Gluten free diets

[claw3]

just saw this on another thread, but didnt want to hijack.

What are the benefits?

and why are these diets used?

I have googled and it states that diets can improve behaviour, what kind of behaviour are we talking about?

thats interesting. What kind of thing did you notice? Changes in behaviour etc?

Pagwatch, we've been through that loop as well. We had just about decided not to go ahead with the test, when I read a bit further on the subject and came to the conclusion that if he is coeliac we need to be a lot more careful about cross contamination etc. So, separate cooking utensils, food storage etc as well as the detailed label reading and reasearch etc we already do. Also, the odd accidental intake would have more serious implications if he is intolerant to gluten rather than having coeliacs.

The other reason was that if he tests positive, both his siblings will need to be tested as well, as in some cases coeliacs can have little or no symptoms but still have all the nasty health implications.

I feel awful doing it to him though, it has most definitely not been an easy road for him primarily or the rest of the family indirectly.

The GP said if the test was inconclusive or negative we would need to repeat it in a month's time, in case his gluten levels weren't high enough for a clear result. However she has gone for the best blood test they can do and if he has any reaction at all, we've decided we won't retest as its evidence enough for us to treat him as if he has coeliacs. We will also refuse to retest if the result is negative.

Of course if he shows some reaction, but not at diagnostic levels, we will then have evidence enough for the GP to agree to get his brother and sister tested. If they test positive, that would add weight to his diagnosis. Although its not such an issue for them to have the test, as they are both nt and not gf anyway.

Can't believe the phlebotomists screwed the test up though - we weren't prepared for that at all.

yes, similar to gf-withdrawal, but harder to pin down, iyswim.

The soap/shampoo on ewas obvious- she used to sceam and scream while we were washing her, and when we switched to smell-free, chemical free she was a lot calmer (still didn't like the water, mind, or the washing, but not actually hysterical)

toothpaste came about due to me reading up on it, but when we removed it, we had the usuall few days of come-down reaction.

I couldn't swear anyhting about household chemicals, but it does seem to add stuff in - if I am having a huge blitz on the kitchen for eg, and she is about, then she can get really antsy and anxious. red-cheeked, stimming etc.

and the same if we use suncream, or lotionsof any kind actually -you know, moisturisers etc. she gets typical reactions (not skin rashes, etc, but red cheeks, black circles under eyes, sweaty overnight etc) and gets abit more incoherent with speech, etc. seems to struggle to communicate stuff that she would usually do with ease, or goes back to shrieking/moaning/whining about stuff (I make her sound so pleasant! ) instead of interacting properly.

but it does make you sound like a total loon when you're trying to convince pre-school sheneds her own soap, doesn't use suncream ("oh but she has lovely organic cotton kaftans - she's well covered up"), etc etc.one more thing to mark you out, iyswim

I also just thought about it a lot, and realised I was going ot a lot of trouble to not put anything other than real food into her, and then was slathering her with all sorts of stuff designed ot be absorbed by the skin... and I already knew she didn't deal with stuff in the same way most do (injections etc)

moosemama

that is shit for you

TBH I have always treated DS2s symptoms as seriously as coeliacs so we watch cross contamination etc.

If I thought his sibs may have coeliacs then they can have the test. I would not let DS2 have chronic gut problems and spend his time distressed and biting his own arms so that I could reduce the possibility of his brother and sister having a test.

Silver
ditto with the school thinkingthat I am a fruit ckae sending in special toothpaste, sun cream, shower gel for after swimming etc etc
And then the whole chemicals , artificial sweetners.. They still try to give him Haribo at christmas [sigh]

claw - whey powder contains casin so def a no. Sorry

Pagwatch, to be honest, I don't see why they wouldn't test his siblings first, as they don't appear to have any problems with gluten so obviously eat it regularly and already have it in their systems. Surely, they would then only need to test him if one or both of them tested positive.

It gets so frustrating when you know you are making sense and you want to do what is best for your child but they can't see past standard rules and procedures. Feels like you are banging your head against a brick wall sometimes.

We have real problems avoiding cross contamination as our kitchen is ridiculously tiny and we struggle to store enough pots/pans and utensils as it is, let alone separating the food storage. (We have two cupboards and 1 set of 2 drawers to serve a family of 5!)

