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Jadensmum

Gluten / Casein free diet

Is your ASD child on this kind of diet?  

87 members have voted

  1. 1. Is your ASD child on this kind of diet?

    • Yes
      22
    • Yes
      3
    • No
      55
    • Only gluten free
      5
    • Only casein free
      2


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Hi everyone,

 

Have been reading a lot about this over the last few days and I have sent off info to have a peptide(?) think that's right - test done for Jaden. Obviously willing to try anything that will help him and just wondered how many of you have your kids on the same diet?

 

Thanks

 

Denise

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Hi Jadensmum -

My son's been gf/df for about 3 years now, and it has helped him enormously. I've posted loads of stuff on this, so won't bore everyone again, but if your interested the other threads are all in this 'area' of the forum and a quick search will call them up...

Several 'quick tips' for if you do try it:

Involve GP from day one. If he/she feels involved then your much more likely to get referrals/scrips/blood & urine tests etc when you need them...

Do Dairy first. It's easier, and any positive effects appear more rapidly...

Get referral to a dietician, especially if your kid's 'faddy', to make sure you've covered all bases if supplements are needed...

Spend a month or so introducing the 'new' foods slowly, and phasing out the old ones. Less chance of major catastrophes, and you know before hand what will and will not be acceptable... All of the manufacturers do 'sample packs' (some are more generous than others, but all are worth a shot), which are really useful during this 'dummy run' phase...

Contact your regular supermarket h/o for own brand food allergy lists. You may have to cross reference (depending on supermarket) to get a comprehensive list, another good thing to do during the 'dummy run' period - by the time it really matters, you'll know them off by heart!

 

Hope thats helpful

BD :D

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Thanks - your reply was really helpful - have spent quite a bit of time reading the threads on here as I'm really interested in this - I'm quite a believer in "you are what you eat" but I'm also quite apprehensive also as all of the foods Jaden loves are mostly dairy/wheat etc based - so it would be a challenge!!

Will speak to GP, although we have never actually seen our "family GP" as everytime we go we get a different one! Have already rang paed though to speak to her and ask her opinion as our next appointment isn't for 4 months. At this appointment she will hopefully be prescribing melatonin aswell - so I might be able to get a bit of sleep!

The cost of this diet is also quite worrying (still waiting for DLA and single mum)- as he does have a very healthy appetite! (He's going to be like his dad - eat as much as he likes - and not put a bit of weight on!)

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1)all of the foods Jaden loves are mostly dairy/wheat etc based - so it would be a challenge!!

 

2)The cost of this diet is also quite worrying  (still waiting for DLA and single mum)- as he does have a very healthy appetite!

3)(He's going to be like his dad - eat as much as he likes - and not put a bit of weight on!)

1) This is quite common: kids often like the 'buzz' they get from gluten/casein and fix on foods that provide it. I've heard some ladies have similar obsessions with chocolate! Another good reason for doing it in stages, as 'cold turkey' really can be quite dramatic. Even in the (relatively) short time that we've been doing it, availability and quality of the alternative foods has improved dramatically... I even 'binned' the breadmaker a couple of months back 'cos there's a bread available on scrip that's even better than the stuff I was making. Once you've got over any 'addiction', taste shouldn't be too much of a problem...

2) No getting away from it, the shopping bill does rise... The real expense is with pre-pack (convenience) stuff... The more you cook from scratch yourself the cheaper it is, but it's easy to fall into bad habits (as we have). Having the GP on board really helps; scrips for bread/pasta/biscuits/cake mix leave more money for other 'treats', but it still costs a bomb. Very best re DLA...

3) The Jammy Bleeder!! I cooked Ben Three 'Banoffi Pancakes' tonight, and he still got the biggest half of the ONE I 'allowed' myself! I could feel my T Shirt tightening just from cooking it, let alone eating the ###### thing!

 

Oh, don't expect any support from the Paed - they tend to take the 'establishment' view as far as diet intervention goes. Who knows, though, you may strike lucky!

Best of

BD :D

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Can't comment on using gf/cf diet for autism but you might find the following message board useful if you decide to go down the gluten free route:

 

The Boardhost Gluten Free message board

 

It is a message board used by lots of people on a gluten free diet. Most of them are coeliacs but the information would be relevant to you as well. It is a friendly board where peple are happy to give advice.

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You're far better at it than me. Even after all this time I still can't even do links so starting a poll would be waaaay behind my capabilities. :wub: I'm what is known as "technologically-challenged". :lol::wub:

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Hi Denise,

 

I was just wondering, where did you send off to for the test?

