Gluten intolerance, private testing? (sorry long!)

[runikka]

Good afternoon

Hope everyone has had a glimpse of the sunshine today?

Daniel had a paediatrician appointment today, pretty normal stuff really but we got his blood tests back for his chromosome, blood count, coeliac and lactose test. All came back as normal which I know is a good thing However, the paed said we can drop the issue over gluten free diet as Daniel shouldn't be affected. However, my understanding is that there is a difference to coeliac (sp?) and being allergic or slightly intolerant to gluten. I thought that coeliac was where the sufferer couldn't tolerate gluten at all to the point that the foods were not absorbed into the blood causing side effects such as iron defiency, weight loss, lethargy.
The reason we managed to get Daniel tested at all was due to my father in law being a coeliac sufferer.

I just wonder if any one knows whether the fact that coeliac has been ruled out means we can be sure that gluten is OK or should we go for a private test to check all food allergies/intolerances. We did originally set out to do this but cannot find anyone that will do the blood test without a GP referral. Our local practice said the paed needs to authorise and she WONT because she arranged above blood tests and thinks we should let the matter drop.

Any advice much appreciated.

Best Regards
Kirsty

[Isababel]

Ooops! I have just seen the link, will start with that. Thanks

[Isababel]

Gess, I have been thinking of asking you so many things about leaky gut in the last months. It seems to me that a leaky gut may be the origin of DS' multiple food allergies, but I'm not quite sure how to go about arranging for testing or what should I do or avoiding to help him.

Could you recommend a goos starting resource on the subject? I have looked for leaky gut & allergies in PubMed but only have access to the abstracts.

[Isababel]

I confess not to know much about the subject but DS' coeliac test came as negative, but he is allergic to glutten, and although recent test showed milk as a negative... he definitively reacts to it.

If you decide to test for food allergies and intolerances, what test do you plan to use?

[gess]

yep- more likely to be gluten problems because of leaky gut. more info here

Your paed obviously doesn't know much about this (usually they don't!)

[runikka]

Hi Gess

The paed has diagnosed him as med-high functioning on the autistic spectrum. He has a social communication disorder primarily diagnosed due to lack of speech/pointing/understanding.

Kind Regards
Kirsty

[gess]

What's Daniel's diagnosis?

DS1's issue with gluten is that his gut is leaky, so larger molecules than usual pass through - incomplete breakdown of gluten produces molecules that have an opiate like effect. That doesn't show on a coeliac test. We had his urine tested at the autism research unit in Sunderland.