How coeliac are you?

Thursday, June 13, 2013 Permalink

I’ve heard this before and just read an article in the latest Coeliac Australiaย magazine about the very issue.

As I understand it (and I’m no expert), it’s actually quite simple. One is coeliac (ie. allergic to gluten) or not. Coeliacs’ reactions to accidentally ingesting gluten can vary. Even I have very different reactions which defy logic. Regular readers may recall a slightly destructive period earlier this year where I PURPOSELY ate normal potato crisps while I was in binge-eating mode. I had no reaction. At other times I can eat bacon which is faithfully promised to be gluten-free, but be on the toilet almost immediately after leaving the cafe.

My last endoscopyย actually showed that the villi in my stomach which should have been ‘mended’ or improved after 5 or 6 years on a gluten-free diet, were – in fact – not. Some extra tests were done and the conclusion was that I am actually eating gluten without realising it. I had to confess I’d been lax. Not – at that point – eating it on purpose… but it was a long time since I’d checked that my favourite Chinese takeaway STILL used potato starch to thicken their sauces. I occasionally ‘chanced’ hot chips when dining out cos I wanted to eat them and preferred to do so rather than ask if they were gluten-free.

I’ve never experienced that ‘magically feeling better’ sensation many diagnosed coeliacs mention. Even when first diagnosed when I swore off takeaway food and only ate boring bland food day after day at home.

I realise, of course, that I’m lucky to be a coeliac in this day and age. The array of foods and alternatives available to me are remarkable. I cannot imagine what it was like 10, 20 or more years ago. Nowadays parents can offer their coeliac kids foods that mimic those enjoyed by their peers and you can go to almost any restaurant or cafe and find menus marked accordingly.

And this is where I wade into shark-infested waters.

It’s great that non-coeliacs (ie. those not diagnosed by biopsy) are health-conscious enough to cut gluten or wheat out of their diets. Indeed I know of many people who’ve had reduced symptoms of bloating and irritable bowel syndrome after reducing the amount of wheat or gluten in their diet.

I have no beef with anyone deciding to quit sugar or meat or white foods (or things shaped like the brain) and so forth. But I have to admit, people who just ‘cut back on their wheat consumption’ can make life a little harder for diagnosed coeliacs.

Non-coeliacs have no need to be as diligent as those of us actually allergic to gluten. Indeed, I know of many people who just cut-out or reduce their consumption of cakes, biscuits and bread – and talk of having a gluten-free diet.

I’ve been in a cafe when a waiter has adamantly informed me that someone else who didn’t eat wheat ate the risotto (ie. so what was my problem?!).

I’ve been asked “How coeliac are you?” When what I think they meant is… are you actually allergic or are you just reducing your intake (although I do realise it’s none of their business, the customer always being right etc). Alternatively I’ll get the, “So, you don’t eat wheat?” comment.

Gluten is a crafty bugger however and doesn’t just feature in obvious BROW (Barley, Rye, Oats and Wheat) products. Soy sauce can contain gluten, thickeners can contain gluten, chocolate can contain gluten, stock powders can contain gluten, bacon can contain gluten, frozen chips can contain gluten, beer can contain gluten. It’s not just about bread, cakes and flour.

Fortunately you can get gluten-free soy sauce, bacon, chips, stock powder and corn flour. (You can get gluten-free beer but I’m glad I’ve never been a big beer drinker cos the one I tasted almost came straight back up! ๐Ÿ˜‰ )

In the meantime, Coeliac Australia (and I’m sure its counterparts in other countries) and nutritionists are doing their best to educate the food and restaurant industry about gluten and other allergies.

I don’t mean to imply that we coeliacs have it worse than others suffering an intolerance. Of course I realise that non-coeliacs who have completely eradicated gluten from their diet will also suffer similar consequences from the ingestion of gluten (I tell my friends it’s a bit like food poisoning); but… sometimes the language can be important.

I’m sure I sound precious or pedantic (and I do feel like I’m being a bitch) but just cutting back on wheat is not the same as being coeliac and it’s helpful to distinguish that sometimes.

Am I being a bit precious (or even a bitch)?
Do you cut wheat, gluten or other products out of your diet?
Or perhaps you have a food allergy of your own?

 

39 Comments
  • Jo Tracey
    June 13, 2013

    This one is an absolute minefield- as you say, there is a huge difference between an intolerance, a dietary preference & an all out allergy. I have coeliac friends who regularly visit, so know to keep the basics in stock- those basic include tamari, home made stocks & gluten free cornflour. We make most of our own meals from scratch, our own ice cream & own curry pastes etc so that makes it easier. I simply change the menu so there is no gluten on it & so they’re not embarrassed to ask. It’s baking I have the issue with, so now I simply ask my gluten free friends to bring their own dessert.