 

I think my son, has some nutritional intolerances and have just sent an email to the ARU at Sunderland Univeristy to request an Urinary Analysis. I have no idea how long they take to respond to an email, so I'll just have to wait.

 

Does anyone know how much the urinary test at Sunderland costs...or if there are other places I can get the test done.

 

I do have an appointment with the GP comming up, but with so many other issues I need to raise, I don't think they will refer me to all the specialists / tests that he needs ( this is the first appointment since Asa was given the AS dx) and at least it something I can be doing for myself....feeling pretty useless at the mo.

 

Regards, tizz

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Hi Tizz -

Not sure of costs of test now (was 30 quid 3 years ago), but your GP can refer so it costs nothing. Try them, they might surprise you... The other good thing about doing it that way (even if you pay, ask the GP to be involved for this reason) is that the GP then feels some degree of responsibility regarding the outcome, and is therefore much more likely to be supportive about stuff that's available on 'scrip if the need is indicated.

Good luck, and very best with all the stuff that comes up following DX. DON'T feel "useless" - it's one hell of a learning curve and a hell of a thing to get your head around... Take your time, and take it easy.

Best

BD

PS: Welcome to the forum! :D

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Hi Baddad,

 

Thanks for the warm welcome to the forum and for the advice about getting the test. I will mention it to the GP, but tell them that I've already emailed the ARU to request the urine analysis.

 

Thanks, tizz

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Hi Tizzmeclare,

 

I called the University of Sunderland and they sent me out a form - I completed that, sent it back with a paed report and they now have sent me a tube for the urine test - it has only taken a week so far. However the cost has risen to �60!!!!

I have informed Jaden's paed - but but not the doc yet as we are part of a surgery where you can only see who's available on the day you call so we've never actually seen our "family GP." But it is something I will do.

I am really interested in this side of things - if the results show that he won't benefit from a GF/CF diet I am sure he is intolerant of something - he is only a little boy but he passes wind like a man!!! Plus he sometimes seems to be in a bit of pain. Not looking forward to the rising cost of my shopping bill though!! (Still waiting for decision on DLA- but that should help)

 

Hope that helps

 

Denise

 

(Can't do links - but I know it's on this forum somewhere!)

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Hi Guys,

 

Well I got Asa's report back today from the ARU at Sunderland and they recomend both a gluten free diet and casien free diet ( but to test the casien free diet for 4-5 weeks) as there was an anomalie on the casien results.

 

I did mention it to the GP ( thanks very much for that advice) and it went better than i expected! he offered to provide the gluten free diet on perscription if the resluts came back that he needed it....and I've got an appointment tomorrow, so its off to see if he keeps to his word!

 

I've also ordered some eye Q from the chemists and I'm going to start him on those aswell....Has anyone got any suggestions as to weither:

 

1. Its ok to start the eyeQ at the same time as starting the gluten free diet?

2. Weither its better to graduate the diet or just go for it...

 

thanks again for your advice about involving the Doctor, that was a great help.

 

Regards, tizz.

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Hi everyone

 

Those that have sent urine samples to Sunderland - how did you get the samples? My son is still in nappies and I'm fairly sure he wouldn't take kindly to me half dressing him, then stalking him whilst clutching a sample bottle. Maybe I'm just trying put off what will probably provoke a tantrum, not to mention the objections I'll get from my wife. Still, any tips would be useful.

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Hi Tizzmeclare/Steve -

Tizzmeclare (ushuretizzu??) :lol: - If I was you I'd space out all 3 changes, so you know definitely what's doing what. I'd do the Eye Q first, as you should see any benefits within a month or so (a month 'dosing up' - 6 caps a day and ###### expensive too! - and a couple of weeks to 'confirm' any changes). Dairy next, as this takes around 3 months to show any results, then gluten last as it's a six month minimum... After that, if it has proved helpful, I'd try 'challenging' the diets to confirm after about a year to 18 months. Challenging 'eye q' isn't really necessary, as it's not intrusive and is a 'good' intervention for anyone. Dairy will probably be self evident if my experiences are in anyway typical and there's a bowel problem in the equation... Gluten's the biggy in terms of cost (even with a good GP - thumbs up on that one!) and lifestyle restrictions, so definitely don't want to be on it if benefits are minimal/uncertain... Hope that's helpful...

