Sunday, July 24, 2011

Being Coeliac

This is an updated and expanded version of post from the archives of my private blog, Zucchinis in Bikinis. The original piece ran in July 2009. I'm reposting it here at the request of two newly-diagnosed Coeliac friends who are feeling a bit raw at the moment.

I have referred, mostly in passing, on this blog to the fact that I have Coeliac Disease (an autoimmune disease that causes an abnormal bodily reaction to the ingestion of gluten). I haven't talked much about what this means, or how it has affected my life, but I thought I would now.

Why? Well, the past couple of years have seen an increasing (and to me, worrying) number of articles, news pieces and conversations that seem to contain the underlying assertion that Coeliac Disease is a "fad" of some kind, that in fact Coeliacs aren't really harmed by gluten in small quantities, and that it's an inconvenient, even rude, expectation to ask for gluten free food. I am guessing that this is based on the increasing prevalence of diagnosis of the disease, and the fact that the issue is confused because of the number of people who are not Coeliac but are wheat allergic, or not Coeliac but avoiding gluten or wheat for general health or intolerance reasons, or not Coeliac but dieting and avoiding carbs (avoiding gluten will certainly lower one's carb intake unless you make efforts, as I do, to keep up your carb intake).

My story is typical in many ways. I was diagnosed four and a half years ago, following a period of sustained ill health and vague, weird symptoms that came about soon after the birth of my second daughter, E (who is now 6 years old). My symptoms were not "classic" Coeliac ones - I had no vomiting or nausea, no bloating, and only occasional abdominal pain. Instead, I had mild but persistent reflux, thyroid dysfunction, chronic anaemia that taking iron tablets did nothing to correct, low stores of other key vitamins and calcium due to the inability of my intestines to absorb these nutrients, and a horrid, ever-present throat swelling sensation that interfered with my sleep and drove me well-nigh batty.

After many frustrating months, I was fortunate enough to see a GP who referred me for a gastroscopy. When I awoke from that procedure, the specialist was there to greet me, witb the words, "Well, I have good news and bad news. The good news is - I know what's wrong with you. The bad news is - you have Coeliac disease. Absolutely classic presentation." And so, my gluten free life began.

At first, although obviously relieved to have a diagnosis and a plan of action, I felt utterly overwhelmed and depressed at the idea of modifying my life so completely. Coeliacs cannot ingest wheat, barley, rye or spelt (or, depending where you live, oats). At all. This is not just a matter of avoiding bread, cakes, pasta and pastries - if only! There is hidden gluten in most packaged foods, sauces and marinades, some sweets, and so on. Takeaway food is well-nigh impossible. Restaurant dishes often have gluten "under the hood", as it were. And just when the first hurdle of avoiding actual gluten in foods is jumped, you come bang up against the contamination issue. There may not be gluten in the dish itself, but how was it prepared? Were there crumbs or flour around when it was being cooked? Was that tub of margarine previously used to butter someone's toast? What about the cookware - how was it cleaned? CAN you really clean wood (spoons and so on) adequately? My head started spinning, and did not stop doing so for well over a year.

Slowly, eventually, I adapted my cooking and diet so that I could eat gluten free, while still living with "normals" who wanted and needed to be able to eat regular bread. I learnt how to modify recipes and I learnt a swathe of new ones - in fact, I am now a much better cook than I was before. Necessity is the mother of invention, after all.

Despite my diagnosis, I made compromises - I still make them. While I'd prefer to run a completely gluten free kitchen to avoid the contamination issue, I don't do so, as I believe my children and husband shouldn't have to suffer the miseries of gluten-free bread because of me. Sometimes my husband and daughters will have takeaway food, which, unless it is Chinese food from a local place that does gluten free food, or Nando's chicken, I cannot share. When we eat out - a rarity - choosing off the menu is a complicated and at times embarassing experience (unless you find somewhere that really gets gluten free food and offers a menu accordingly). We do not eat at friend's houses unless I bring dishes for myself, as I cannot risk the contamination.

This is an often complex way to live. I have to spend much more time thinking about my food and my diet than I ever did more, and sometimes it's wearying. And sometimes I slip up, and get "glutened" ... and suffer the consequences for weeks afterwards. It isn't "fun", it isn't easy, it isn't because I'm being fussy. I'm doing this because after 6 weeks eating gluten free, my symptoms went away. Entirely. I have normal mineralisation levels now. I have no throat swelling, no reflux. I had the healthiest pregnancy imaginable with C, my youngest baby, even though I was much older having her.