    • Debbish
      June 13, 2013

      Indeed… I hopefully tried to relay in the post that I really don’t begrudge anyone their choices (and I know those who aren’t allergic but intolerant would see that they don’t have a choice) but it’s more the language and perception that causes difficulty in my little mind.

      I’m actually going to someone’s house on Friday for lunch and have flagged the coeliac thing. I’ve said I’m happy to take something along or even meet ‘out’ to make it easier. It can be a bit overwhelming for someone having to cater for a coeliac at times!

      • Jo Tracey
        June 14, 2013

        Your meaning came through clearly- & respectful of choices, but yep, it’s perception that causes the issues…

        • Debbish
          June 14, 2013

          Phew…

  • Kek
    June 13, 2013

    Of course you’re not being a bitch, Deb. coeliac disease is no fad…

    I’m one of many people who chooses to avoid wheat, because in regular doses or large amounts it makes me really sick. But I don’t have to worry too much about the odd restaurant meal – unlike you. For me, reactions are definitely dose-dependent – which is common with food intolerances. I’m about to see a dietitian to find out exactly how wide ranging my other food intolerances are. Yay, can’t wait for that. #sarcasm

    I roll my eyes at the number of people choosing gluten free options who have no idea whether or not gluten affects them. They just have the misinformed idea that gluten-free = healthy. And I’m sorry that these idiots make your life that bit more difficult. ๐Ÿ™

    • Debbish
      June 13, 2013

      Kerryn, Bupa (health insurance company for my o/s readers) here in Oz recently hosted a Twitter chat about coeliac disease and I was reminded of something in those discussions. Tests to diagnose coeliac disease (I had a blood test then endoscopy) should be done initially on a normal diet. A cousin (who lives elsewhere in Qld) is currently unwell and a friend suggested he’s either coeliac or gluten-intolerant. So he’s trying to give up gluten (well, the obvious stuff, cos he likes his beer!). I tried to explain to his parents that if he’s going to get tested he should do so before changing his diet.

      BTW I talked with someone recently who’s diabetic and they have a similar frustration with the ‘I quit sugar’ brigade. Again, this guy didn’t really mind / care that people were reducing sugar in their diets (and actually thought it was a good thing) but he was saying it muddies the waters a little for him also.

      • Kek
        June 13, 2013

        Oh yeah, I know you can’t exclude foods while being tested for reactions to them. I already had the coeliac blood test years ago and came up negative, so I’m not sure whether that one will be part of my testing. If it is, I can always add wheat back temporarily and suffer the pain short-term. ๐Ÿ™

        That whole IQS thing gives me the you-know-whats. So bloody unscientific and so much ignorant crap spouted around the internet. Aargh.

        • Debbish
          June 13, 2013

          I have to admit the IQS stuff doesn’t worry me too much. Like the paleo stuff etc. I’m conscious that people probably groan when I talk about not-dieting or intuitive eating etc. “Another fad,” they probably think. (Maybe they’re right… only time will tell – in my case, that is ๐Ÿ˜‰ )

  • Christine Davidson
    June 13, 2013

    I have celiac disease(in Canada we spell it this way) I was diagnosed via a biopsy and a blood test. You’re right it is easier in some respects than it has ever been. I don’t have the severe symptoms commonly associated with the disease. I was never loosing weight…I just felt not right somehow…I actually thought it was dairy, but as it turns out it was wheat. I couldn’t believe it when they told me! I was almost 100lbs over weight! How could I be celiac! But it was true…I do find that awareness is better than it has ever been, but I do always tell waiters and cooks that it is because of an allergy not just choice that I don’t eat wheat. Mostly people are good about it.

    • Debbish
      June 13, 2013

      Christine… I was never losing weight either before my diagnosis – just bloated and IBS symptoms. I guess I was tired a lot though as well (though I also have thyroid issues).

      And I agree that people are SO much more aware of it now. I have to admit I probably didn’t even really know what coeliac (celiac) was 10 years ago – maybe even 7 years ago! I find that most cafes and restaurants are pretty good nowadays but often don’t know what’s in stuff if they buy it. I’m always super-impressed when someone can rattle information straight back to me. I guess awareness campaigns are working and I hope that continues – as I do occasionally see articles highlighting the difference between gluten intolerance and allergies etc.