Steve - First thing I'd say is if there's any way you can get littlun to accept this as a 'game' go for that approach - you never know, he could surprise you! Secondly, go for a nice BIG pint mug, rather than the tiddly specimen jar - you can decant later. Make sure it's clean, though - Guiness contains gluten!

Very best and good luck to you both... Tizzmeclare; looking back over the post I was reminded your initial enquiry weas just after diagnosis and you were a bit snowed under... hope things are getting a bit easier now.

L&P

BD

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Hi all :)

 

My Littlest One, still in process of assessment, has severe multiple food allergies to dairy and egg. He also finds food 'difficult', if you know what I mean and has only put on 1kg in the last year :( Dietician has prescribed an uber-supplement to try and help.

 

Anyway, my question to you guys who have successfully tackled the cf/gf diet is this...(Badders!!)

 

Obviously my son doesn't have any dairy, but he does have gluten. Interestingly up until the age of 18 months he had bowel problems (treated GOS) which included a wheat intolerance (not gluten per se as this was tested then)...but he 'outgrew' these problems.

 

Anyway, do you think it is worth getting the urine test gone for gluten?

Plus, have you found that doing this diet has helped overcome self-imposed food restrictions??

 

Cheers!

 

Bid :wacko:

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Hi 'Bidders' :P

With Ben's bowel problem (chronic constipation & incredible amounts of 'solid' vom!) it was removing dairy that resolved it... Did your littlun's recovery coincide with removal of dairy? If so, it might be the two were connected but you just missed it at the time 'cos it was an unknown factor you weren't looking for...

I think it's well worth getting the test done just for gluten, as this helped Ben's behaviour/self-control enormously. I know that sounds a bit daft, given that his behaviour can still be massively challenging - but you should have seen it before!!

Another thing is that if there is an intolerance it might be effecting his diet more generally - either causing him to 'focus' on foods containing gluten exclusively (if he likes the high they give him) or to avoid them (if he doesn't) when he recognises them in other stuff. Another possible side effect can be a reaction with the gut 'flora', causing bloating/discomfort which again can lead to a general reluctance to eat all but known 'safe' foods.

If I was in your shoes, Bid, I'd give it a looksee. If your GP's a good 'un and refers for the test the cost is nix, and if the test proves negative you've ruled it out as a possible factor with the other stuff.

L&P

BD :D

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Thanks Bads!

 

I'll have a think about it some more.

 

As for dairy, he has such a severe allergy that from the minute it was introduced into his weaning diet he had a bad reaction, so he has never really had dairy at all. Ditto eggs. We're talking potentially life-threatening reactions (anaphylaxis) :(

 

He outgrew his bowel probs by about 18 months. Basically he had an allergic reaction in his gut which meant all food whizzed through at top speed and came out much as it had gone in :lol: He was prescribed Sodium Chromoglycate which dampened down that allergic reaction so that food went through slowly enough to actually do him some good. Interestingly these problems disappeared at about the same time his intolerance to wheat and soya disappeared too. His intolerant reactions were severe abdo pains.

 

Who knows! He certainly would happily live on bread, pasta and cereal, which sort of echoes the idea of craving gluten?

 

He doesn't really have behavioural probs, it's more the self-restricted diet that worries me :(

 

Anyway, thanks for your advice!

 

Bidx

Edited by bid

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Hi Baddad,

 

Thanks for the advice - I've started the eyeQ today - I see what you mean about cost, it was �18 for a 180 capsules!

 

I'm going to introduce things slowly like you mentioned - its funny but my husband said today, that he thought we should try the dairy before the gluten, as he's sure thats what affecting Asa more. I think I will give the eyeQ at least six weeks, maybe even three months to see what real if any difference it makes. After all, Asa is nine now and a few more weeks of wheat and dairy can't do any more harm after so long, and I feel the summer holl's would be a great time to make dietry changes, give Asa a chance to settle before tackling a new class in september (always a difficult time).

 

Goodluck Steve with the sample hunting!

 

Thanks again for the advice Baddad, ttfn, tizz.

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Steve,

If youve not already managed to get sample you can get special bag thingy that fits inside nappies. We used this on Isaac when we did the sunderland test. We got them from health visitor and it did take a couple of goes but managed to get sample during night. Hope this helps.

lucy

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HI there

 

I read somewhere that gluten acts as a kind of "opium" to some people - the more they have the more they want. My lad was a toast and bread addict - always in the freezer and at the toaster. Since we started him on gf bread, biscuits, cakes etc this has stopped. There is still ordinary bread in the freezer but he doesn't touch it.