The thing is, Coeliac Disease is not an allergy, and it's not a diet decision. It is an autoimmune disease. The ingestion of even a tiny amount of gluten sets off the body's immune response, which then causes an inflammation of the lining of the small intestine, flattening the villi and interfering very seriously with the absorption of nutrients (which is the job of the villi). Even a few breadcrumbs are enough to set off this reaction. The villi will take 6-8 weeks to recover after each exposure. This is not an imagined thing - it is demonstrable via biopsy and blood tests. (In my case, "flamboyantly so", as the specialist told me).

Coeliacs who continue to ingest gluten suffer not only immediate effects (ranging right across the spectrum of gastrointestinal misery and into all body systems, including a charming skin condition called dermatitis herpetiformis) but have a frighteningly high lifetime risk of osteoporosis, lymphoma cancers, anaemia and all its associated ills, and so forth. These are not trivial consequences. They are very potent risks, and risks that no critic of gluten-free eating would dream of assuming for themselves.

Also, Coeliac Disease is not a "modern" invention - the word comes from the work of Aretaeus of Cappadocia, a second-century physician who treated patients with the condition. It is not something that goes away with time, or you grow out of, or would be fixed if you just ate enough wheat and barley to "toughen up" or "desensitise" your system, as has been suggested to me by one well-meaning friend.

What would happen if food security faltered and Coeliacs no longer had access to gluten free prepared foods in shops? Well, I cannot speak for all Coeliacs, but I can tell you that I would simply eat more potatoes ;-) By which I mean, my Coeliac disease is not a first-world fussy luxury that I allow myself because I am, in world terms, filthy rich (although I am that, and know I am). Even if I became significantly poorer and my diet options restricted drastically, I would still avoid gluten at all reasonable costs. There would be no point, after all, in eating a bread loaf out of hunger only to induce several weeks of dysfunction that meant that every bite I ate thereafter was doing me little good. Would I eat gluten if I was actually starving? Well, yes, but people eat all kinds of things that aren't good for them in that scenario. Hopefully, for me, it will never come close to that.

So all of this leads me, at last, to my actual point. Which is this - please, please, do not mistake a Coeliac for a food pest. Yes, it may not be as easy to cook for a Coeliac. Yes, it is hard to get gluten free food right. Yes, Coeliacs may sometimes have to decline your food if they can't be sure about it. Yes, it is a MAHOOSIVE pain not be able to use the cheapest, best-behaved ingredients in your baking (nothing else bakes as well as wheat flour. It just doesn't).

But we are not doing this for fun, or to make your lives or our own difficult. Coeliacs have a hard enough time as it is without being treated as pariahs or nuisances. Treat a Coeliac's request to eat gluten free as seriously as you would treat someone's injunction to avoid peanuts due to anaphylaxis.

Because, I will speak only for myself here, but why am I doing this? I am doing this so I have the health and energy to play with my family. I am doing thus to increase the odds that I will be here to mother my children, see my grandchildren, and reach a deservedly cranky old age ;-) That's my row to hoe, but I hope that no-one feels the need to plant stones in my path, out of pique, ignorance or misunderstanding.


  1. I feel you! I was also diagnosed with coeliac disease soon after the birth of my daughter. I also had rather vague symptoms that were certainly not classic.

    It explained years of feeling 'off' but never really understanding why. I doubted myself so much before the diagnosis.. I had heard one too many doctor say "it is just stress's all psychological"

    I have had many people roll their eyes when I explain I can't have what's offered.. And worse, I had a waiter in a top Melbourne resturaunt say to me "I have never heard of a pregnant coeliac before.. I don't know if there is anything on the menu for you" !!!!

    Thanks for this wonderful post - it seems I am not alone in the frustrations (and joys of good health) in this lifestyle change. I think I will send this to a few of those 'friends' who don't get it!

  2. Brilliant post, just brilliant. I am a Coeliac too, have been diagnosed for 8 years and everything you have said is so so on the mark for me. Loved reading this. Thanks for speaking up!

  3. Wonderful post. My husband was diagnosed last year & people have no idea how hard it is to live with this disease. It drives me crazy when people claim to have an "allergy" when there's no medical evidence that they do. Our son has peanut allergy & we live with fear everytime he eats outside our home. Strangely though, the peanut allergy is actually easier to manage than the coeliacs.

  4. Great post Kathy. My first-born had a severe allergic reaction to gluten - life-threatening in fact and I can totally sympathise with the stress of reading labels and being 'difficult' at parties or meals out. He finally grew out of it a few years ago and I cried with relief when the hospital gave us the all clear!