Confessions of a badly-behaved coeliac

Wednesday, October 17, 2012 Permalink

I’ve written a bit lately about feelings of bloatedness and general unwellness. I’ve blamed carbohydrates. I’ve blamed the occasional binge or ten. I’ve blamed THAT time of the month. And I’ve possibly even blamed Global Warming. (Or Charlie Sheen. In fact, I’m pretty sure it could be Charlie Sheen’s fault!)

In fact it’s probably a combination of all of those things (well…. most of them!). And something else besides.

I’m coeliac (celiac for my US readers). I’m pretty sure I’ve mentioned that a gazillion times. I was diagnosed back in late 2005 after blood tests and an endoscopy and diligently transferred onto a gluten-free diet.

Insanity: doing the same thing over and over again and expecting different results.Because of a slight slip up with my GP I didn’t actually go for a follow-up endoscopy until 6 years later – rather than the 6 -12 months suggested. That test uncovered a third autoimmune disease (I also have hypothyroidism!) called: autoimmune atrophic gastritis which I often confess to mostly ignoring (like my lactose intolerance). Quite frankly, a gal can only cope with a couple of autoimmune diseases at once. But because that other thing can result in stomach cancer I committed to annual or biannual endoscopies recommended by my gastroenterologist. (Who is, BTW, just lovely. My previous one was as well. What is it with gastroenterologists….? Do they just breed them to be really lovely people?! Hmmm….)

Anyhoo, in my mostly-serious chat after September’s endoscopy I was told that as well as ongoing signs of gastritis, there was some issue with the villi or whatever it is in my stomach – usually used to diagnose coeliac disease. My lovely doctor said that there are rare cases where some coeliacs’ health doesn’t improve on a GF diet. There was an off-chance that I could be one of those people. In that case, she said, it was serious and I’d need steroids because it can lead to death… from starvation.

And yes, she said this to me (about 30kg / 70lb) overweight. With a straight face.

Being naturally apathetic, I didn’t bother about chasing her up for the test results, instead waiting until I eventually went to my GP and remembered to ask (yes, I obviously take my health very seriously!). The doc let me read the gastroenterologist’s letters on her computer screen. Yadda yadda yadda… Something about the gastritis. Something about gliadin (a component of gluten) to which I am – apparently – still being exposed.

“Do you need to see a dietician?” asked my GP (who’s not my usual GP as I was just there getting a prescription).

“No, it’s okay,” I said, and confessed to just being slack.

Now…. I would NEVER purposely eat gluten (other than that one time when I was first diagnosed and got home from the races very drunk and ate non-GF pizza!). But… I have to say, I’ve probably been (increasingly) a bit slack in monitoring my consumption.

MehLike I said, I don’t take my health as seriously as I should. I know others who are regimented about their diets and allergies AND have to be. I just accept diarrhea as an everyday part of life. You know… Meh. So while I don’t purposely eat anything with gluten I don’t care as much as I should. Recently I went to a restaurant for lunch and was told I could eat the steak, but not the sauce (yes fine, I’m used to that) but they weren’t sure about the chips (fries). And what did I do? I ate the fries.

Years ago I checked-in with my local favourite Chinese takeaway and found out what they use in the dishes I like (potato starch, incidentally). But… occasionally I’ll order something different and I DO NOT ASK what’s in it.

I pay a fortune for GF food. It’s always more expensive and I’ve adapted to GF corn chips, bread, sauces and the like… but there are times I remain purposely ignorant. Case in point…. my beloved caramello koalas I’ve mentioned obsessively endlessly over the past year, well… (I’m not sure I should confess to knowing this, but…) THEY MAY NOT BE GLUTEN FREE! And I don’t want to bloody know it.

Yes, I know. I’m like a recalcitrant 5 year old. Even I’m ashamed at this blatant disregard for my own health. So many others have illnesses they can’t control or recover from and yet here am I?!

I should care more. But… I suspect one of the main reasons I’m a bit ‘meh’ is because a GF diet (even in the early days when I took it very seriously) has never really made me feel ‘better’. So many other coeliacs rave about how much better they’ve felt once going GF. People diagnosed after me have commented on it. But… I never felt that. Perhaps I was less bloated (I can’t recall), but there was no obvious… ‘wow, I feel good now my body can absorb vitamins and minerals and I’m getting the sustenance I need.’

However… I can no longer live the life of a teenager (or toddler) and I’m about to embark on some changes so… I’m going back to basics. I’m going to read my labels and I’m going to ask waitstaff detailed questions about what’s in my food. And… I’m going to (eek!) wean myself off caramello koalas, unless I can confirm they are gluten-free.

Do you blatantly disregard the advice of medical professionals, even when you know you shouldn’t?

17 Comments
  • Miz
    October 17, 2012

    welllll
    Id like to say I do….and have to add my docs still insist Im ok with gluten…but when I do I LOSE every joint.
    I swell from head to toe.
    it’s a great deterrent.

    xoxo

    • Debbish
      October 17, 2012

      Miz, I wish I could take heed of my body’s responses to things like gluten (and carbs – if that’s the problem) and stay away.

      As I said I don’t ‘purposely’ eat gluten, but where the line is fuzzy… I certainly make that work to my advantage!