 

He also used to suffer from very bad breath, wind and bowel problems, and this has stopped since he started with gf foods

 

Lisa

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PS I know I'm not allowed to advertise but I have 2 sealed bottles of EyeQ capsules, and one unsealed nearly full bottle of capsules, still within expiry date (10/2006). If anyone wants em please pm me and I'll gladly send them to you.

 

We did try Chris with them but can't say we noticed any benefits, and he stopped taking them (well, he "forgot" to take them!)

 

Lisa

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Jordan has been on a dairy free diet for 9 months and I haven't noticed much difference. I've just been back to the specialist last week (a different one from 9 months ago) and I suggested the gluten free diet and he just dismissed it. He suggested changing medication from Senna and lactulose to something else, but he didn't write the prescription properly - so I've got to try to get back to the hospital. But I decided to go ahead with the gluten free diet anyway and see if it makes a difference. I think I might get him tested, then I'll know whether I'm going down the right route.

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Hello

 

I'm new here but have been doing GFCF for 3 or more years.

 

For us it makes a tremendous difference. So much so that since my son got hold of some gluten loaded custard creams two weeks ago, he has been somewhat challenging, to put it mildly.

 

It takes an awful long time for the gluten to come out of the body and my son had some withdrawal, so for three months we weren't too sure that what we were doing was right and nearly gave up. If it hadn't been for the immediate improvement in bowel movements, I'm not sure we would have persisted.

 

The successes I see in my son are:

? increased attention

? reduced aggression

? fewer bouts of sickness

? faster recovery after illness

? formed and less smelly bowel motions

? the permanent runny nose is now dry!

? weight gain

? he does not appear to be in pain. [Looking at old photos I realise he was in permanent discomfort if not pain]

? interested in his surroundings [He is an active member of our family now, not just observing from the perimeter]

? most importantly, he is happier

 

 

Oh, and we no longer get night sweats. My husband feels so great on this diet that he sticks to it all the time (coeliac in his family). We're also into Eye Q.

 

Anybody want to ask me, I'll tell you what works for us.

 

Jaded.

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Hi all,

 

just thought I would mention as mother of child who i suspect has aspergers. I have been diagnosed as having ceoliac disease (ie. intolerence to gluten) since I was little.

 

I wonder if there is any link between Ceoliacs and aspergers. Maybe this is something that needs looking into with all who have autism or aspergers!

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The Medical Research Council (boo hiss) is supposedly investigating the link between gut and the developing child, which I would assume is looking at familial traits.

 

Not sure how linking works on this forum, but here you go:

 

http://www.mrc.ac.uk/index/public-interest...search_fora.htm

 

Nice idea, but I've not seen any research that has actually been funded. The word is that they have not had any robust proposals.

 

Jaded

Edited by call me jaded

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I tried Nathan on the full gluten and dairy free diet but it made absolutely no differance whatsoever.

Nathan was born showing all the classical signs of infantile autism and hypotonic to boot. Its how he was put together and nothing other than TEACHH and cognitive behaviour approaches has helped.

Sam was an screaming 24/7 monster whose skin began to peel off. He had an allergy rather than intolerance to casein and I had to follow a glactoseamic diet for him.

Now at nearly 9 he is very intolerant of milk and dislikes it.

I wish taking him off gluten as well would slow down the hyperactivity but like his brother it made no differance.

 

Yes CF/GF is worth a try and if a child is affected by these proteins then yes taking them out of their diet makes a differance and makes life more fun.

Its not worth continuing if the diet makes not a scrap of differance for a child.

 

As my whole family is Aspie with the odd autistic thrown in to add spice I suspect in my families case we are looking at mainly a genetic reason.

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Tried both , didn't make any difference apart from he ate next to nothing and lost 1/2 a stone so scrapped the idea, works for some definately didn't work for us

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Hi guys,

 

I know its been a while since the postings about my son starting EyeQ were posted here, but I just wanted to say...

 

We or should I say he's just completed his three months of 6 capsules a day and has moved on to 2. I feel they have been very benifical. He seems calmer and has certainly been less aggressive. I know I can't possible prove that this is as a direct reslut of using EyeQ, but I don't mind, we are going to stick with them for the forceable future.

 

Today he had his first gluten-free day and he hasn't moaned once! In fact when I presented him with his own little lasanger in a seperate dish, he was thrilled...roll on the dissapearence of those horrible black rings under his eyes!

