Silverfrog - gluten free

[claw3]

We saw dietitian yesterday and i asked about gluten free diet. (new school SENCO also asked me whether ds had any allergies and mentioned gluten)

Anyhow i explained about ds's gluten packed diet and his toileting issues and how i felt before putting ds through lots of stress of trying to removed gluten, i would like the urine test done.

She told me the test is a blood test and a biopsy and that i needed to ask Paed.

She also didnt feel that ds was gluten intolerant as he is 'thriving' ie putting on weight and growing.

Is she giving me inaccurate info?

notreally.

she is talking about actual medical tests, for coeliac'sdisease. there is an argument that you should go down this route, to rule out "proper" medical allergy to gluten. but since the action taken if positve is, err, removal of gluten, then I took the view that easier (and less stressful!) to go for the urine sample (although, come to think of it, getting a urine sample form dd1 was anythign but stress free )

what oyu lose out on, though, is the possibility of prescription gluten free products (coeliacs are entitled to this).

the urien test is done by the Autism Research Unit at Sunderland Uni. It is a big research project, but not yet fully recognised (gosh! what a surprise!)

I wouldn't believeanyhting about the thriving nit either (although ok-ish info if talking about coeliacs) - dd1 is HUUUUUUGE, and always has been. she was tiny when born (6lb at full term) and then just piled on the weight - shot off the top of the centiles, etc etc. since she went gluten and dairy free, she has slowly readjusted back to more where she should be, and is sitting nicely in the middle of the centiles (don't set huge store by the red book, but do like to know what she weighs cos of car seats, etc)

are you seeing her again soon? or paed? you could ask them what they think about the Sunderland Protocol - but don't hold your breath -usually you just get "oh yes, soem people believe it works. butI have to caution you against cutting out such a large part of a child's diet. it's very hard to balance a child's diet anyway - removing dairy (they are obsessed about this!) can be hugely detrimental"

I was pushed and ushed to put dd2 onto cow's milk when she was FTT - despite the fact that I was still breast feeding her - err, breast milk has more calories! but "oh yes, but you can't do that forever" - she was 8 months old, ffs

I will be discharged from Paed now ds has his dx.

Our next appointment is in 6 months with her. I was even thinking of asking if ds could be discharge from her. Her role is not a big one, she weighs and measures height and weight and height is not an issue.

Her only role seems to be to advise on what food is 'good' to eat and i think i worked that one out for myself when i was about 8 years old!

I also asked about ds's anemia and how no one wanted to take responsibility for keeping a check on it, but me.

Paed doesnt check it, GP told me person who dxed it should check it and Dietitian asked 'well who did dx it', she did but cant prescribed medication for it, so wont keep a check on it.

Everyone keeps reading blood test results from about Dec 2009 and telling me he isnt anemic anymore, so dont worry.

I keep telling them, he took medication for it for 4 and half years, but the minute he stops, it will return he was anemic because of his limited diet and his diet hasnt improved. Argh!

Sorry Silver, went a bit off track there!

So if i change his bread to gluten for starters, would i see an improvement from just one change? or would i have to wait until i had removed all gluten do you think?

hmm, much like our care.

dd1 they couldn't help, becasue she eats well (hadn't actually asked to see a dietitian - was a case of "oh, ASD? yes, you'll need to see the dietitian")

dd2, who was a severe case of FTT (still tiny now, bless her, but I remeber that she only weighed 16lb when she was 16 months old! she was nearly 8lb when she was born...) so we got shoved otwards the dietitian again, despite me protesting not necessary. wenahd to fill out a 3 page food diary - I ran out of room to write down everything she ate , and t was all good stuff - curries, spag bol etc, with added olive oil, coconut milk and swee potato in the curry, extra chickpeas. we used coconut oil instead of butter. she regularly ate avocado/banana, was still breastfed - I couldn't get more calories into her, tbh! and her advice? fecking cow's milk - that would have solved it all

honestly think nhs dietitian's are a waste of space. I refused ot go back and see her, on the basis that I seemed ot know more about nutrition than she did (she was, after all, recommending I give upbrestfeeding in favour of cow' milk, citing dd2 needing more calories )

I ended up with "mother insists on keeping dd2 on a low fat diet" because I argued with the paed over it.

if you want something done.... do it yourself!

ooh, tangent from me too

you'd have to get him off gluten totally before you noticed a difference, i'm afraid. he would be likely to compensate by eating more chooc spread, or crisps, or similar - just seek out the high elsewhere.

dd1 is seemingly a bottomless pit at the moment - absoluely ravenous from dawn til bedtime - I am convinced she has come across some gluten or dairy and is now continually eating in the hope of coming acrossit again...

Im glad im not the only one who doesnt find them very helpful. Im going to ask to be discharged at next appointment. The appointments are so pointless, weight and height, then how are things going, just the same, ok see you again in 6 months. Here is list of things he should be eating, yes i know what he should be eating, its getting him to eat it thats the problem!