  • Char
    June 13, 2013

    I totally get that there’s a difference. I was told by a gastroenterologist that I should cut down the amount of wheat products that I eat because I was having some major gastric issues. I know I’m not coeliac because I can cope with a small amount without any issues. But a friend of mine is and just a small amount can set off her symptoms. And by a small amount I mean she doesn’t even share a toaster with her husband because of the chance of cross-contamination.

    • Debbish
      June 13, 2013

      Yes… it occurs to me sometimes that my symptoms (when exposed) aren’t as severe as they could be because I’m actually (well, I was historically) somehow allowing gluten into my diet. I have to admit sometimes my symptoms are strange. My mother was visiting me in Brisbane years ago once and I was suddenly really tired and had a fuzzy head and headache and general unwell feeling. She examined the lollies I’d been eating (chocolate bullets and caramel buds from the lolly store from the bottom of the Myer Centre in Brisbane!!!) and announced that the bullets were not in fact gluten-free. #Oops.

  • Jessica
    June 13, 2013

    You aren’t precious or a bitch. I have an intolerance and I know that it’s much harder and serious to be a coealiac. My dad was diagnosed about 10years ago when there were no alternatives! I see gluten as poison for my body as I get reactions that feel like poison! It makes me mad when people go off gluten as a fad diet rather than actually have some digestive issue they are trying to figure out!

    • Debbish
      June 13, 2013

      Yes Jess and thanks for commenting. I guess it’s the throwaway comments that frustrate me a little and perhaps confuse others. The “I’m gluten-free,” type comment made in a cafe; but where the person doesn’t worry about the oyster sauce or soy sauce etc that might be in their food. It gives a bit of a false understanding. I’ll go in there next and staff will tell me that their soy sauce or oyster sauce “IS” gluten-free without realising that it might not be (or have never been).

      If that makes sense….!?!?

    • Jessica
      June 13, 2013

      Makes complete sense! Not worrying about that stuff is not being 100% gluten free.

  • Jess
    June 13, 2013

    I try and at the moment in particular am trying really hard to reduce my wheat in take. But I’m not celiac and I think you’re right that the tend to go gluten free must be problematic for those like yourself who have no choice. I’m sure many ppl don’t get the difference and assume you’re just choosing to eat that way.

    • Debbish
      June 21, 2013

      Yes Jess, I always try to use the term coeliac (celiac) if I’m out and talking about it and use the term gluten in stead of wheat etc.

  • ultimate reset meal plan
    June 13, 2013

    Great article to read. Not confirm either its 100% gluten free???

  • Angela
    June 14, 2013

    I have to agree! I admit, I follow a mostly gluten-free diet but when I’m eating out, I don’t worry so much about every little bite but I also don’t complicate matters but asking the waiter about gluten free items. Like you said, that is when trouble starts. Non-coeliac people eating things that a coeliac person can’t but the waiter doesn’t know this.

    I was a little annoyed just recently by a local Pizza place that offers a gluten-free menu. I haven’t talked to them directly but I wonder if they know what it takes to be gluten-free. To use separate utensils and plates, a different cooking surface, etc. for those with a true gluten allergy. My guess is that they just “leave out the wheat” thereby possibly contaminating someone with the allergy. So I understand what you are saying. I just wish there was more education out there for restaurants and things!
    ~Ang

    • Debbish
      June 14, 2013

      Yes Ange… I think the education is improving. I wonder if allergies etc are included in cooking certification courses – would be interesting to know.

      Deb

  • @Kanga_Rue
    June 14, 2013

    You are in no way being precious!

    As mother to a child with a dairy protein allergy, I understand the challenges. I am often offered lactose-free or reduced milk. People don’t understand that it means all dairy – butter, milk powders etc can crop up in everything from sausages to hummus, and means most pastry etc are off the grid.

    It took three goes yesterday to get Pickle a soya babychino that wasn’t covered in chocolate.

    People have presumed I’d guessed at his allergy and had restricted his diet as a preference. Not sure that anyone would choose to submit their child to the restraints unnecessarily without the hospital skin-prick tests and ongoing reintroduction of milk to “challenge” his system under medical guidance.

    I’m lucky that it’s a relatively mild allergy without anaphylaxis, it could be much more difficult.

    Rx

    • Debbish
      June 14, 2013

      Yes, I think getting tested is v.important – it’s better to know in these cases. As I said in the post I’ve talked to SO many people who felt remarkably better after their diagnosis. If I did it was gradual and I didn’t really notice.

