Urine Analysis

[Bagpuss]

I know I've asked this before, but can't find the info.....can anyone give me the info regarding the urine analysis at Sunderland?

 

Thanks

 

Ooooh, and any advice re actually obtaining said sample?

 

Sorry, just realised this should maybe have gone in Diet section?

Edited July 29, 2007 by Bagpuss

[MichelleW]

This is the website:

 

Sunderland University

 

You can also get them to send a copy of their booklet (was �4) . I saw Mr. Shattock just before christmas - he gave a very interesting presentation.

 

updated: for advice about getting the sample - all I can think of is to use a freshly washed (very hot soapy water and rinsed well) potty. With my J it shouldn't be too difficult as he is a boy! I've yet to get it done - been waiting about 2-3 months for the GP to let me know if it will be funded by NHS (currently �60) I think I should have just paid for it myself - would have been much quicker!

Edited July 29, 2007 by MichelleW

[Bagpuss]

Thanks Michelle <'>

[MichelleW]

Thanks Michelle <'>

 

 

just to let you know I updated my post, instead of adding on a new one!

[Bagpuss]

Thanks again. I've emailed them to ask how I would organise having her sample tested.......tbh, I think I'll just pay for it myself. Been meaning to do it for such a long time, but it got put on a back burner I think I'll have to buy myself a potty, and see if I can persuade her to use it (she thinks they are for babies, so not sure it'll work, but can't think of anything else )

[MichelleW]

How about getting her to do it in a large cup or bowel. as long as it is clean, it shouldn't matter. They send you a questionnaire first. When they have received the questionnaire and payment, they will then send out the sample tube and further instructions. I'm not sure what the timescale is before you get results. I also want to get DS2 done, but I'm not sure if they will test without a proven dx of autism.

[Bagpuss]

Hmmm, maybe worth a try, although I think she'd find that more problematic than the potty. She swallowed a marble once, and A & E advised us to have her poo in a sieve for a few days..... Not a hope

 

I "think" I read it took about a week from them receiving the sample, although don't quote me Been reading through alot of information today, and could of got muddled up with something else (trying to find someone to carry out allergy testing on me, for various reasons)

[Bagpuss]

Yes, just double checked, tests are done in a batch, with current waiting times 1 week, and your right, the questionnaire has to be filled in and returned first.

Edited July 29, 2007 by Bagpuss

[Bagpuss]

Not heard anything back as yet. Has anyone else contacted them via email to arrange analysis.....and if so, how long before you got a response? Unsure if I should ring them or not.

[flipper]

Not heard anything back as yet. Has anyone else contacted them via email to arrange analysis.....and if so, how long before you got a response? Unsure if I should ring them or not.

 

I contacted them by email on the Friday, and Paul Shattock called me back on the Monday.

Unfortunately, I hadn't expected such a fast response and was on Holiday!

 

When I phoned the following Monday, I spoke to Paul, and he sent the booklet which arrived in a couple of days.

We sent of the form last Friday (with the cheque) and received the sample bottle yesterday.

 

We'll hopefully get the sample collected on Sunday morning and post it on Monday - I'll let you know how long the next step takes...

 

Phil

[Bagpuss]

Thanks Phil. Got all the info through this morning. Seems we've had a delay with the mail, and I also got alot of mail posted earlier in the week. I never thought to include my phone number when I emailed. I'm going to fill the questionnaire in when I get back off hols. Good luck to you

[flipper]

Thanks Phil. Got all the info through this morning. Seems we've had a delay with the mail, and I also got alot of mail posted earlier in the week. I never thought to include my phone number when I emailed. I'm going to fill the questionnaire in when I get back off hols. Good luck to you

 

Sent sample off on Monday by Special Delivery (because the post has been bad lately)... got result back today (Friday).

Confirmed high levels of IAG - so say a Gluten free diet is likely to be helpful.

No traces of milk protein - but C's been dairy free for ages anyway (we use goats milk).

 

Very impressed by the rapid turn-around... and now we know where we stand...

 

Phil

[Bagpuss]

Thanks Phil. I'm going to get our dd's filled out this week and hopefully posted by the weekend. Must admit though, I'm abit worried if it does show up intolerances.....the majority of her diet is bread and milk It is so restricted, and I'm unsure how we'd manage to implement something new or different, and know so little about this area, so feel abit lost. There are some areas we are concerned about though, which we feel need to be checked out, including the dark circles under her eyes and her appalling flatulence

 

Can anyone else share any experiences they have had of urine analysis and changing diet?