 

Any tips on how you guys have implimented the diet...do I introduce it slowly, or just go for it?

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I voted 'no' - but I did want to ask whether anyone has received help from a nutritionist or similar on the NHS?

 

I'm asking because I was at a support group meeting, where a paediatrician said that they cannot refer someone who has put their child on gf/cf (or wants to) to a nutritionist if the reason for doing so was autism.

 

She also said that this was a national policy.

 

The paediatrician did say that if the reason for the diet was coeliac disease, then they could be referred. Presumably there's lots of useful advice available to these people, but not to us.

 

I was shocked at this, and wonder what other people's experience is.

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tizzmeclare

 

Just go for it. You may get some withdrawal (about day three it can all go pear-shaped), so don't expect it all to go smoothly. Supplement with vitamins and minerals and then you won't worry about how much he eats.

 

Elanor

 

My GP was prepared to send me to a dietician, but the appointment never came through. I never chased it up because my neighbour is a nutritionist and I run things by her.

 

The Institute of Optimum Nutrition is supportive of GFCF. Their website has details of practitioners and you can be assessed in London by student practitioners (under strict supervision) for a reduced rate, if not free.

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Yes peadiatric dietician for both Sam and Nathan.

 

BUT Sam has an incrediably high Ige level in his blood that is seriously poked by nuts and milk and intolerant of eggs fish and goes like a crazy muppet on asparteme and caffine.

 

We needed advice from a dietician to run a total excluxion diet without depriving him of anything needed to be healthy. They also provided a special top up formula to make up the short falls in his diet as the toad would not eat what he could have and was living on toast at the time.

Nathan was checked out because of Sam.

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Hi call-me-jaded,

 

Have decided to just go for it! day two went ok, I took him to sainsburys and he had his pick of the "free-from" shelf, as I want to find out what little treats he likes the most.

 

The stuff is very expensive I thought, but my GP has offered to fund ( i imagine that will be part fund) the diet, with the results and recomendation from the ARU at Sunderland uni.

 

Thanks for the warning about withdrawl symptons, I'll be ready for them now!

 

Tizz

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but I did want to ask whether anyone has received help from a nutritionist or similar on the NHS? 

 

I'm asking because I was at a support group meeting, where a paediatrician said that they cannot refer someone who has put their child on gf/cf (or wants to) to a nutritionist if the reason for doing so was autism.

 

She also said that this was a national policy.

Hi Elanor,

 

This is definately rubbish. We asked for and received a referral to an excellent NHS dietician who knew all about GFCF for my ASD son. Only catch was I had come accross the dietician in question at an ASD support group meeting and knew exactly who to ask for a referral to!

 

I would recommend asking other parents in your area for recommendations of a good dietician and then asking your GP to refer to circumvent the paediatrician. Or just go ahead with the diet anyway!

 

For info on my experiences on the diet see my post on the Autism and co-morbids thread. Good luck.

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It took me ages to realises that every time someone votes on this it gets bumped up. Looking at the responses, over a third of us are doing some kind of special diet with our children or for themselves.

 

Presumably if we didn't see results we would stop.

 

How do we get them to listen to parental anecdote?

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No idea ! It's very frustrating to be dismissed by both my child's doctor and consultant. I'm sure they think I'm clinging on to a false hope of recovery when in fact I'm absolutely thrilled that my daughter's bowel problems have improved so drastically. Why would I keep her on a diet which in truth I find pretty difficult to follow - how much easier would my life be if I hadn't seen any benefits ?

 

At our last visit to consultant when I explained the benefits the diet was having she remarked that I must have been giving her too much milk before and that was causing the constipation! I just conserve my energy now to try and master some basic gf/cf cooking :blink:

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My sons last nursery school saw the transformation in my son from when he went on the diet. The head lady there attended a specialist course in Autism and mentioned this to the "professionals" and they dismissed it.

 

Most professional people I have been in contact with are very encouraging now that we are on the diet - but I am sad that they do not ever mention the possability of trying the diet to people when they first get a diagnosis ..especially when there are bowel problems etc.

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Who are the people who are doing the gluten only diet? J's Sunderland test came back quite low for casein so we've been advised to do gluten only, however I've just read Marilyn Le Breton's book and the implication is that I'd be wasting my time (and of course J's) if I don't remove casein as well. I'd like to speak with anyone who's doing GF only and find out their experience.

 

Karen

x

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