Coeliacs tests, when can we come of gluten

[cherryredretrochick]

Ok, you have all been helping me so much these last few weeks so thought I would ask the next logical question. DD 4yo had the blood tests for coeliacs as well as a diabetes test on Thurs. The results for the coeliacs test may not be back for a couple of weeks. Can I take her of Gluten or do we have to wait for the blood test results to see if she needs a biopsy, ie do they still need to be having gluten before the biopsy. I just want to do something to help her she seems to be going downhill rapidly these last few weeks.

Thanks,
I had not even thought about the toaster thing. Mind you I want a cool pink one anyway so could be a good excuse.

I don't know about her weight as she has not been weighed by a proffesional since the health visitor signed her off, She was very nderweight, classed as fail to thrive and I had PND with no2, at the time I was told I was lucky SS didn't get involved and I got very paranoid that they wanted to take her off me. When she was tiny she went into A & E and they wouldn't let her out for 4 days as they said I wasn't feeding her.

She was just struggling to stay awake all the time and so unhappy, I used to slightly joke with my mum about how a four yo could be depressed (only because it hurt me so much). I have such an issue with her weight that I am going to freeze up when they want to weigh her, which I know they will.

I am struggling a little bit emotionally at the moment because I feel like I have let her down when the solution was so simple, I can't really understand why she was not tested when she was 10mo and very ill with lactose intolerance and losing weight.

It really helps being able to do something, today she has dropped again, although not actually until about 5pm and I suppose it is going to take a while to completly recover.

The GP did say it would be expensive for a few weeks while we work out if the diet helps which both me and my mum took to mean that he will diagnose her, or at least prescribe food. TBH I really don't care how much it costs. She seems to have found food at last, in the greengrocer she chose loads of fruit and veg that she wantd to try and tried them all. It is quite nice to realise that it is not my bad parenting that has stopped her eating all this time. People are very quick to offer advice i.e. have you tried not offering her anything else, well yes but after 4years I really don't think it is going to suddenly work.

I can't belive she is eating all sorts of food, without an argument so quickly.

Is it really that quick or am I reading too much into uit?

They do start to recover very quickly but it can take months for the damage in their gut to heal completely (it can take longer in many cases, and in adults it has been known to take two years). Don 't feel guilty - it took our doctor seven years of implying I was a neurotic mother (I actually reduced DS's gluten to a minimum as I knew it was causing the problem but this was before the internet so I couldn't research the problem) and finally he had an alarming allergic reaction to Rice Krispies (caused by the gluten in the barley malt) , I insisted on the coeliac blood test and bingo. Lactose intolerance often goes with being coeliac and often after the gut has healed small amounts of milk can be reintroduced - but that's a long way off. I wouldn't even think of that until she has got to the weight she should be - and I would discuss it fully with your doctor at that stage. Please don't feel you've let her down - lots of children go undiagnosed for a lot longer than your daughter.

Until you get the diagnosis and can get the Coeliac Society bible (the new one is delayed for this year) if you want to check "safe" brands of food post on the coeliac board and they will give you a fast reply. Sometimes labels are misleading even with the new labelling laws - gluten will not be in the allergy box or ingredients but there may be a risk of cross-contamination at the factory. At this stage most people find it easier to cook from scratch - i.e. potatoes, rice, casseroles etc. Tesco Free From Fish Fingers are very nice by the way - and their Steakhouse Oven Chips are also glutenfree (at least they were when I bought a pack a week ago - always check the label in case they change the recipe).

cherry, I remember my bowel symptoms cleared up really quickly, like within days I felt so much better. Other symptoms (like my poor skin) took a while longer.

She probably just feels a million times better already as her body isn't fighting a poison any more.

Other things to look out for in coeliac are iron and calcium deficiencies; although the calcium might be tricky if she is lactose intolerant as well (although you may find that she is better with lactose once her gut has had time to heal; the two conditions often go hand in hand). Lots of leafy green veg.

