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Deborah 1

has anyone else been told this

9 posts in this topic

I have been waiting months now to see a dietician about Luke?s problems with certain foods and intolerance to mono sodium glutamate. I have been told it could be another four months before he get to see someone due to a long waiting list.

He has been suffering terrible bouts of diahorria and constipation really bad colic in his stomach also some days he?s stomach has been so bloated it looks like it will burst at any time.

He?s also been referred to a paediatrician and again been told it could be months before he can get an appointment.

In total frustration at seeing him suffering like this I have been alimenting and reintroducing foods into his diet for a while now.

Speaking to the doctor I told her I was going to pay for a urine test to find out if he was gluten intolerant imagine my horror on being told that a paediatrician will no longer take into account tests you have paid for yourself as they have not always found to be accurate

I have started Luke on a gluten free diet and I have to say the difference in his bowl movements his temper and his whole being is unbelievable. He is not crying holding his tummy in fact I would say he seems so much happier.

So much for Tony Blair?s health policies we now wait longer for appointments

If we pay for test to be done we no longer know if they will be accepted by the paediatrician and we wait months for them to make a decision and pay a fortune on food to keep our kids well why they make up their minds as to what to do

I am totally fed up being told to wait and given excuses

Has anyone been given this information by their GP

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I think it is very frightening that this is going on, Ihad a dx of asd privately because at the time i could not find anyone on nhs to carry out assessment on nhs, and was told they would not accept it, i was so ill with depression and anxiety but lack of emotional expression and difficulties in explaing how i felt meant that wasn't dx either, I suppose it is all about money and I believe it is a post code lottery about whether you live in an area where someone has understanding of it.

 

I have started following very rigid diet and have recently got massive improvements in depression and anxiety but still have conceptualising and information processing difficulties that are the core problem of asd but that would ridiculed by the medical profession.

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It doesn't surprise me.

 

What you could do is find out what tests the dietician uses and get them done. Ironically if you talk to Paul Shattock or anyone at the ARU in Sunderland University they will tell you the dietician's tests are not accurate enough.

 

I went ahead and did the diet without support. Very few of the products that are available on prescription are actually suitable for the extreme intolerance that people with autism have - they're OK for coeliacs who can tolerate tiny amounts of gluten. My son can tolerate none.

 

I've never had any difficulty with school, etc accepting GFCF and send in his lunch every day for them to reheat (GF sandwiches are vile). He's never ill now so our need to see the paed has disappeared.

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Hi,

 

Luke sounds just like my son (3 years) - he had suffered from terrible stomach distension and loose stools etc until we put him on the gluten and casein free diet (we followed the AiA diet) It has now all cleared up!!! We also give him Acidophilus supplement (is available at the more hard-core health

food stores) and that seems to be really beneficial!! Since implementing these changes he is talking loads more and has improved beyond measure

 

Hope you have the same results

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i cant believe the difference in him already

moods concentration. he seems so much happier

mind you so am i as this is the first night i manage to produced a gluten free loaf out the breadmaker that looks like a loaf and taste like one lol

 

 

 

deborah

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Hi,

 

I agree florrie that its a post code lottery, we moved and have found that the services we get are so different to our previous add (30miles difference). We waited months for app's , even to see the gp was a nightmare In our current add things are so quicker....

 

I also went the private route when getting a dx we had our son seen by the dyslexic ass (to try and hurry up a dx) that cost us ?350 for nothing because they did not pick anything up.. Not sure about dr's not accepting private dx's got no experience with regards to that sorry.

 

I have tried the gluten free diet and things did improve. I gave up in the end but keep it up if you can. I read somewhere that gluten is like a drug for AS/ASD children and that its kinda like going through major cold turkey and some kids have resorted to extreme measures to get gluten, eg eating the glue from the carpet that contains gluten you will be amazed what contains gluten..

 

justamom

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We paid for the urine test for my son (now 3), when my doctor received the info she asked if I expected her to keep it all as there seemed no point in making his file so big!

My doctor is very funny with us, sometimes she is nice to the point of helpful, other times i may as well talk to the receptionist!

 

As for the diet have you seen the Marylin Le Breton book? Its a great source of info and recipies, I brought mine from Amazon online.

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Sounds promising Deborah. My sister is Gluten intolerant and it made a huge difference for her coming off it - before that she was in and out of hospital with all manner of illnesses.

 

It was my mum who suggested she might be having Gluten problems - she looks so much better now

 

Hope everything works out OK, may be worth taking your evidence to the GP if it's working.

 

Daisy

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mind you so am i as this is the first night i manage to produced a gluten free loaf out the breadmaker that looks like a loaf and taste like one lol

 

I never managed one of those! When EnerG loaves came down in price (they used to be nearly ?5 each!) I gave up trying.

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