/c even a tiny amount of gluten can result in inflammation. And I agree, a lot of people think it is made-up and no big deal (the same ones who think you gave your kid too much sugar and killed his beta cells.) I’m trying to think of the up sides for you… lot more gluten free products out there now (and almond flour is gluten free!) & if it is the problem well you figured it out & he should start feeling better soon. But oy vay, another dx (maybe), another way you and Bubs and the family have to adapt. I’m sorry.

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  4. Anonymous

    Yep…for real…have read that and heard somewhere abou have to be eating Gluten for them to be able to diagnose celiac. Sorry:(:(:(:(

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  5. Th cr*p on your plate seems to increase every day. I think that it is correct that you should continue to have Bubs eat things with gluten until he has been tested. If the test is negative, then consider eliminating gluten and see if he feels better.

    I have decided to become immune to autoimmune things, but it hasn’t worked yet. If I get it figured out, I’ll let you know:)

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  6. mollyjade

    Well hell. Again. Eat all the gluten now while you still can.

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  7. You cannot catch a freaking break.

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  8. Amy

    Really don’t want this to be true. Wouldn’t malabsorption cause lows?

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  9. Mary M

    All the sympathy in the world if he is celiac. But you will survive. You are an adventurous cook already. You’ve got all sorts of recipes that are gluten free. There are so many food options out there that you’ll be OK. Really and truly.
    Get the blood work, do the biopsy, and then your readers will hold your hand and help you through the first bit.

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  10. I’m worried. Joe too. No energy. Falls asleep in the car etc. Praying for Bubs.

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  11. 2013 just flat out sucks. Here’s to hoping that perhaps it’s just puberty that has caused him to lose his Joie de vivre?

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  12. Oh… That’s hard to add to your already full medical plate.
    But youre not alone! I have celiac and have been gluten free since I was a teenager. If that’s what it is, I’ll help you. It will be way less hassle than the D stuff, I promise.

    Helpful hint: What was confusing for me at first was answering doctor’s questions about stomach aches because I thought/understood that having a stomach ache or pains was 100% normal and that everyone had a stomachache all the time, so it made it hard to explain to the doctor. Like I’d say, my stomach is fine, because fine=normal amount of stomach ache, same as always. Just a heads up to consider how to phrase questions when talking to him.

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  13. He’s a kid. A kid who just started a new school year, and is going through the obligatory September initiation (and is explaining diabetes to a new crew, to boot). Looking back, I probably had symptoms of celiac every September from 1982 through my senior year of college in 1995. I don’t have it. Not everything needs to be medically explained.

    But if he does have it… crap.

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  14. Pam

    I’m so sorry this has been added to your plate. We participated in this activity 2 years ago…blah-ness, not growing, but with stomach aches too. Labs, gastroenterologists, all along assuming celiac. Squeezing in every gluten-laden favorite before the endoscopy was oddly fun. The procedure was nerve-wracking but in retrospect not a huge deal. For my kid, it was lactose, not celiac, for which I am grateful. But bottom line, once we addressed the problem, she perked right up. Hoping that you at least get to the bottom of this with ease.

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  15. Geez Louise! I don’t have magical words to make you feel better but you are in my thoughts and I just sent you a big mental hug. xo

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  16. “gluten mites float through the air and poison everything.”
    I think you need to sell mugs and tshirts with your quotes on them.
    and yeah, sometimes I get the eye roll and people not believing me when I say I can’t eat gluten. It’s a love hate with the new “gf fad diet” out there. It benefits those of us who have no choice but then we get categorized as freaks.
    I do hope it’s not celiac but you also have a lot of people who can help you weed your way through the crappy gf stuff out there.

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    • On behalf of people (like my mother) who are currently eating gluten-free because it’s the latest fad, and are therefore diluting the legitimacy and respect that celiac really deserves, I apologize.

