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Anyone with Gluten and Wheat free experience?

(16 Posts)
pleasekeepcalmandcarryon Fri 24-Jun-11 21:04:34

Both my DS's are 4 days into a G/W free diet. I have been very strict and they have both been compliant (albeit a bit of moaning from eldest). Both have ADD and ADHD (youngest on meds).

I have been prompted into trying this due to eldest (age 10, ADD) being increasingly moody/difficult/depressive of late. He has also suffered for a few years with aches, pains, lethargy and recently blotchy spotty skin. He has missed a fair bit of school due to 'feeling ill' but not actually being ill iyswim. (he had blood tests (not for allergies) about 18months ago which showed nothing)

Anyway I do think the last couple of days have seen an improvement in behaviour and wellbeing. Eldest has got out of bed no problem, skin cleared up and youngest has stopped chewing clothing anywhere near as much. Both seemed more manageable, still not 'easy' but better.

Today eldest went to a friends house for tea- I sent him with pre prepared food so as not to disrupt diet. When I collect him he was in a bad mood and his cheek was blotchy and chin spotty again, now he is complaining of feeling unwell and is a bit emotional. I asked him if he hadn't eaten anything today other than food from home and he confessed to having some of his friends chicken nuggets (which I assume will have had wheat/gluten in the breadcrumbs).

Is it likely that such a reaction would occur so soon and am I reading too much into improvements only a few days in? I am aware that in my desperation I might be suffering from placebo effect by proxy!

Does anyone with more experience have any thoughts?

mumsiepie Sat 25-Jun-11 08:31:19

Go with your instincts....you saw an improvement in both then a deterioration after eldest eating breaded nuggets.

I know you can have an almost immediate negative effect after eating gluten. My FIL has symptoms within an hour or two.

Well done for trying it and good luck x

freefrommum Sat 25-Jun-11 13:24:57

Have your sons been tested for coeliac disease? The initial test is a simple blood test and if that's positive they follow up with a biopsy of the gut (even though the blood test is about 90% accurate, you can't get an 'official' diagnosis in this country yet without the biopsy). If they haven't been tested yet, I would strongly advise you to get the GP to carry out the blood tests. The only problem is they will need to be back on gluten for a few weeks before the test otherwise it won't be accurate. My daughter was recently diagnosed as coeliac and has been gluten free since April. So far, she doesn't seem to have had any 'accidents' but I know many coeliacs who are very sensitive to even the smallest traces of gluten and react very quickly. If the tests come back negative, I would still try going back on the gluten free diet as there is significant anecdotal evidence of a gluten-free diet helping with ADHD symptoms.

Btw for future reference, Sainsbury's sell really good gluten/wheat free chicken nuggets in the freezer section.

pleasekeepcalmandcarryon Sat 25-Jun-11 16:15:09

Thanks for the advice. They haven't been tested for coeliac but neither have any bowel symptoms which I thought was a usual indicator. I speak to their consultant about it as they have an appt soon but I am a bit loathe to stop now I've started as I think it will give the older one the wrong message.

On the plus side he seemed to recognise that he may have felt unwell because he deviated from the diet so he has been a bit less obstructive today.

I think the bread issue is the sticking point really, there are so many GWF products now that the kids are eating almost as they would have done before but DS1 has a real issue with the bread.

Have tried Sainsburys and Tescos and am going to try Genius as I have been told it is the best shop bought. I have a bread maker and have tried two different receipes, the first was only good for toast-very dense and crumbly and the second went straight in the bin!

I think if I can come up with a bread he is happy with we will be sorted- ish. Just the minefield then that is other peoples houses/school trips/eating out etc... I think we will become known as the packed lunch family. wink

tkband3 Sat 25-Jun-11 16:32:23

My 3 DDs all have coeliac disease. My eldest was diagnosed 5 years ago and my DTs about 2 years ago.

When DD1 went gluten free, the changes in here were apparent very quickly, so your suspicion that this has already had an impact on your DS's behaviour could well be correct. Equally, a reaction to eating gluten can happen quickly, so the change in your son's behaviour after being at his friend's house could well be down to the gluten.