      But I’m lucky not to have a life-threatening allergy (undiagnosed coeliacs can develop cancer but it’s not an immediate thing!).

      Deb

  • Satu
    June 14, 2013

    You don’t sound especially pedantic to me. I have no coeliac disease and luckily I don’t think I’m sensitive to gluten or wheat either. I’m a Finn and we are more onto rye bread than to wheat in general.

    I think that apart from real food sensitivities and gluten intolerance, gluten-free is one of the fitness fads that come and go. I’ve seen it touted as the solution to the overweight problem in many places.

    If even fries can contain gluten, you must do a fair amount of detective work every time you want to buy something new.

    And keep away from the dangerous gluten! ๐Ÿ™‚

    • Debbish
      June 14, 2013

      Hee hee… yes Satu. I need to be more diligent and recheck things I’ve been thinking are okay. But yes… it can be complicated. Sometimes it just feels too hard. Plus there are so many variations of ‘gluten’. The Coeliac Society here have little guides with ingredients and even those with complicated numbers etc, plus there are some Apps you can download now to make it easier. Sometimes it’s simpler to stick to the same things all of the time! (Although I love that so much is labelled GLUTEN FREE now. I’ll often write about stuff in my blog that I come across – like the Passage Foods curry mixes I use – because I’m impressed they go to the trouble of ensuring their products are gluten-free!)

  • William T. Williams
    June 14, 2013

    I can’t believe the number of people who think a gluten free diet is beneficial to anyone other than those with coeliac disease – where has this bizarre craze come from?! I’m a student dietitian and we would never recommend a gluten free diet for a non-coeliac as there’s no evidence to support it. Gluten is a protein found NATURALLY in wheat, barley, rye and may be in some oats. It is not ‘bad for you’! A gluten free diet, in which no manufactured gluten free foods are eaten, would include only potatoes & rice by way of carbohydrate – boring and completely unnecessary! People should take things they read in magazines/on the Internet with a pinch of salt… They could have been written by anyone!

    • Debbish
      June 17, 2013

      Yes, there was recently an interesting Twitter chat which involved reps from the Coeliac Society and a number of nutritionists who recommended against cutting out gluten if not diagnosed.

      Deb

    • SarahB
      June 18, 2013

      William, hello! I’m a student of nutrition so in a similar field..but would differ in my opinion and in my own personal experience of whether gluten is good for you if you are not celiac. I have been tested for celiac disease markers and they were negative. However as I understand it the test is not foolproof, as only certain proteins are tested for not the full range. I was offered an endoscopy but didn’t see the need for an invasive process as by then I had eliminated gluten and felt my IBS sypmtoms melt away after a couple of weeks. On reintroducing gluten ( a tempting piece of cake or bread) on at least two occasions the symptoms have returned. Possibly coincidence but unlikely.

      As to the ‘naturalness’ of gluten containing grains, during most of human evolution they would have been available only in very scarce quantities, nothing like the amount we consume today, and the composition of the grain has changed hugely through breeding over the last 10,000 years of agriculture to bring higher yields, better bread making characteristics etc. So the amount and type of grain and gluten are different than that we’ve evolved alongside.

      Finally as a dietician you’ll know that carbohydrates are present in other food types, especially starchy vegetables, so it is possible to be entirely grain free and still have a sufficent carbohydrates…and in my opinion much less ‘boring’ because you leave more room for all the colourful and flavourful veggies full of vitamins and minerals. In western society too many carbs is often the problem..because they are cheap and filling, whilst lacking the amount of micronutrients we need.

      Sorry to have gone slightly off topic…I understand the frustration you must have because I’m one of those people who can tolerate traces so will accept sauces without question..though I make a point in restaurants of saying I’m not celiac just avoiding wheat, barley etc. I think overall it’s helpful though because of demand and supply…good restaurants make an effort to produce gluten free options more than they would have in the past, because it makes commercial sense. They just need to learn how to get it right.

      • Debbish
        June 21, 2013

        Sarah, I like that you clarify your needs in a restaurant as that is the confusion that mainly frustrates me. As I said I think people should be able to eat (or not eat) what they want and perhaps it’s just more about education (in particular with the food service industry). I was actually wishing that – occasionally – those reality TV shows (Masterchef, My Kitchen Rules etc) would make contestants cook meals to cater for people with allergies and use the occasion to educate the contestants as well as those watching. (It would be a perfect time to highlight hidden gluten!!!)

        Deb

  • Edna Wall
    June 16, 2013

    The Coeliac Society of Australia provides useful information on gluten free diets for patients who have Coeliac Disease, Dermatitis Herpetiformis or medically required gluten free diet. See Gastronet patient support for contact details. There are also many local groups outside capital cities. Contact State offices for details.