So if he is coeliac it will mean us somehow persuading the trustees (loong boring story there) of our house to refit the kitchen, which will probably also involve building work. I can't see any other way of effectively isolating his food and utensils as there is simply no room. We don't even have room to keep his stuff in a separate plastic box.

As you can tell, I am slightly stressed out by the whole thing at the moment. We're definitely regretting agreeing to go ahead with the test, but at the time we made the decision, we honestly had no idea how much worse he was going to be when he started eating gluten again.

Either way, he will be coming off gluten again as soon as possible (should be next Monday evening, as apparently he can have his bloods repeated on Monday afternoon) and if I have my way, will never touch the stuff again!

Thanks everyone, i have added a watch to this thread so i can re-read all the info.

I think its going to be tiny steps with ds, will give the bread a try as this wont be too upsetting for him.

Is Genius bread, available in supermarkets?

Quick Google seems to suggest Sainsbury's. Thanks for starting this thread claw3, and to the people who have responded.

My DS eats precious little other than gluten and casein but the bread is a good plan

Thanks Milady, the bread is start isnt it

Are you going to try the bread too?

Yes, he eats toast most days.

It seems to be available in Tesco and Asda as well.

We'll see how they go

Let me know how you get on and perhaps we can swap tips, if either of us have any success.

I will pop to Asda at the weekend and get some. Good luck Milady

You too, and thanks again for the thread. My mate's son is a terrific eater and would really benefit from this and I know it's something she was considering, so it was great to hear all the positive stories. Hopefully we'll be able to add to them

claw3

I hope the test gives youthe info you need to getthe support you need.
Itis shit when you know what needs to be done but you have to drag your child through so many hoops. Good luck

Can I apologise about my post yesterday. When i reread it this morning ( as it was bothering me last night!) it does ( as I feared) read a bit like I am sayingthat I am looking after DS2 by not testing which implies you are not

What I meant was that DS2 has such severe reactions that I have had to just suck it up. It would be good to know if he is coeliac - not least for the prescriptions as waitingforgodot rightly said - but he just has such bad reactions that I can't.
I hope that makes more sense and sounds less wankerish

Pagwatch, no need to apologise, i didnt think you were implying anything. I appreciate straight talking and know that most, if not everybody in this section is well meaning and has no wankerish hidden agenda

In fact, your conversation with the paed made me laugh!

I had a similar one with Paed about ds's anemia.

Paed: Test results show ds isnt anemic anymore, so you can stop the medication.

me: He isnt anemic because he takes the medication, he doesnt eat anything that contains iron, if we stop it wont he just become anemic again?

Paed: Erm, lets just wait and see!

Well im going to make a start with some gluten free bread and see how it goes. No point in testing, if he wont tolerate any change. Its swings and roundabouts really isnt it!

Genius bread seems to give me a tummy ache similar to soya. But it doesn't have soya, so not sure what's in it. Back to rice cakes for me, although mostly we don't have bread anyway.
When my ds was tested for gluten antibodies, the test was negative, but it came back with a note that for under 16 this test can be inconclusive (possibly as their gut is not yet completely wrecked??).
We went gf anyway, no prescriptions, can't live off them, there is very little nutrition in substitutes plus sweeeteners etc. Best to stick to real foods.

Furthermore, claw, bear in mind that the tests and condition are not all-or-nothing result, there is a wide spectrum b/w normal and celiac, which is where gluten sensitivity comes into it (eg my ds).
He had no obvious gut symptoms but others, inc neurological, and there is no test for that at GP. He eventually had a genetic test done by a neurologist that confirmed that he was in that grey area.
I am glad I didn't put him through eating gluten as in the end the improvement on the diet was my main guide and it's often accepted by sensible drs as the way forward.

oh, yes, anaemia, once off gluten, it will fix itself as long as the diet is varied, how awesome is that!!

Nightcat, thanks for that. The main reason i wanted the test for ds is he has real issues and difficulties with food and finds any kind of changes, even the smallest very stressful. If i knew for sure that gluten was causing a problem, putting ds through all the stress of trying to change his diet would be worth it.

He has eaten the same food since he has been able to eat. I have been trying to change his diet for years as it a terrible diet, but without any success.