Re the food....Genius bread is far and away the best bread for sandwiches and toast. Sainsburys do quite a nice brown sliced loaf which is pretty good toasted. They also do decent g-f pitta bread, part-baked baguettes and rolls and some pretty good cakes and biscuits (although as far as cakes are concerned, I simply substitute Doves gluten free flour in any recipe and it works just as well). As freefrommum says, their frozen free from chicken nuggets are good, as are their fishfingers. They also sell (as do Tesco) Bob the Builder pasta, which my 3 are rather fond of! Almost the whole range of sausages at M&S is now gluten free and I've heard (although haven't checked it out myself) that Asda now do some g-f sausages too.

The advantage to being diagnosed with coeliac disease is that you then get a lot of dry food on prescription - bread (including Genius bread now), part-baked rolls, pizza bases, pasta, crackers and some plain biscuits. Obviously, given the high cost of gluten free food, this is a definite benefit!

I think once people know a child is gluten free, they get worried that they are going to be responsible for a reaction and panic about cooking for them. When my 3 go to friends' houses, they tend to have jacket potatoes with cheese and beans, or the mother will get some pasta specially for them. They have packed lunches at school and if they're invited to a party, I find out what sort of food is going to be there and try and replicate it for them as closely as possible. Often, the other children want what my lot have! Some friends go to the trouble of making gluten free birthday cakes which I really appreciate, but if not, I take some cakes with me so that they can have something on the way home. All the supermarkets now do some sort of sponge sandwich cake in their free from range which is a good option. It can be a pain in terms of not being able to be spontaneous when you're out and about, but Pizza Express will cook a pizza on a g-f base if you take one with you, Carluccio's and Zilli's do gluten free pasta, Wagamama's have a menu showing what is gluten free and even Macdonald's will do you a burger without the bun if you want it!!

Hope some of the above is useful - as mumsiepie says, follow your instincts...you know your DSs best.

purepurple Sat 25-Jun-11 16:34:59

Dh has recently been diagnosed with a wheat intolerance. When he has it now he can tell within a couple of hours.
He says the Genius bread is ok, but a bit dry and tends to fall apart. But he says it is the best gluten free bread he has tried.
It is surprising just how much food has wheat and gluten in it. Stuff like soy sauce and lots of sauces. Eating out is a bit of a pain though.

fuzzpigFriday Sat 25-Jun-11 16:42:56

I would really recommend getting a test. Short term annoyance (ie having to give them gluten again before testing) but much better in the long run IMO. Because if you don't test now, but get told to test in a few years, suddenly reintroducing gluten could be very painful. They may well be coeliac, sometimes people don't have the bowel problems for years because the intestinal wall takes a while to get gunked up with mucous <euwwww>

If they tested positive it means they would see a dietician and so you would be supported instead of going it alone.

Also you get free food on prescription grin

Fumblina Sat 25-Jun-11 16:43:10

Ooh, carluccios will do gf? I had no idea! smile

I like the gf ciabatta from waitrose ( yellow on packet- might be one of the brands mentioned here). Not like 'proper ciabatta' but almost like a 'proper' White roll.

freefrommum Sat 25-Jun-11 17:02:16

Fumblina think you might be talking about DS (Dietary Specials) gluten and wheat free white ciabatta rolls - they are the closest to 'real' bread rolls I have managed to find in the supermarkets and both my kids love them.

I really do think it would be worth getting the tests done, even though it will be a nuisance reintroducing the gluten now. My daughter was nearly 10 before she developed any symptoms and even then it was just tummy pain, no specific bowel problems. The best bit is you get food on prescription including the new 'fresh' style breads that are much better than the longlife ones you can buy in the supermarkets (DD has Glutafin fresh brown loaf and loves it, even tho she would NEVER eat brown bread before!). It also means that you get help and advice from a dietician.

pleasekeepcalmandcarryon Sat 25-Jun-11 17:51:53

Thanks for all the food suggestions and places to eat out. I'm grateful I wasn't a mum trying to do this five+ years ago, it must have been very difficult before the supermarkets did a decent range.

If I was to book him a test for coeliac disease how long before would I need to re-introduce gluten? Would it need to be more than a week, if it was a short time I could explain to him why I was doing it and that he would be back on the diet afterwards.

Re the mucus in the bowel, one of DS1's longtime complaints has been constant phelgm in his throat (not related to colds/viruses) could this be a symptom of coeliac disease?

tkband3 Sat 25-Jun-11 22:23:01

In order for a coeliac test to be valid, he would need to have been on gluten for 6 weeks beforehand. Given that you've only just given up gluten, perhaps you could put him straight back on and get a test booked with the GP straight away. The only problem is that the coeliac blood test is notoriously unreliable, particularly in children and you often get a false negative. The only sure way of diagnosing is by biopsy of the intestine, which is done by endoscopy under GA for children and therefore takes a bit longer to have done due to waiting lists etc. However some GPs are happy to take a positive blood test as a firm diagnosis and give prescriptions without waiting for a biopsy.