  • Neen
    June 16, 2013

    No! You aren’t being precious. I don’t even have any allergies but it annoys me when people claim to have them, even if they haven’t been diagnosed.

    And it annoys me when people have allergies but ignore them! I’ve probably mentioned this to you before, but my best friend and her family are all lactose intolerant. We’ll go out to dinner and they’ll be really careful to make sure nothing they order has dairy in it. It’s almost painful! But then they head straight from the restaurant to an ice-cream store, after which, I’m forced to run and find them the closest bathrooom! I can’t even imagine what they are doing to their bodies!!!!!!!!!!

    • Debbish
      June 17, 2013

      Oh no… I am very conscious that my – sometimes slack – behaviour can have dire consequences!

  • Livi
    June 19, 2013

    I completely agree, Debbish. There have been times when I have experienced an emotion that could *maybe perhaps* resemble anger and frustration with the perception some people have, as it can detract from the importance of a gluten free diet for a coeliac (it appears that coeliacs have an intolerance to those who, through not fault of their own, are ignorant of the condition). I am similar to you in that I don’t always get a gut explosion every time I eat gluten. I was diagnosed after a clever doctor made the connection between coeliac and alopecia. And yes, occasionally I get funky gut but there is no real clear pattern to what I eat and what activities my bowels decide to undertake that day. But nonetheless, the mere thought of some underworld damage occurring to my villi without my knowing is scary. This is a notion that is hard to communicate, especially in the restaurant and other public scenarios. When people ask โ€œwhat happens when you eat gluten?โ€ my heart sinks ever so slightly, and I am driven to say โ€œit makes my ears fall offโ€ or some other nonsensical nitwit response because I know that if I told them what really happens, the whole spiel about auto immune reactions and corroding villi, will initiate the shutting of ears response and the question-asker will refer to their fantasy version of what happens anyway…a smelly, comical scene of uncontrollable bowel explosions and farting noises. Whilst I know bowel explosions can be nasty and crippling, and can force their victims into assuming a fetal position on the bathroom floor that day/few days; they are temporary. Intestinal damage, however, is somehow a bit darker, a bit deeper and a bit more disturbing. I think this is where the emphasis needs to lie in order to get people to understand and to stop these silly intolerant people from making such a fuss and undermining our COOL DISEASE!!!! Ahahahahaha.

    • Debbish
      June 21, 2013

      Oh indeed. I have to admit I am very vague on the scientific stuff behind coeliac disease and had colonoscopies etc in case I’d developed cancer. Indeed, I have some other stomach-related auto-immune disease that makes me more prevalent to stomach cancer (or something) as well. I still remember watching an episode of the TV series “House” a few years ago in which a baby died of coeliac disease or some related complications. I can’t remember the detail but it was eye-opening for me, who’s sometimes a bit glib about what it means to me!

  • Liz@LastChanceTraining
    June 20, 2013

    I get the same quizzical looks when I tell people I’m allergic to alcohol. I’ve had the biopsy done and came back negative but wheat seems to do a real number to me in large doses. But I simply look for stuff on a menu that’s low in wheat.

    • Debbish
      June 21, 2013

      I wish I was allergic to alcohol… ๐Ÿ˜‰ (Although I know people saying those kinds of things probably irk you are you’d much prefer not to be!!!)

  • Kelley Ashley
    June 24, 2013

    We have spoken to the Post Office and envelope manufacturers who have told us that the gum used on envelopes is gluten-free and safe for people with coeliac disease.

  • Leta N. Cooke
    June 26, 2013

    You also can try vodka made from potatoes and grapes, which many people find they even prefer to grain-based vodkas. Most types of rum are gluten-free , as are some tequilas .

  • Emily
    July 9, 2013

    Thanks for the post. As a new mama, I am just starting to learn about the minefield of cooking for other kids, and the raft of food intolerances and allergies out there. But I would not question a person who said they couldn’t eat something, regardless of what it was. I’ve seen too many people I know well suffer from eating what seem like the most innocuous things.

    • Debbish
      July 10, 2013

      So very true Emily and you’re welcome. And as for catering to others, it’s great that you’re aware. I’m probably more so because I’m coeliac but since I moved late last year I’ve become friends with a woman whose (nearly 2yr old) is allergic to milk solids, so I’m even more conscious of checking labels. It must be difficult for mums of little kids – who don’t understand why they can’t have what their friends have.

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