Got the uni of sunderland results for DS1, who can help me make sense of them?

[kt14]

Have just opened the envelope and am slightly in shock. Results showed a presence of IAG in DS1's urine which indicates that DS1 may have "leaky gut" and would probably benefit from a gluten free diet. Casein, and therefore dairy was inconclusive.

Where to start, am really ignorant about what contains gluten and what doesn't, can anyone recommend anything I could read? Jimjams, i know you're a pro where this is concerned, how quickly did you see results with your ds'? And should i now get DS2 (12 mths, so far seems NT) tested, just to see if he has the same thing?

In case anyone is wondering what on earth I'm talking about, the uni of sunderland do urine testing for people with ASD to determine whether a metabolic problem could be causing or exacerbating ASD symptoms. DS1 is a bit borderline language disorder/ASD so I sent it off in the spirit of anything being worth a try. Now it looks like i've opened a can of worms but if it improves things for DS1 I'll be delighted!

[silverfrog]

I used this book to start off dd1's GF/CF diet. I found it very useful on the basics (what does/doesn't contain gluten) but some of the addresses given are out of date now. Lots of useful stuff, though, and a recipes section too.

I have also read Special diets for special kids - also useful,and again has recipes.

dd1's casein result was inconclusive, but she does react to it (tested via exclusion) so we keep her ostly Cf too.

don't know about testing younger siblings - i have kept dd2 GF/CF as a precaution (she is now 19 months, we started dd1 GF when i was pregnant with dd2) so not sure when/how I'll go about testing her...

the supermarkets all do quite a good range of Gf prducts (Sainsburys is the best) but you do have to watch out for "flavourings" as they contain MSG (also a no-go on GF diet)

[kt14]

thanks silverfrog, have just ordered that book!

Think we'll try and keep DS2 GF too, makes sense to do so if I'm cooking for DS1.

And I didn't realise MSG and aspartame were linked too, but the effects of removing aspartame from DS1's diet (I discovered it a little by accident) amazed me. Sounds dramatic but I felt like I'd got my little boy back, with immediate restored eye contact and joint attention. That's what prompted me to do the further testing, realising how much difference diet made to DS1.

Have a peadiatric appointment next week, wonder what he'll make of all this!

[WendyWeber]

The big supermarkets have lots of gluten-free products now, & they usually keep them together so it's easy to go through them - mostly cereal-based things (of course!) but Sainsburys also have frozen things like pizza & sausages. (DD2 has IBS & has been on gluten-free for a few months now)

Good luck

[WendyWeber]

Oh, and when you're looking out for MSG it's sometimes shown as 621 (or E621)

[kt14]

thanks Wendy, that's really helpful to know!

[silverfrog]

yes, msg and sweetners are the harder things to exclude, tbh. Loads of supposedly ok things (like fruit bars) have "natural flavourings" in them - aka MSG 9which does occur naturaly, hence being able to label as natural).

whenever dd1 has a relapse, it is normally because of an MSG additive, rather than gluten (I get a bit shoddy about reading labels sometimes ), and the most frustrating bit is not being able to have "normal" snacks due to the additives.

paeds have been lukewarm ime. I get a lot of "oh, yes, some people say it helps a little" - I put this down to them not wanting to admit medical need as it is possible to get GF stuff on prescription if you have a doc onside - and the costs do mount up! (my GP won't oblige - passed the buck to a dietician who took the above line - so we are stuck with the costs, which have been well worth it)

we have managed to find reasonable alternatives for most foods, but the GF bread in shops is mostly really horrible - homemade is better.

[kt14]

Just out of curiosity, what happens if your child does have food containing anything off limits? DS1 went totally hyper after "pink pudding" was given to him at the CDC, lord knows what that contained. He was pacing up and down the room, chanting. Quite unnerving to see, he's never done it before or since.

Do the effects wear off quickly if they have something containing gluten, MSG or the like, or is there any permanent setback?

And wow, thanks to you all, I've gone from clueless half an hour ago to feeling motivated to get started.

[silverfrog]

the book explains a bit more, but if dd1 has something off-limits, she can have a variety of reactions.

if it's calpol (or similar) - conatins sweetners (even the sugared version) and flavourings and colourings, she usually gets really hyper and is often awake in the middle of the night (usually unheard of).

night wakings sometimes happen for other thigns too (flavourings) but rare.

she gets quite silly, and hyper - very giggly, and won't listen/comply like she usually does.

the worst bits, though, are the come-downs, when the stuff is leaving her system. she can get very emotional, and teary - cries at the drop of a hat over small stuff, like me misunderstanding what she says (happens regularly, and normally she would try again) - it's as though it's the end of the world suddenly.

everybody's different, though.

[jimjamshaslefttheyurt]

Have you spoken to Paul Shattock? Do if you haven't already.

I saw changes almost immediately. Within days. In both ds1 and ds3.

DS3 had a positive result to casein and seemed to do well on goats milk (still has casein, but a different form and is digested more easily).

DS1 has never seemed to react to casein at all. We've tried various exclusions but no difference. So he has casein (not huge amounts). Gluten we see very big changes if he has it so he's strictly gluten free.

Agree about MSG.

[kt14]

Thanks jimjams, was literally about to phone them, I wanted to know what they thought about having DS2 tested at this stage. Plus I'm just not scientific enough to understand all the terminology in the results. They could do with enclosing a guide for the less scientifically gifted - a simple "cut out gluten and casein and your child may improve" would have done me!

To do list -

1. Call Paul Shattock
2. Order breadmaker - think I will be needing one..
3. Visit Holland and Barrett for gf products to keep us going over weekend
4. Do next week's online shop - with a difference!

Now the initial shock has worn off, am actually now feeling slightly excited that I may finally be able to do something to help ds. We'll see!