So i suppose before i can even think about the tests, i need to see if he will tolerate a small change ie bread, otherwise the test will be pointless.

Ds is anaemic because his diet isnt varied. Although others have said once off of gluten, diet can become more varied. Its a vicious circle isnt it!

You know what, I wouldn't start with gf bread at all, start with main meals ex gluten, you will find that gf bread is a very poor substitute and might put him off!
GF pasta is pretty much like-for-like. Or you can simply give him mash not wheat.

Re Iron, it's not just about varied diet, it's also b/c gluten blocks absorption of vits & minerals.
A lot of us have been there, don't get disapointed if tests will not give you a clear answer. I also think it's cruel to try to make them ill, made me realise that the modern medicine is more about illness not prevention.
Let us klnow how it goes for you.

nightcat, when i say ds's diet is limited, i mean extremely limited - honey hoops (no milk) for breakfast, chocolate spread sandwich and plain crisps for lunch, chocolate spread sandwich and plain crisps for dinner, ice cream. Very rarely a yogurt or grapes or McDonald chips. Any snacks are chocolate bread sandwiches, plain crisps or ice cream too!

There is no main meal or pasta or potatoes etc. So i dont have much to work with!

Ds also has a food phobia and real psychological difficulties with food, any food that is not above, he is literally scared off. He will not have any other food near him, he is afraid it will get onto his skin. If i try to introduce a new food ie put one pea on the side of his plate, he will then reject the choc sandwich and wont eat anything for the rest of the day.

No one else but me is allowed to touch his plate or open a packet of crisps for him, otherwise it will be rejected. No one else but me is allowed to make his sandwich, otherwise it is rejected.

Any food which is cooked, has 'worms' in it hence no cooked food. He will eat McDonald chips as these are not cooked in an oven and apparently are too skinny for 'worms' to get into and are given to him in a bag hence not touched by others.

Messing about with his diet, is a real risk hence my reluctance to do so without knowing that he has a problem with gluten.

That's interesting claw3, ds won't touch pasta (or protein other than milk) or potatoes. And McDonald's fries are the only potato-type thing he'll eat other than cheese and onion crisps in our case

I've tried to fool him with other skinny ones but it's those or nothing. Wonder why that is and what the worm explanation means.

Obviously in his case the oven, but was just thinking there might be something else about them...

Milady, from what i can work out 'worms' are any discoloration or imperfections ie food turns brown in the oven. I have also noticed that all his food is biegey in colour and only sweet or salty food is eaten.

Dietitian has given up on ds and now only monitors his weight etc. All our attempts at making changes have failed. He is now under a specialist feeding clinic, so will be interesting to see what they come up with.

, claw, looks like you have a big project on your hands!

In one of the books I have read the author describes how to proceed in extreme cases, don't remember it all now, link below, see if you can maybe borrow it from somewhere. From memory, this was something on the lines of just getting used to the sight of a new food at first, not even eating it, don't recall the rest. The book is the best and most comprehensive and accessible resource I have ever come across. I use about 90% of the advice, but I don't make own yoghourt or bake. There are some recipes, but I like the book mainly for a very comprehensive explanation and I have to say, it answered questions that I hadn't even thought of.

With my ds there was always a question: have I had it before? Another mum always reasoned in a very true way, if you want to grow strong & healthy ... anything, you need to have xyz, otherwise you won't. She also explained to her dd that until she is 18 she must do as told, well, not in those words exactly but in principle. She also told her that she can't be vegeterian until she is an adult b/c she needs to build healthy bones etc, etc. I am not against vegeterianism generally, but there are a number of nutrients you need to supplement as they are not as well absorbed from veg as from meat. Veg cells have cellulose walls that humans can't digest.

Sometimes you might have to resort to a white lie here and there, the shop run out, or you have run out. Or simply put up with a strop, well mega strop I think in your case.

Looks like going gf will probably change you both.

book

website

Oh ds is also extremely pale, i was told once the medication for anemia kicked in, his colour would return (and his appetite!), that was 4 and half years ago and im still waiting. Could this be connected to gluten?

I can understand the imperfection thing very well. Does he reject crisps with black bits on? Ds won't eat them unless they're round, the folded over ones get thrown.

I hope the specialist feeding clinic do come up with something for you