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      • I don’t take offense. If someone questions me I tell them I have celiac disease. I actually quite like that it’s a popular fad diet. The availability of products is growing and that makes my life better. It also, in a weird way, educates people who would otherwise not know what gluten is.
        double edged sword I guess.

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  17. Gah!! Fingers crossed you don’t have another thing to pile on your full plate. I know people talk about it like the worst thing that can come up, but it really is manageable. It sucks to have something else to think about, but you get in the swing of things and it becomes easier. ps we DO have some gluten in our house to keep our grocery cost down for me and my other son (sandwich bread and frozen chicken nuggets). We have one gluteny shelf in our pantry, and two toaster ovens on the counter. Everything else just gets cleaned well and I don’t worry too much about gluten mites (I don’t have airborne things like regular flour).

    Robin above is so right! There were so many symptoms that disappeared in my son after going gluten free that we never realized existed because they were just normal to him. He told me about 6 months later that he felt good and that he’d always “felt blahhhh before”. As his mom, I saw his personality and zest for life make a full 180 after the diet change… only part of it was actually just his personality. He still looks like someone with no zest to outsiders. :/

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    • Katy

      I’m sure it varies (YCDMV) widely but will he start to feel better as soon as he stops eating gluten, or only once his villi start to heal? When I told him he would feel better soon he said (flatly) “Wow. Great.”

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      • It took him a while. STARTED feeling better fast, but it actually took a full year before his blood work showed in-range numbers. His were extra high at dx, high enough that they didn’t think a biopsy was necessary. His gastro put him on some probiotics and that really helped too.

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  18. We continued feeding Sweetie gluten until two days before her endoscopy. I wanted to make sure her bloodwork and scope showed celiac so we could get a definite diagnosis and call it done. They don’t have to get scoped again after that. And the bloodwork will get drawn annually.

    I immediately did what you’ve done – assume we would all go GF in the family, but after talking to everybody in the DOC who deals with this and with my own CDE, we decided that a blended family makes a lot more sense. I took all the gluten items out of the pantry and put them in a separate cabinet and made a gluten corner of the kitchen with the toaster and breadbox. 3 of the 4 of us still have gluten at breakfast and lunch, but dinner is gluten free (a tip I heard from 2 different people). So I’m converting my dinner menu into all GF. I split my bakeware and cookware and bought a few new items for Sweetie’s food – new skillet, new toaster, etc. I labeled butter and peanut butter and such with red duct tape to remind me not to stick crumb-covered knives and spoons back in the jars, etc. We’re only a week in, but I don’t think I’ve contaminated her environment so far. Hard to say. But I’m doing my best. The 19 month old is a wheat beast – shredding toast and goldfish and tossing them everywhere like confetti. Keeping his gluten kyrptonite snacking confined to his booster seat at the table has helped.

    She did lick the kitchen floor near the gluteny dog food bowl though. Sigh. You do what you can. We see a doctor for follow-up later this week and will see a nutritionist at the end of the month. My own CDE said that lots of GF replacement products make managing BG a little harder because you’re replacing whole wheat with rice flours and such which are low in fiber and higher in sugar. Of course, my little celiac isn’t type 1.

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  19. samanthatimms1

    Being a Coeliac disease is easier then first expected, but is also such a massive impact on the sufferers life, requiring lots of support around them. Until your thrown in the world of being a Coeliac, its hard to anticipate how much food really is involved in your life. I wish you all the best and hope everything goes well. Any questions feel free to message me through my blog or, private. samantha.timms1@gmail.com

    Its only if the blood test comes back showing the antibodies which Coeliac disease sufferers will have from gluten being in their system. If they come back positive for them antibodies, then only then do they refer to gastroenterologist and talk about a Endoscopy. You have the blood test(given by your doctor, or the encrinologist could have done one) done first. Can get that done asap. As a Gastroenterologist could be a wasted route if it isn’t Coeliac, and I’m well aware that healthcare isn’t free in your country.. i really wish you Good luck.

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