Following on from the fish oil threads ...

[moosemama]

Was just on another thread discussing the veggie omega oil supplements that I started the whole family on just under a fortnight ago and realised I should share it with everyone here.

We are all veggies, so couldn't do fish oils - quite apart from which I know for a fact I'd never get ds1 to go near, let alone eat them. We used to buy a veggie omega oil blend when the boys were toddlers and it definitely helped with mood and sleep issues and if we missed a dose or two we really knew about it. (We were unaware that ds had ASD at this point, I was just trying to give them a properly balanced veggie diet). We had to stop buying it, because the cost became prohibitive for us.

Recently I was reading again about the importance of essential fatty acids for good health and how veggies tend to be very depleted, as even if they have an excellent diet, the form of EFA available in vegetarian food is not easy for the body to metabolise. The new supplements come from tank grown algae rather than flax/linseed and contain a balanced blend of all the necessary omegas that are easy for the body to metabolise.

Anyhoo, the outcome was I bought some of this stuff on their 3 for 2 offer and resolved to try it on all of us for at least two months.

We are now a couple of weeks in and I have already noticed a difference, particularly the dcs. I think the effect might be more dramatic, because we were all so depleted beforehand.

The first thing I noticed was that ds1 is going to sleep more quickly (cue him making a liar of me on his school trip, as I've told them he will be awake for hours after everyone else and will be awake by 5.30 am not matter what time he goes to sleep ).

I have also noticed that he is calmer and more emotionally stable and resilient. He has handled the whole bullying thing so much better this time. Two weeks ago after an incident he was in meltdown all Friday night and pretty much all weekend, this time he was very upset for a couple of hours, then it was over and done with and he has talked calmly about it since.

He has been asking me for cuddles! This is a biggie, he did ask for one about three weeks ago and I remember wondering if he was having some sort of developmental leap, but this is so much more. I daren't say it, but we are almost seeing an emergence of the gentle sweet boy we used to have before he started school. Obviously its not all that, but we are seeing lots of glimpses and there is so much more affection that there has ever been.

As for the rest of us:

I have been really tired, but not suffering from the muscle aches and bone aching exhaustion that tends to accompany stress due to my CFS. What with all the IEP, Statementing and bullying stress, this is extremely unusal.

I have achieved more around the house in the last week than I have in the whole of the previous month.

An added bonus is that my skin looks so much better and has lost that dull, tired effect you get when you have been stressed and exhausted.

Dh has suddenly lifted out of his bad tempered, mid-life crisis, depressive mood and is back to smiling - laughing even - teasing me and the kids and being able to focus on his work.

Ds2's (6) chalazion (infected cyst in his eyelid) sponaneously popped and drained on its own in the middle of his literacy homework. He has never been able to get rid of these without heavy, repeated doses of anti-biotics before.

Dd (2 yrs 2 months) seems to have made a small leap in her cognitive skills and is suddenly getting the difference between me, you and I as well as understanding more complex instructions.

Now a lot of this might be coincidental and it could be that I'm only noticing some of it because I'm looking - but its enough for me to be convinced that continuing with the supplements is a good idea.

The best thing about them is that the are tasteless and odourless, unlike the fish oil. I split and add one capsule to the dc's vitamin syrup in the morning and then they have a second one mixed into a yoghurt after school. None of them have even noticed its in there.

Anyway, I just thought I would share it with you all, as I know some of you are struggling to get fish oils into your dcs and it does seem that this might be a genuinely viable alternative.

Brilliant news! Thanks for sharing.

This is so wonderful to hear that something so easy can make a huge difference to the whole family.

Very interesting. The product you linked to does contain DHA. I think it is DHA which the seed based ones lack....

Indigo, that's it, that veggies can't get DHA from their diet very easily and flax/linseed only provides us with ALA rather than EPA, DHA and ALA.

I was quite sceptical, but thought it was worth a try after doing a bit of reading about the importance of omegas, so its come as a very welcome pleasant surprise.

I guess we must all have been extremely depleted for it to have had such a noticeable effect this quickly.

I give DS Omega 3, vitamins and mineral orange flavoured syrup. It definately makes him more interactive. I didn't tell his teacher to start with and she noticed the difference within a day!
I'm wondering if there is anything else affecting the absorption of various nutrients in the body - because surely it should take a build up and all our experiences appear to be almost instant?

Cinnamon, that's what we do. Omega capsules in haliborange orange flavoured vit and mineral syrup.

I'm pretty sure my ds has a leaky gut. He was tested for coeliacs because his digestion is so bad. It was negative, but we were advised to treat him as if he has it anyway by the Paed and Dietician, as his food diary showed a clear connection between the gluten he ate and his symptoms.

He's such a skinny little thing, nothing we do puts weight on him, so there's definitely malabsorption going on. He has improved a great deal since going gf though. I do wonder whether all the vitamins, minerals and EFAs in the world would have any impact at all if his gut hadn't already started to heal.

I'm hoping the longer he's gf and has a really good diet plus supplements, the more we will see positive outcomes. Its really a case of playing the long game, as he's had so many years of being malnourished from the malabsorbtion, that I think we need to get him back up to full health before we see the greatest benefit, iyswim.

I've been looking into changing my DSs diet too, to remove gluten.
When he was a baby he came up in eczema on his cheek and bum cheek.

When he had things like rusks he got a rash around his mouth. We thought he was allergic to wheat so had him tested for allergies. Only thing he turned out to be allergic to, was egg!

Maybe he has a problem with gluten? I swear food has something to do with it, so will slowly remove things and see if anything works. I know things like Gluten removal can take up to 3-6months to fully leave the body though so we'll see.