She asked ds why he didnt eat meat, he replied because i dont eat dead animals He then went on to tell her that food cooked in the oven has worms in it. Was quite funny, watching her frowning and trying to think of a reply!

sorry 1001 questions, once gluten free is the effect fairly immediate?

I think if gluten and/or dairy is an issue, then you will see effects quite quickly, but not necessarily positive ones for a while.

Dd1 was a horror I had to keep reminding myself that she must be going through hell (basically cold turkey) and couldn't tell us properly that she was feeling, quite frankly, pretty shit (she was pretty much non verbal until post gluten free)

It can take a while for the good effects to kick in, average around a fortnight, I think.

But the stronger the kick-off reaction (dd1 gets really quite aggressive - turns into a biter, and also very anxious) the more likely it is an issue, iyswim.

When we did the test, it was £60 I think. I'm not sure i'd have had the courage to go ahead without "official" say so, but others here have, I know.

Silver, £60 for a test, private?

It would be well worth £60 to give more of an indication, as quite an upheaval for ds.

Sorry, when I said a fortnight for the good effects to kick on, I meant more it takes that long for the kick-off reaction to die down.

It took a few more weeks for the effects to be noticeable with dd1, but she was so withdrawn, and so young. Iirc, within 6 weeks she came up to us seeking comfort when she banged into a table (never had before, just wailed where she fell usually) and was also able to show us where it hurt when we asked - also never done before, despite her knowing body parts.

Within 3 months her speech had really come on, and she was definitely a pot less dreamy, and more able to focus onus and pay attention, etc

Sorry, x posts.

Yes £60 private - you.can only get the test done by sunderland uni. You.phone/email and they send you a test pack and a huge questionnaire about poo habits, and poo appearance etc, about 10 pages I think.

You get the sample, freeze it, and send back in special jiffy bag. They can let you.know how long results take - sometimes they have a backlog.

Thanks very much Silver, that is really helpful, i will give them a ring and get the test done. Brilliant.

They are really nice and helpful, happy to answer questions etc.

Dh ended up testing too, and dss, as both have bowel issues and it is known susceptibility can run in families, and they really helpful cross referenced the graph results, etc so we could see similarities and differences between all three.

Oh, and they are totally clear cut on theory advice. Eg dss ended up testing positive for gluten peptides, but their advice was that since he doesn't have any kind of a dx, they wouldn't recommend a gf diet. You get pages of results, with loads of scientific explanation, and then just as you are despairing of ever understanding it, you get to the summary sheet where they tell you what to do.

Dd1's read something like "we strongly recommend a gf diet, as dd1's peptides readings are among the highest recorded. We would expect to see clear benefits for dd1"

Oh, and just to add, test was £60 3 years ago... might well have gone up. But hey certainly used to be ok about taking installments if necessary.

Great the perfect solution to my problem. Thanks again Silver, will let you know how we get on and pester you for more advice!

No problem, anytime

I would recommend getting a book called "diet, intervention and autism" by marilyn le breton out of the library. She talks a lot about how to set about going gf, and also has a section of recipes etc

Oh book sounds good if we decide to go free and recipes, might give the whole family a go, if the recipes are not too terrible!

Im off to bed now Silver, early start, thanks ever so much for your help. Good night

Just to add that the researchers are no longer at Sunderland Uni now. Although still based in sunderland they have launched under a new name - espa research
www.espa-research.org.uk//

As silverfrog says, it depends on the individual, but it's really an all or nothing diet, so just removing bread wouldn't really be enough. You also have to be careful of foods labelled 'gluten free' in the supermarket, as often they aren't - I think under EU law if a food contains less than 1% gluten it is allowed to be labelled gluten free. That's fine for celiacs, who can tolerate very low levels, but not for children with autism who have problems metabolising it properly. For this reason I don't allow my son to have 'gluten free' lunches provided by his pre-school, and send him with food from home. There's just too much risk of dodgy foods being included, not to mention the cross contamination risks in the kitchen. You'll also need to think about gluten/milk in the environment - toothpaste, paints, glue, playdough etc.

Casein (the protein in milk which can also be a problem) is supposed to only take a few days to exit the body once it is eliminated from the diet, but gluten is supposed to take a few months (longer the older the child is).

I would really do the urine test first and if the results indicate a problem, then remove one food at a time and keep a note on changes in behaviour. This is a good checklist:
www.autism.com/pdf/individuals/atec_form.pdf

I would also do an allergy test first as well, but only on the off chance that the result might mean some gluten/milk free products on prescription.

We also avoid msg (in all it's guises) and aspartame, both of which are excitotoxins and not thought to be good for children with ASDs.

I meant to add that a negative allergy test (the test your dietician is talking about) does not necessarily mean that gluten is not a problem - only the urine test (from ESPA) would clarify that.

Catski, thanks very much for info and link.

Not sure about anything else but my DS is coeliac and the doctors refused to do the tests for 2 years because he was tall, red cheeked and thriving - it was only because I threw my toys out of the pram they did the tests and was amazed they came back positive. I kept explaining he looked so healthy because he adores meat and veg ....