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Any coeliacs out there?

(15 Posts)
Hohumchops Sun 02-Jan-11 18:22:41

Need to dampen down my mild panic....

bramblebooks Sun 02-Jan-11 18:55:06

Yes, my DH is coeliac and I do most of the cooking. I think my DS2 may be heading that way, but he's only T1 diabetic for now.

It's an adjustment once diagnosis is made, but he feels so much better and is well now food management is sorted.

There is so much food out there and he doesn't feel that he's missing out.

You ok?

Hohumchops Sun 02-Jan-11 19:15:01

Have been diagnosed with IBS years ago and then wheat and dairy intolerant so have been avoiding them both for years - but still eating. Now when eat some wheat am really suffering - feels like all insides are poisoned and need a good clean. Then I get a bad tummy which means I don't eat properly for a day. Have just started a new temp job so scared of the appt with doc's this week coming. Scared they'll tell me to eat wheat for 6 weeks to get tested (previously have been tested twice but both negative) and how will manage that with work. Scared they'll tell me just IBS or acute intolerance and give me no help to manage it like before. Scared will test positive and I will have to lead an even more miserable food existence.

I know people cope with it all the time but atm it feels like something hard to cope with.

Hohumchops Sun 02-Jan-11 19:16:28

Went out for lunch today and now feel like insides are inflamed and like will be on the loo all day tomorrow so am feeling down and miserable and scared that positive test seems more likely since I would only have eaten small amount of wheat in a sauce.

tribpot Sun 02-Jan-11 19:23:24

Actually testing positive would be a good thing - it means you get access to a load of stuff on prescription that I have to pay a shedload for for my DH.

But I do sympathise if you think you might end up back on wheat for 6 weeks for an accurate test, that's awful, esp with a temp job. Maybe ask to defer it to a more convenient point in the year?

If you get the IBS line again, it's not the end of the world, you just have to manage it. It's a lot to get used to but once you are, you'll be fine. If you get no guidance in how to manage your diet, come back to MN and we'll talk you through it. Although if you've been avoiding wheat and dairy for years I'm surprised you're still struggling? That's a tough combination.

bramblebooks Sun 02-Jan-11 19:25:30

sorry to hear that. There is only a small amount of wheat needed to be eaten daily for the six weeks.

Hopefully someone will be along shortly to say how much.

I wonder if the screening has become more accurate since you were last tested.

Hohumchops Sun 02-Jan-11 19:29:03

I find dairy quite easy as I don't really like it anyway and my body is fine with soya. Besides, so far have only been diagnosed with intolerance and I can tolerate bits enough to make life workable. The wheat thing though seems to be getting worse all the time. Went from just cutting out things liek Weetabix to now struggling with small amounts. Not sure that can happen with just intolerance. Maybe getting more intolerant.

Feel need to get tested again as important for overall health but I hate being the odd one out and struggling to find lunch at work when everyone just pops out for a sandwich from the closest place.

Am just feeling down and grumpy.

Nice to hear that it't not too tough on the other side, if it comes to it.

tkband3 Sun 02-Jan-11 19:34:12

My 3 DDs are all coeliac and they cope just fine. It's possibly easier to be diagnosed earlier in life as you then don't miss the taste of things like proper bread, but tbh the gluten-free products are pretty good these days - there's even a decent bread (Genius). Pizza Express make them pizzas on their own pizza bases and we've just had lunch at Carluccio's where they do a gluten-free menu.

I think you do need to eat a fairly significant amount of wheat over a period of at least 6 weeks prior to testing - equivalent of about 2 slices of wholemeal bread per day if my memory serves me correctly, but you could check with Coeliac UK for accurate advice. I can understand your concern about the next few weeks before you're tested, but I'm sure if you are diagnosed and go completely gluten-free, you'll feel so much better that it will all have been worth it.

If you do get the IBS line again, try going gluten-free anyway. A friend did this and has noticed a huge difference.

2madboys Sun 02-Jan-11 19:35:53

My DH was diagnosed two years ago, just before Christmas and a trip to Disneyland Paris! Was hoping that he could defer testing until after the Christmas, but he was feeling so rough that decided to go for it anyway. Is there any family history? His Mum and Uncle both have it. Anyway, it's totally been not as bad as expected. He felt loads better within a matter of days. Things have improved food-wise even since then, especially with gluten-free bread. Most other things, a substitute can be found for and like the others said, if you get a proper medical diagnosis, you can get things on prescription. Don't panic! If you need to go back on gluten, it is only a small amount per day and will be worth it to get the diagnosis/prescription.

MadamDeathstare Sun 02-Jan-11 19:37:17

Message withdrawn at poster's request.

bramblebooks Sun 02-Jan-11 19:44:55

One good thing anbout diagnosis is the prescription food - genius bread is now available on prescription and it's lovely.

tribpot Sun 02-Jan-11 19:45:07

How are you with oats, Hohumchops? My dh (not, apparently, a coeliac) can tolerate but my ds (now not wheat-intolerant) can't. He used to like Oatibix.

Food menus are much better than they used to be, we don't eat out a lot but I seem to recall La Tasca being quite good at labelling things.

I wouldn't worry about being the odd one out at work - you can always go for a salad in Boots or suggest baked potatoes or similar? People will understand.

Hohumchops Sun 02-Jan-11 20:14:22

Wow! have always ignored Carluccios - there is one right by me and i never knew. thanks so much for that tip.

Oats are fine for me - I live on them!

needcoffee1982 Mon 03-Jan-11 09:19:35

Message withdrawn at poster's request.

ALMOSTMRSG Mon 03-Jan-11 19:59:26

DD is a coeliac, as is my aunt. DD is very sensitive to gluten and cant tolorate oats. As perviously mentioned contact Coeliac UK for advice. Lots of good prescription foods and supermarket ranges now available. DD manages her diet very well. Takes her own food to parties etc.

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