      Deb

  • Eating as a Path to Yoga
    October 17, 2012

    I’m hypo, too. They say I’m hyper right now, but my body says otherwise. I have disregarded what physicians have said. But, it’s because of a lack of self-care and self-esteem, in my case. Also, sometimes an organizational issue, too. But other times, it’s because my inner wisdom tells me that a particular doc is just off.

    • Debbish
      October 17, 2012

      I went to a ‘fat camp’ years ago where the owner/ manager used the ‘underactive thyroid’ as an example of an excuse people use to have gained weight… as if the condition itself was fake. I liked most things about the place and person running it but struggled with that – having been medically diagnosed. (AND gained weight AFTER going on medication…. assuming I’d lose weight once my thyroid had normalised!).

      Deb

  • Dennis
    October 18, 2012

    My doctor keeps reminding me I’m not a kid anymore. I’m finally beginning to take him serious and making a feeble attempt at healthier living. It’s not much but it’s a start.

  • Char
    October 18, 2012

    I just googled Cadbury and the Caramello Koala has trace amounts of gluten but there are lots of other wonderful cadbury products that are gluten free so you don’t have to be totally deprived. Totally understand wanting what you shouldn’t have. I self-diagnosed lactose intolerance this year and because I couldn’t have a lot of dairy products I immediately wanted them – whether they were part of my normal diet or not. I was so relieved to find lactose-free ice cream and bought a tub and once I knew I could have it again I didn’t want it. Perverse? Of course.

    • Debbish
      October 18, 2012

      Wow Char… ‘trace amounts’ of gluten is way better than I was expecting. I’m sure years ago I did some searching (all of the important companies… ie. Cadbury’s, Nestle etc) and was a bit confused about the caramello chocolate and koalas – hence remaining blissfully ignorant since then.

      Tests I had when I was first diagnosed as coeliac showed I was lactose intolerant (although I’m not sure if it’s a temporary thing related to my coeliac diagnosis), but I don’t eat a lot of milk-based products (don’t like them) so it isn’t something I’ve worried about. But yes… I know what you mean about wanting what you can’t have. I do it when I’m ‘dieting’ all of the time, but I never wanted KFC so much as I did after being diagnosed as coeliac and unable to eat it!!!

  • Vanessa @ Babbling Bandit
    October 18, 2012

    You poor things having all those endoscopies! Don’t you just hate the peco prep?

    That would suck having to watch your gluten intake but sometimes I wish I had some intolerances so I would resist bad stuff more. Like an intolerance to chocolate would be good.

    Great to meet you at ProBlogger in Melbourne! See you at the next conference.

    V.

    • Debbish
      October 18, 2012

      It was a bit traumatic at first Vanessa, having to adapt my diet, but I got used to it and the array of foods out there is amazing nowadays. But… I have trouble when I’m out of my comfort zone or familiar territory – like when I’m away and don’t know what local cafes and restaurants are like etc.

      Lovely to meet you in Melbourne as well.

      Deb

  • KCLAnderson (Karen)
    October 22, 2012

    I can’t say that I have blatantly disregarded medical advice, but since I started seeing a naturopath and a hormone specialist (three years ago) I have, in a way, started to disregard the advice of my primary care physician, who used to be the only doctor I saw. By getting my hormones and other systems in balance I have been able to get off Lipitor (and other health indicators have improved). My PCP didn’t like that idea at first, but I now understand so much more about how cholesterol works in the body, what affects it, and so on, that the standard test my PCP had me do was much less detailed.

    • Debbish
      October 22, 2012

      Yes, I think there are definitely opportunities to seek alternative therapies nowadays. (The coeliac thing probably isn’t one of them – other than a need perhaps to avoid other sorts of food as well!)

      Deb

  • Michelle
    October 22, 2012

    I’m lactose intolerant so I can definitely relate to what you’re going through. Don’t you just hate those people who have no health problems and can eat whatever they like. Sigh, life.

    • Debbish
      October 22, 2012

      Too true Michelle. I keep reading about new treatment options for coeliac (vaccines etc) and keep my fingers crossed. On the lactose intolerance front, isn’t there something you can get ‘lactase'(?) which you can have to counteract the effects of lactose intolerance? My GP told me about it once but my pharmacist said it wasn’t available at all pharmacies!

  • las artes
    November 3, 2012

    I know it’s just food, and I’m probably being silly, but this really sucks. I’ve always been a huge foodie (and beer-lover), and I’m afraid of losing part of myself along with the gluten.

  • Sarah
    November 5, 2012

    Hi! I came across your blog after googling “caramello koalas gluten free?”, as my daughter is a newly diagnosed coeliac, and I would love her to be able to eat the best choc ever!

    I was only googling to double check because the ingredients on the pack indicate that they ARE gluten free! They contain wheat glucose syrup, but that is one of those ‘exception to the rule’ things-it’s so highly processed that it doesn’t actually contain gluten!

    The packet doesn’t say may contain traces, I wonder why the website does??

    I’m going to ring the Coeliac Society to double check before I hopefully celebrate by eating a koala (or ten) with my girl! 🙂

  • Sarah
    November 5, 2012

    I just checked the wesbite. I am 99% sure that it is listed in the “Contains traces” column because of this wheat glucose syrup, which is actually gluten free! (check the explanatory box on the Cadbury site). I’m almost certain they are A-OK!

    • Debbish
      November 5, 2012

      Oh no Sarah… I probably didn’t need to know that! Thanks though!

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