[Bagpuss]

Well, I've managed to b****r up the first sample. Misread the instructions, and thought it had to be frozen before posting, not immediately after, so I've emailed and asked for another sample bottle

[MichelleW]

I haven't been around for a while - had a busy few weeks! I sent off a letter to my GP 3 months ago to find out if they will fund it. Though I'm happy to pay �60, I still thought it would be worth seeing if NHS would fund it - not realising how long they would take to get back to me. I phoned the practice manager, who then said they needed more info, but they couldn't look at the website address I provided! They hadn't written to me to tell me this! They want a fax from the research unit, so Paul said he will fax them next week when he is back from abroad.

 

I'll give them a week before hounding them!! I feel as though I might as well pay for the test - but I also want to get little one tested. In the last week I have had a trip to a&e with both boys- both abdominal pain. J's severe constipation has returned even though he is on two laxatives daily. And DS2 had severe colic type pain. As DS2 is essentially non-verbal, I didn't know what was wrong with him. J's bowel problems started about the same age that DS2 is now - so I'm a little concerned that it may just be the start of the same problems.

 

Now, regarding changing foods to gluten/dairy free - I've done it a few times just to trial different foods without actually going completely gluten/diary free. I tried swapping different products with great success. however, I have returned back to the gluten/dairy containing foods so that the coeliac tests, and the future urine analysis results are not affected.

 

In general, most things are replacable and most things don't taste too bad either, but are more exphensive! The only things I haven't seen are dougnuts! And the dairy free cheese I have tried isn't good! Most supermarkets have a good range of products but you need to check carefully, as some are gluten free or dairy free but not always free from both dairy and gluten. Remember that basic healthy foods like fresh meat, veg, potatoes and rice do not contain any additives or gluten/dairy. Also if something is wheat free, it doesn't mean it is gluten free! Barley, oats, rye, bulgar, etc. all contain gluten.

 

Hope this helps!

[Bagpuss]

Thanks Michelle. Youngest dd's diet consists mainly of bread, milk, and yoghurts........which I'm worried I may have probs replacing, as she won't try anything which looks "different".

[MichelleW]

What I did was to keep the old containers, say a milk carton, then first week make up 75% with normal milk and 25% soya milk, week 2 50%:50% etc until you are on 100% soya milk. If she shows signs of detecting it, do it more gradually so she doesn't notice. apro soya do yoghurts. Again, you could keep old yoghurt cartons and fill them with a ready made mixture, or 100% soya yogurt. I noticed on TV that Benacol are releasing a dairy free yoghurt drink (like actimel etc). Also in the long life milk section where the ready made flavoured milks are, you can get chocolate soya milk ( so good) which can be substituted for chocolate milkshake or milk. In Asda, they do apro soya milkshake ( strawberry, banana, chocolate) and maybe still do rice milk in small cartons ( ideal for lunchboxes). I haven't looked in asda for ages! Also health food shops also do the small cartons of apro soya milkshakes. In the deserts section where rice puddings are, you can get apro soya puddings ( J loved these when he was smaller).

There are lots of different varieties of gluten/dairy free breads/rolls. The last lot of rolls I got I used with "free from" sausages to make hot dogs - and they went down well. Bread isn't quite as easy to change over. I've just eliminated it and he doesn't ask for it if I haven't got any on view! he gets his carbohydrates mainly from wholemeal basmati rice and gluten free potato products. However, he still has crumpets and doughnuts occasionally which will be my main problem. You can get good "free from" pasta and muffins in sainsburies though.

[Bagpuss]

Thanks for all the info Michelle. I would find it impossible to eliminate bread from her diet. She has either marmite toast or roll for breakfast, lunch and tea

[Bagpuss]

Well, sample is in the freezer, ready for posting later Another parent from local support group told me that the cf/gf diet was life changing (in terms of the dedication needed), although she knew of a parent who had seen wonderful results form embarking on it...................hmmm.......unsure I'm ready for life changing at the mo I can't even remember what day my eldest goes back to school next week

 

Will post again when the results are back

[flipper]

Well, sample is in the freezer, ready for posting later Another parent from local support group told me that the cf/gf diet was life changing (in terms of the dedication needed), although she knew of a parent who had seen wonderful results form embarking on it...................hmmm.......unsure I'm ready for life changing at the mo I can't even remember what day my eldest goes back to school next week

 

Will post again when the results are back

 

It can be a bit tricky finding suitable foods, but there are plenty of options out there.

