Coeliec disease - do I REALLY have to avoid all gluten including crumbs?!

[Tootingbec]

Hi there

I have been suffering from somewhat chronic low level anaemia for the past 20 years (!) but have sporadically taken iron tablets during e.g. pregnancy. Never really thought much of it - just thought that was me.

However recently I have been suffering really badly from mouth ulcers and general exhaustion but put this down to small children and working full time. I had a blood test and am anaemic again so back on the hard stuff but then my GP suggested I had a test for Coeliac disease as apparently chronic anaemia can be a sympton.

I protested that I have never had bloating, pain, horrid poos and I eat TONS of wheat and gluten products because I love bread, pasta, gravy on my roast potatoes, crackers with cheese - the whole lot! My GP said that people have coeliec disease with no obvious 'gut' symptons.

Anyway, to get to the point, if it turns out I do have Coeliac disease (haven't even had my blood test yet let alone a biopsy!) and my only symptom is anaemia, can I not just cut down on gluten and keep taking iron tablets. I have read that if you have coeliacs then you have to avoid crumbs (CRUMBS!!) and can't eat anything that has even been anywhere near gluten.

The thought of having to arse about with a gluten free diet (yes I am sure all the gluten free stuff tastes great etc etc) FOR THE REST OF MY LIFE fills me with horror. Avoiding bread and eating gluten free pasta would be painful enough but to have to avoid CRUMBS or using different tongs to remove my pretend pasta out of the pan sounds insane!!

What would happen if I reduced gluten in my diet and compensated for my lack of iron instead?

I suspect the answer is "yes".

MIL is coeliac and religiously avoids everything with even a hint of gluten. I believe she is ill if she accidently ingests even the smallest amount.

She doesn't however use a separate toaster etc. I know her consultant doesn't approve but it seems to work for her so on a scientifically invalid sample of one I'd say separate tongs might not be needed.

She does get her (OK if toasted) gluten free bread on prescription if that is any consolation .

It's very unlikely you'll have coeliac's if you don't have any of the symptoms and consume a large amount of gluten.

I've got coeliac's disease. Too much gluten leaves me in agony. The bloating is horrific - think 8 years pregnant. I've been to a few support groups, but I've never met anyone who doesn't have the pain and bloating, even if their digestive system functions normally.

As an aside, I also have chronic anaemia. It is nothing to do with my coeliac's - eating gluten doesn't affect it, I don't respond well to iron tablets. Injections and consuming as much iron as possible are the only real things I can do, but I've got used to it, nothing really helps.

Gluten free food is disgusting. Absolutely disgusting. Once you've eaten it for a while you get used to everything tasting like play dough or chalk, and every once in a while a company claims to have made a "tasty" gluten free product, but it's all rough as hell.

If you have coeliac's, any gluten will cause issues and damage. I'd bet half my house that you don't, but if you do, you can get prescriptions towards gluten free food. In all honesty, you won't eat gluten free alternatives - you just end up giving up anything with gluten in, from biscuits to pasta to roasties, because they don't taste the same.

I'd work on increasing your iron any way possible and try to alleviate the symptoms that way. A probiotic is a good idea too. Reducing gluten won't do much, it's an all-or-nothing thing.

It's up to you what you do.

But people with coeliac disease are damaged by even tiny amounts of gluten. DS1 (age 5) is coeliac, and we suspect that both his siblings are as well (in the process of confirming).

The transformation in him is incredible. If you are coeliac, I recommend going strictly gluten-free for the first 6-12 months. After that, you won't want to eat even tiny amounts of gluten, because you will feel like a new person and won't want to lose that amazing feeling.

By the way, a number of people have told me that when you have a gluten intolerance (coeliac) you can become 'addicted' to gluten, (something to do with a chemical effect on the brain) and crave wheat-heavy foods. That was certainly true of DS1. After being gf for 8 months, he's really not bothered and doesn't crave those sorts of food. So that might be true for you too.

Good luck, whether you are coeliac or not (unlike others on this thread, I think your symptoms are quite suggestive of it) and I hope you feel better soon.

Caja - so sorry that you hate gf food so much. I don't - and I eat it by choice (we are gf at home because of coeliac children). We eat a lot of 'naturally' gf food, rather than lots of 'substitute' stuff - so meat, fish, vegetables, fruit, nuts etc. And chocolate and some homemade gf cakes/gingerbread. I feel our diet as a family is much healthier than before.

Thanks all and I am sorry to hear you suffer so much Caja - sounds rough.

My gut (pun not intended) is that I don't have it as, honestly, I am the original white bread girl and I have always been a once a day poo type of person with no bloating or pain or anything (beyond the occassional trapped wind that I am sure everyone gets now and again).

I clearly need to be tested but I guess I should stop pre-empting something that hasn't even been confirmed yet.

You would need to avoid all gluten - if you are coelic, then gluten causes your body to attack itself and it can lead to nasty long term conditions.

I've been gf for 14 years now, and actually, I'm very happy with what I eat. I only ever make gf cakes, and non gf people love them. There are some commercial products that are yuck, but some great ones - you just have to try things out.

It may mean you eat a little differently - for instance, I don't do sandwiches very often, but thats just my preference, but I have gravy, crackers, pasta, roasties, the lot

Yes, don't worry too much in advance Tooting! If you're not coeliac, then great. And if you are - then, also great because you will be on the verge of entering a new lease of life where you have loads more energy and feel fantastic

I am not minimising the ongoing difficulties of gf life (I experience them with my DC). But the health benefits of gf for coeliacs are incalculable.

I'm a bit confused as to whether you know for definite you're coeliac or not because you say the bloods haven't been done.
Your post sounded like me before I was diagnosed. I was certain I didn't have coeliac as I didn't have stomach problems etc I was anaemic though and ate stacks of gluten! Now, after being diagnosed, I've been gf for four years and, like other posters have said, you feel so much better. I would never eat gluten now because I now know how it feels to be well. I just got used to feeling tired etc and I now know how I was feeling wasn't normal.
I must say I am strict about the gf diet and sometimes its tough. But I would say try it and you'll probably feel so much better that you wouldn't want to eat gluten. Foods like cakes and bread are tge hardest but it's really not too bad! In fact the choice of restaurants etc has improved loads over the last 4 years. Good luck with it all.

If I have small amounts without knowing it I always get a painful mouth ulcer.