Other option, a friend suggested looking into holistic medicine/therapies!

Shame we can't give them any higher doses of the Omega - it does wonders compared to usual.
:)

Hope GF works for you, moose. Unfortunately our DS2 was tall and average weight until we went GF for 7 months when he was 4. He ate loads of GF stuff and didn't gain any weight for the whole time. There was no improvement in behaviour so we went back to gluten. He's never caught back up, is now short and underweight at 11. We've now resorted to Complan, but too early to see if it has any effect. Fish oil daily since he was 5 (after GF finished) with good results. Is your veggie one cheaper than eye-q? Now it's the norm of course, but we stopped it once just to see and soon went back to it!

or was it homeopathic

Hi Ellen,

My ds has always been tiny for his age and ridiculously skinny. We did a trial gf period on the advice of the GP. He went up a shoe and trouser size within a month and seemed a lot more 'with us' iykwim.

Four months later we saw the paed for the first time about getting him assessed for ASD, he wanted to do a coeliac test and we had to put him back on gluten for six months. After three months we went to the GP and begged them to rush the test through, because ds was really suffering. He had skin rashes on both cheeks, reflux and constant diarrhoea. The GP organised the test, but ten days before he caught a horrible d&v bug and hardly ate anything for over a week, let alone enough gluten to register on the test.

We decided not to retest as we just wanted him back off gluten by that point and it would have just been cruel to carry on for another couple of months so they could repeat the test.

At the start of the year, ds was the smallest boy in the year, but since then he's grown enough to be about the third smallest. OK, its not a huge leap - but its very important to him.

I don't know how much eye-q costs, but from a quick google I'd say the veggie stuff is more expensive. Its just under £15.00 for 60 caps, but they always have buy two get one free deals on. I haven't tried looking around for a cheaper supplier yet.

We always thought it was worth trying the GF cf diets, I know they work for many with ASD. The omega oils definitely work for us despite there being no ADHD. DS 2 is very active however, more energy used playing on the computer than an average football match. Which is why he's so thin, we think. Also very fussy and very small appetite.

Your poor DS? Is there any advantage to getting coeliac DX? GF on prescription etc? We used to get it on prescription just for the ASD reason.

Where do you get your GF foods from or do you make it all?
I've just had a quick look at Tesco's free bread and it all contains eggs!

The prescription food is about the only advantage to be honest and we tend not to buy a lot of actual designated GF food. He has a few treats for his lunchbox, if I'm not up to baking myself and we buy some bread for his packed lunches, but he only gets through a loaf a week if we freeze it in half loaves - it goes off quickly otherwise. Other than that he just has the odd bit of GF pasta really. I tend to google manufacturers of normal food and enquire whether or not foods that don't actually list gluten on the ingredients are actually GF.

Its the sneaky things like malt vinegar and soy sauce that caught me out to begin with, but its pretty much second nature these days. We are even lucky enough to have a local chippy that cooks chips in a separate fryer for coeliacs and also does gluten free batter, so that's nice for a treat every now and again.

They refused to prescribe without a positive test result. Which I thought was really tight, considering it was them telling us to keep him gf!

They're changing the labelling in the UK this year though, which means a lot of foods that were previously listed as suitable for coeliacs will no longer be able to say that. Apparently its because they've changed the permitted amount of gluten from 200 ppm to 20 ppm for a produce to be labelled suitable for coeliacs or gluten-free. Walkers crisps are changing their labels over gradually over the next 12 months, as this comes into force in January 2012.

Have you heard of the Sunderland test cinnamon? There's a lot of research going on that DC with ASD may process gluten and or casein in such a way as to cause morphine type highs across the blood/brain barrier. Send them a urine sample while on normal diet and they tell you if there are any abnormal spikes of gluten and casein peptides in it, so whether they recommend you avoiding one or the other or both. Not on pc so can't link, but google it if interested.

Sorry, Cinnamon cross-posted.

I do a fair amount of baking, but we do buy a few bits from Tesco and also Sainsbury's and Waitrose on occasion.

I thinkg it would probably be very hard to find egg free / gluten free food, as one of the problems with gf food is that it doesn't hold together very well and needs egg to bind it. You could try asking in the allergies section of MN, there are some very experienced people on there whose dcs have lots of different allergies.

You do have to watch it with some of these so called Free From ranges - I don't really trust them and am an inveterate label reader.

I was reading an article the other day where someone was reading the back of a packet of Walkers crisps that said 'suitable for coeliacs' on it, but listed wheat flour in the ingredients! They even had a photograph of the packet!

These are the Sunderland Test folks.

If you email them, they'll send you a pack with instructions on how to get a urine sample, freeze it and send it back for testing.

I've never done it because were pretty much 100% ds has a problem with gluten anyway and I am far too chicken to face telling a nine year old, cheese loving vegetarian that he now has to go casein free as well as GF.

The prescription for Sunderland GF cf diets was dependent on a sympathetic GP. We used to get GF wheat flour to make one loaf/ week in a different tin in the breadmaker. £9.00 a pack! Very expensive loaf of bread. Back then tesco didnt do gf, only waitrose did round here or health food shops. DS hated normal GF bread! He's a wheat junkie, which is why we thought GF would have an effect. No such luck!

We do keep x posting!

Thanks guys, that's great help. I'll look into that site and hopefully get something sent off.
DS can have egg now, but he hasn't been retested for a while on the allergy side, so we try not to give too much too often (only in cakes etc, doesn't eat egg as a meal!).
If I give him breads etc with egg in, think that might overload and possibly build up the allergy again.
Apart from that test you mention, think I might ask the GP for an update test to see if he's fully outgrown the agg allergy.
I'll also speak to the allergies MN
Thanks :)