Not sure about whether phlegm in the throat is a symptom of coeliac, but certainly the moodiness, lethargy and skin condition could all be related. Before my eldest was diagnosed, she had no energy at all - slept 12 hours a night and up to 3 hours a day (at nearly 3), and the rest of the time didn't want to do anything but sit in front of the telly/read books all day.

Coeliac UK is a good source of information if you want to check symptoms further.

freefrommum Sat 25-Jun-11 22:49:27

Funny you should ask that as I've never connected the two things before but my DD did used to complain about phlegm and acid in the back of her throat quite a lot and doesn't anymore so maybe it was symptom. As tkband3 says, they do need to be on gluten for a number of weeks before the test and the worst bit is the wait for the biopsy as this can take quite a while, depending on hospital waiting lists, and they do have to keep eating gluten until the test is done sad It was horrible knowing what was causing the tummy pain but still having to make her eat gluten - felt like I was deliberately poisoning her. It was worth it though as most doctors won't give a diagnosis without it.

pleasekeepcalmandcarryon Sun 26-Jun-11 09:22:02

I have stopped the diet as this morning. Sat and explained to DS1 why I am doing this and given him Warburtons toast for brekkie.

I have also stopped DS2 too incase I need to test both although the diet doesn't seem to have made much difference to him other than he has stopped chewing his clothes (which is actually quite a biggie). It was interesting to note that a symptom of CD is a failure to thrive, DS2 is very very small for his age- the size of a 4/5 yr old at age 7. This has been put down to his ADHD and possibly the meds he is on. He does eat fairly well though but has no other obvious symptoms of CD.

Feel awful though because DS1 is now reluctant to stop because he doesn't want to feel unwell again. He woke up and bounced out of bed at 8am this morning which is unheard of for him. On a weekend he usually stays asleep until 10.30 ish and some school mornings recently I haven't been able to get him up and he has ended up missing school.

I am going to book an appointment with the GP tomorrow. I will update as I know more.

fuzzpigFriday Sun 26-Jun-11 12:39:54

Aww bless him. I do think it's worth doing this, hopefully the blood test will clear things up. You could explain that you've tried a bit of an elimination diet thing, you may need to be persistent though as some GPs are very reluctant - mine took a lot of persuading despite DD having lots of symptoms AND the fact that her dad is coeliac (which increases her chance of having it from 1% to 10%!)

It is such a pain that you have to have gluten before the test, but that's just how the disease works. Our GP lost the record of his diagnosis and when DH asked for prescription food (when we became exempt from charges, couldn't afford it before) they refused because he couldn't prove he was coeliac! They told him he'd have to have a biopsy - no way could he do that though after 5 years of a GF diet - he's in terrible pain even after a few crumbs, imagine 6 weeks of it! Thankfully they gave in eventually and he now gets free food.

Hope you get it sorted, do come back for more advice on food etc. I have to say we've become much healthier after diagnosis, as it forced us to cook from scratch more as well as taking more notice of ingredients on packaging of snacks etc.

pleasekeepcalmandcarryon Sun 26-Jun-11 15:09:53

Thank you fuzzpig, i'm sure I will be back for food advice. Once I have the testing out of the way we are going back to GF regardless of the outcome.

I also realised earlier that despite me saying DS2 (7) has no obvious symptoms I totally overlooked the fact he is still regularly soiling himself. We have always put it down to ADHD behavioural issues but I suppose it's possible he can't help it (he says he can't help it but we have been led to believe it is psychological). Can't believe I didn't make a link there!

RantyMcRantpants Sun 26-Jun-11 22:58:21

I have 2 who are GF. DC2 who has been GF for around 3 years now has only just this year started to grow and is nearly on par with his friends height wise. He has been having some incredible growth spurts the last 3 to4 months. We noticed a big improvement in his skin 4 days after he went GF and by 7 days his bowels improved immensely and so did his behaviour though it is far from perfect still as we think he is on the spectrum. Fighting for a DX at the moment.

If you want to make GF bread then get yourself a Panasonic breadmaker with a GF option, the bread needs different baking and the ingredients go in in a different order. I use Doves Farm bread flour and it is brilliant as are all their different GF flours.

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