It sounds like you have a very sympathetic GP. It was probably missed before as it's not on the radar of most GPs. Mine missed it, and although I was referred to a gastroenterologist for my symptoms, it was the GE who asked whether I'd been tested for gluten intolerance. I'd never even heard of it and I was 35!

Other things to be wary of are sweets, and labelling can be very confusing; some things say contains gluten when it is things like malt vinegar or glucose, which are OK for the majority of coeliacs.

Coeliac UK produce a handbook of allowable foods which is free to members. they also have local support groups who put on kiddies parties etc.

I'm sure your head must be spinning with all of this, but it'll soon become second nature

oops should have fully read flamingtoaster's last post; I think I've repeated much of it

cherry, I am excited for you! and you have a very enlightened doctor!

According to our neuro-, the vit deficiencies should resolve in time, just maintain a varied diet and don't overload one type of other carbs, because that can lead to other issues. Only if you have a full blown Coeliac (which usually also means some irreversible gut damage grrr "gold standard CD diagnosis"!!) then you are left with permanent issues.

People wrongly sometimes assume that gluten-free means that you can only eat rice, potatoes, corn (just because you can't have wheat etc), but what it really means is to have a varied healthy diet whilst avoiding wheat etc.

Dangerous Grains book is good to read from the library but I strongly recommend another one. Even now, 2.5 years on the diet I still use it to really understand all the whats and whys..

BOOK

I just wanted to give an update, It has been 5 days now and I actually don't have the same child.
She is happy running everywhere, not sleeping in the day, eating everything in site (bottomless pit), she is even looking better, my friend cam e round last night and said she looks like a healthy child.

At dancing class she was running round, chatting madly to her friends and has just been full of energy, her tantrums are now just a split second reaction and she is back to smiling seconds later rather than half an hour followed by a hour of not speaking to anybody. I don't think she has actually looked sad for days.

I am going to get the books nightcat has recommendednext week as well as a new toaster, some bread mix from lakeland which somebody recommended. I guess shopping is going to be a little more hard work but it is quite intersting finding everything (although a little pricey).

I really can't belive the difference in onl;y 5 days, I thought she was definatly anemic which she was not although she did have a low iron count, I am hoping that there has not been much damage done and it has been reversed as quickly as it would appear, we are also getting her little sis reffered to the gastro so may be trying her out once I have got myhead round it all.

I wanted to thank everyone for your help, support and information. I am sure I will be asking for plenty more over the next few weeks.

Just off the top off my head is there anything you can eat at IKEA, we have to go tommorow but I may do my own pack up.

Glad your DD is feeling so much better! It's great when you get your happy child back - I had put my son's grumpiness down to becoming a teenager but when he went gf I got my sunny child back.

I don't know if Ikea have gf food - they did have a limited amount some years ago (but you had to be careful to watch for cross-contamination - someone saw them about to use a server from one of the non-gf foods for the gf). One of the problems is once someone goes gf even a few crumbs can cause a bad reaction (because, apparently, they have lost the protection of the antibodies which used to be produced when they ate gluten, these drop rapidly once you go gf). I would take your own food for your DD - at this stage I wouldn't risk her accidentally ingesting gluten and affecting her recovery. I'm sure she will really enjoy her day out now she has her energy back.

Dangerous Grains says that in the US the average time for diagnosis of CD is 7 years! It also lists hundreds of symptoms that have been associated with CD. Depression is one of them; I suffered for a few years before diagnosis, but like many other symptoms CD is hardly the first thing a GP would consider as a cause.

glad your DD is back to her happy smiling self cherry; sounds like an amazing transformation

IKEA are useless at gf food they sometimes do salmon which is ok, but more often than not it's all pasta, pastry and meatballs. I fill out a customer comment card every time I go to the one in Leeds, but it hasn't made any difference!

One thing I have discovered; M&S do a blooming gorgeous gf cherry and chocolate cake . My friend brought one round for me on Friday. maybe a dangerous thing to know though as I usually stay away from cake substitutes etc. This one was too too nice though!