Professionals view of GF/CF Diet

[sophiemel]

Hello! This is my first post here. I have twin boys aged 25 months who have no diagnosis yet but we feel they are definately on the autistic spectrum. We are seeing the paediatrician in September and have been thinking about trying the GF/CF diet. I just wondered what peoples experiences were with how professionals are viewing it these days. I think I am paranoid that I am going to be classed as a nutty mum looking for a "cure" which is certainly not the case. I just think if there is something that might help them then I am willing to try it. One of the reasons for this question is also that both my husband and I worked with autistic children for many years (but not in the last 5) and neither of us were aware of the benefits if this diet!!!

 

Sophie

[bid]

We haven't tried the diet, but when my son had his full assessment from the EP on Monday she came armed with loads of literature about the diet plus various supplements.

 

Bid

 

I meant she had info about supplements, not the actual supplements!

Edited July 25, 2004 by bid

[mbrown]

Hello Sophie, I have a 10 year old boy with Asperger's syndrome and we have been trying a GF only diet for a few months. I will make no bones about it , a diet like this is hard to enforce and enforce isn't too strong a word. It is hard.

 

Personally, I found a difference in my boy very quickly. He became more talkative and it is sometimes difficult to get him to stop!!

 

For the first part of this year, his teacher said that he had improved in class, which was good buit since then his behaviour deteriorated so the GF diet is not a 'cure all'

 

If you can stick to it(100%) give it a go. There are no ill side effects from using such a diet.

 

After 4 or 5 months I am still determining if the diet is actually of benefit.

We started the diet by ourselves because it is very difficult to get a doctor to prescribe such a diet. Recently we have found out that our GP will indeed fund or prescribe a GF diet for 3 months as a trial to see if there are any 'continued' benefits to be had from following it.

 

Good luck

mike

[baddad]

Hi Sophie-

 

Reactions from professionals vary; some seem to feel it's worth a go, while others view those who promote the diet as modern day "snake oil peddlars". At the end of the day, the only person who can make a decision is the person who has to provide and maintain the diet (i.e. you!). Given that the diet is quite troublesome at first, I find the suggestion that parents might see benefits just because they want to to be a bit lame.

 

A few bits of advice:

 

*If you are going to do it, do it in two stages: dairy first, then gluten 6 months later. Reasons are twofold; 1) If you knock both out at once you won't know whether one or both are having the (percieved) effect. 2) Dairy gets out of the system quicker.

*Are there indications that there might be intolerances? Bowel disorders/vomiting? resricted diet focussing on OR off of the highlighted food groups?

*Get urine samples off to Paul Shattock's team at Sunderland - Costs around �30.00 (last time i looked) or can be free if your GP is open minded enough to make the referal.

 

From my own POV i can say that the diets have helped my son, but that his intolerance has not proved as "intolerant"?? as some reports I've read; i.e. he can cope with small amounts, so long as exposure is not prolonged. I'm not saying those reporting more extreme reactions are wrong, just reporting this is not the case with my son.

 

Good luck, whatever you decide, and given your boys ages, lets hope it's a non-starter.

[sophiemel]

Thank you for your replies. James and Charlie do eat a diet that is extremely restricted to the said foods. They have suffered bowel problems at times, e.g. going through phases of going 3-4 times a day each for several weeks and always have runny nappies. (Apologies for the detail!) James also suffers quite badly with eczema.

 

Whatever our paediatricians view is, I think that we will end up trying them on the diet because I just feel otherwise I will always be wondering if it might benefit them.

 

Sophie x

[Lisajb]

Hi Sophie

We do the diet with our son in a small way, I don't think I could cope with the full blown thing and Chris would probably rebel, however,

 

When he eats gluten containing foods his breath smells appalling (dragon breath indeed) he smells generally, and was forever running to the loo and sometimes not quite making it. He is also pretty bad tempered when he eats gluten containing foods.

 

Removing gluten also removes all of these umpleasant things and that was confirmation for me that I was doing the right thing.

 

In response to Mike - lucky you! Our gp and paed refused on the grounds that "only coeliacs are entitled to gf foods on the NHS"

 

Best wishes

Lisa

Edited July 25, 2004 by Lisajb

[gail]

I've heard that enzyme supplements can sometimes make the GFCF diet unnecessary. Has anyone tried them? Do they help adults?