On being a Coeliac
As most people reading this already know, I’m Coeliac (Celiac in the US – pronouced “Seel-eeack” ). This means that I am on a gluten-free diet, and will remain on a gluten-free diet forever. (Gluten is the protein component of wheat, barley, rye and oats. The particular proteins are slightly different in each one, and some Coeliacs can tolerate very pure oats. I tried once, and had the worst migraine ever afterwards – never again!) Different Coeliacs seem to have different levels of sensitivity, and differing severity of reaction. In a Coeliac gluten attacks the gut lining and makes it unable to absorb food properly. This can manifest itself in all sorts of different ways – which is one of the problems with diagnosis – since symptoms are very varied and can be very vague, GPs do not always pick up on it as they should. These days the inital test is a blood test, which, if positive, will be followed up with an endoscopy. (Small sample removed from the gut lining by swallowing a tube – not pleasant, but I was sedated – good drugs!) If anyone reading is wondering whether they may be Coeliac, GO AND TALK TO YOUR GP. (I know I’m shouting, but this is important.) DO NOT put yourself on a gluten-free diet first. A Coeliac will have negative test results if they are on a gluten-free diet. The gut will start to repair itself, and antibody levels will fall. A gluten-free diet is quite a difficult one to start, it really needs the advice of a dietician (gluten can be hidden in places you’d never imagine), and it is important to have regular follow-up for the various associated conditions. (It is an autoimmune condition – there are links with diabetes, thyroid issues and rheumatoid conditions. And because it is a malabsorption condition it is associated with osteoporosis and osteopoenia (aka – ‘almost osteoporosis’ ).)
OK, enough of the general stuff and on to the more personal part.
I was diagnosed when I was 14. My mother and my father’s sister had both been diagnosed about a year or so previously (yes, it has a genetic component, yes that’s both sides of the family… ) and I was simply not coping terribly well with school. In a typical week I would go to school on Monday, survive the morning, then end up in the medical room by mid-afternoon. On Tuesday I’d make it to early afternoon, and on Wednesday I’d end up being sent home at lunchtime. Thursday and Friday I’d spend at home. (Since my first French lesson of the week was on Wednesday afternoon, my teacher was beginning to take it personally.) Senior staff at the school were convinced I was malingering – I even remember there being a school assembly on that very topic which felt distinctly pointed. TBH I wasn’t entirely sure whether I was malingering or not. (Which surely means I wasn’t.) I felt headachy, vaguely nauseous and lacking in energy. Anyway, my mother’s consultant gave her the all clear to bring me with her to her next appointment. (I could be unfair and say that he couldn’t wait to get his hands on me – he was doing research into this very topic, and as a potential patient with it coming to me from both sides of the family I was fascinating to him. But that is unfair – he was very much ‘old school’ and didn’t believe in letting out any information to his patients, but whenever my mother was really ill he was the one who sorted her out.) So I had a raft of blood tests (the current IgA antibody test wasn’t available then (or maybe it was, but he just didn’t tell us… )) and an endoscopy. The endoscopy came back normal and the blood tests … I quote (as he riffled through the pages) “Normal, normal, normal” (pause) “just about normal, normal.” On that basis, along with medical and family histories, he diagnosed me Coeliac and put me on a gluten-free diet.
It would be nice to say I haven’t looked back. But you know, that rather dubious-sounding diagnosis still bothers me. Am I really Coeliac? Or am I simply attention-seeking? (Stop shouting at me John, I’m just trying to get this clear in my own head.) But I know that when I eat anything containing gluten I feel ill. Really ill, not just “I think I ought to feel ill because I ate something by mistake”. I’m lucky in that I don’t get terribly severe reactions (I generally get fatigue, brain fog, nausea, stomach ache, headache – but mostly am able to continue working). I am fairly sensitive however, and have discovered that I can’t tolerate wheat starch (it is possible to get codex wheat starch which only contains a tiny trace of gluten – products made with this are generally much more palatable than those without, but I feel grotty after eating it – not worth it!) or malt vinegar.
But even though my diet is as strict as it can possibly be when living in a household with 3 wheaties, I still get days when I have absolutely no energy, and simply need to slob on the sofa. I’d love to know if this is just life, a mild gluten reaction, or simply that even strict Coeliacs have days like that sometimes.
I went to my first Coeliac Society ‘bash’ on Saturday (well, it’s been 26 years, it’s probably about time… ) and I won the raffle! £40 voucher at a local Chinese restaurant that will cater gf 
. And Adam has been begging for Chinese food – I can see a Sunday lunch out coming up. I have very mixed feelings about attending such groups. I know that they are invaluable for people who are newly diagnosed. And that for such a group to be available people who’ve got their heads around it need to be there. But I don’t want to be defined by a medical condition. As it is it’s desperately tiresome when going out for a meal with a new group of people – I have to go through the whole thing again. I know they are simply being interested and making conversation, but after 26 years of it, it’s really NOT that interesting any more. (I’m whinging, I know – it’s my blog, I’m allowed.)
I’m sorry – this isn’t terribly interesting to most readers, I know (there’ll be knitting in the next post, I promise – I’ve had an attack of Noro-startitis – yummy!), but I’m finding it useful. That diagnosis sounds right doesn’t it?!
Having waded your way through all that – if anyone does have any questions, please do ask – I may be churlish about making small talk about it, but I’m more than happy to help if anyone is struggling with it. I know there are a number of “Silly Yaks” in blogland. I’m more than happy to swap recipes, give advice (the main one being the thing I’ve already said – go and talk to a doctor before trying to put yourself on a gf diet, please. )
four comments:
You are so lucky that you got diagnosed young!! By the time I got diagnosed (at 30), I was osteopenic, had chronic depression, migraines, b-12 malabsorption, lactose intolerance… I think it’s kind of nice going to a support group meeting now and again – if nothing else, I usually manage the annual holiday party, so I can happily eat goodies and feel pretty normal.Chris () (link) - 04 September '07 - 04:50
Interesting stuff, I didn’t know much about why some people couldn’t eat it…jessica () (link) - 04 September '07 - 21:11
So why don’t you get the test and know for sure? But you probably are if you’ve got symptoms and better safe than sorry! I love the ‘attention seeking’ component – really? You could just dress trashy or get trashed at parties for that :) I think you’re safely not being attn seeking by being celiac. Raising awareness.Carrie K () (link) - 05 September '07 - 04:43
I had a housemate in the same situation, coeliac on both sides of the family and v. similar symptoms, but was she going to wreck her PhD by eating gluten so she could have the test? Nope! It seemed about 99% definite that that was the problem.And there are waaaaay easier ways to be attention-seeking so I don’t think you can be being (bad English, but never mind).
I have off days too though, when I just end up slobbing on the sofa – I thought that was normal!
Daisy () (link) - 06 September '07 - 16:54