Bread is the hardest to replace as all the gf ones tend to be quite hard - not like real bread at all - but work well as toast.

GF pitta breads are pretty good - virtually the same as normal, so worth considering.

 

C has been on a cow's milk-free diet for a while as we were aware of an intolerance, but we use Goat's milk - and the urine test showed no signs of casein. Sunderland have told us that goat/sheeps milk is very close to human milk and very well tolerated, and it doesn't really taste any different to cow's, so there's not a problem there (unlike soya which is very much an acquired taste). Goat/sheep cheese is also available and while it looks slightly different, few will notice any difference in taste (on gf pizza bases for example).

 

We feel we've seen a change already, in just a few weeks. C is asking more questions, and is responding to questions too (such as "Where is your car?" responded with "Under bed"), and eye-contact seems to have improved - at least with family. He's also trying more imaginitive play, instead of a repetitive loop of phrases and actions.

 

The worst thing is the cost - everything is more expensive! If you have a bread machine it's worth a try but we weren't happy with the results...

We've pretty much had the whole family on gf/cf (to avoid risk of giving the wrong food or "contamination").

 

Like others, he had a limited diet - Bird's Eye Chicken Dippers for example (only that brand as they look different) - but we might be slowly winning that one, if only because starvation isn't an option.

 

It's not really as hard as it might seem, you just have to get into the mind-set and be really rigid about it, though that means reading every packaging label very carefully. Oh, and make sure any grandparents/friends/potential babysitters are fully aware that compliance must be 100%, you don't want a well-meaning Grandma giving into pleading eyes "Oh but he looked like he really wanted it..." (which is why our 2 NT girls are also having to endure the same diet, at least in C's presence).

 

Phil

[Bagpuss]

Thanks Phil. Our youngest dd is similar in that her food has to look the same. She won't tolerate different bread, nuggets, etc. Even if a nugget has some brown on it, she won't eat it, believing it is burnt, ditto with toast. When we put marmite on her bread or toast, if we put on slightly too much, she won't eat it. When my mum first looked after dd for a full day, I left these long winded instructions about what to feed her, and she soon realised that to not follow them wasn't an option...... We tried the "you'll sit at the table with the rest of us, and eat what we are eating" malarky............she didn't eat. I've tried disguising food, in other foods, but with no success. Eventually I spoke to her peadiatrician who advised us that it was better she ate something, rather than nothing, so long as she didn't become anaemic, which she hasn't. I chilled out after that, and tried to encourage healthy options, but if she wanted a marmite sandwich for breakfast, lunch and tea, that is what we gave her. I'm intrigued to see what the results will show, but unsure how we will go forward.

[Bagpuss]

Just a quick update with the results which came yesterday.

 

No probs with casein, and only trace elements of IAG found. They don't feel a gluten free diet would be beneficial, as the biggest peak was not IAG, but an unknown compound, which is predominant.

 

Feel huge relief.

Edited September 2, 2007 by Bagpuss

[oxgirl]

Just a quick update with the results which came today.

 

No probs with casein, and only trace elements of IAG found. They don't feel a gluten free diet would be beneficial, as the biggest peak was not IAG, but an unknown compound, which is predominant.

 

Feel huge relief.

 

 

I understand what you mean about huge relief, that's a really good result, well done. <'> That's one less thing to have to worry about.

 

~ Mel ~

[flipper]

Just a quick update with the results which came yesterday.

 

No probs with casein, and only trace elements of IAG found. They don't feel a gluten free diet would be beneficial, as the biggest peak was not IAG, but an unknown compound, which is predominant.

 

Feel huge relief.

 

That's great to hear - and only serves to support the theory that there is no "one fix for all" solution to AS/ASD.

For us, oddly, we felt great relief when the results came back positive for Gluten as it gave us something really positive to work on (although GF is very hard work).

We also had a negative for casein, but we know C is allergic - so we were well on the way to a CF diet anyway.

 

Phil

[brooke]

Glad its all ok <'>