Ds has to to back onto gluten to be tested - any advice?

[moosemama]

Hi

We were advised to try removing gluten from ds1's diet a few months ago due to ongoing digestive, health and growth issues.

He has been gf for four months now and has being doing great. After an initial worsening of symptoms (withdrawal?) his digestive system seemed to settle down and barring one or two occasions where he has accidentally eaten some gluten, he has been a much happier, healthier and calmer little boy.

The diet seems also to have had a positive effect on his asd, made all the more obvious by some of his asd issues worsening coincidentally with 3 accidental incidents of him eating gluten in a two week period.

He saw a Paediatrician in January and he said that based on how much he has improved without the gluten he would think a diagnosis of coeliacs is highly probable. He has an appointment on 6 July for the blood test and to see the Paed again and we were told he has to be back on gluten for at least 3 months prior to the blood test or it is likely to come back negative even if he does have coeliacs.

So, we have decided to start reintroducing gluten from this week, but are really worried about the best way to do it and haven't been given any advice at all. We have been dreading doing it and feel terrible that we are essentially going to have to make him ill to get a diagnosis and the support that we need for him. We are also dreading what seems to be the inevitable exacerbation of his asd symptoms to the extent that we had even considered not having him formally tested and just keeping him gf based on his improvement over the last four months alone. We are worried about him getting the right nutritional balance though, particularly as he is vegetarian and feel we will need professional help to get this right.

He on the other hand is looking forward to being able to have 'normal' food at his birthday party next month.

So, so far we have just added a couple of pieces of normal pasta to his gf pasta and put normal vinegar on his chips.

Are we doing the right thing reintroducing it so gradually or should we be increasing the amount he has faster than that?

Also, how much should we increase his gluten intake to? Should we just gradually return to his 'old/normal' diet or can we keep the amount of gluten reduced to some extent?

Any advice would be really appreciated. TIA.

This was a while ago but when we had to include gluten for the coeliac blood test the amount was (imo) ridiculously high. My dd was 1 at the time and did not eat the amount we were talking about in a day let alone the foods they were telling me. The Dr and Dietician said they recommend a powder to be added to cereal to get the correct amount into them as the test can give a false negative if the child has not been having enough. My dd did not tolerate this at all was vomitting severely after a few days so I did abandon the test.

Sorry I can not remember enough to be specific but I would phone the dr at your hosp clinic who ordered the test and ask for them to get a dietician to call you.

Thank you tooloudhere. Your poor dd. It seems crazy that they have to have such high levels of the very substance that makes them ill in the first place in order to diagnose the allergy/illness.

I heard somewhere they had to be eating the equivalent of 4 slices of wholemeal bread a day for the blood test. Ds is nearly 8 and does have a packed lunch at school so that would be two slices straight away for him and I was thinking that if he had pasta or pastry or something for his evening meals as well that would be enough. Maybe not though if the levels are so high that your dd had to be supplemented to reach them.

I might give the paediatrician a call though as you suggested (don't know why I hadn't thought of doing that myself ). Its so upsetting to thing that we are going to be the ones making him ill and like yourself, I don't think I could watch him suffer for the sake of a test when its obvious that he has a problem with gluten if he reacts to it that badly.

Feels a bit like we are damned if we don't and damned if we do here.

It is a horrible situation where you have to make them ill to prove they are ill. Plus it goes against all your instincts when you have got used to becoming careful about checking everything.

I seem to remember being told a similar amount for a one year old hence them recommending the gluten powder.

It would be easier to get the amounts to an older child, however it is such a shame that you will have to deal with the probable step back on the progress with your sons behaviour. My eldest dd who is 9 is lactose intolerant ( as am I and two of the other children, yes mealtimes are interesting here!) and she suffers from aggression, low moods and lethargy as well as the other symptoms when has lactose, the difference is amazing so I can sympathise with you.

However with an 'official' diagnosis you will get more help, find the prescriptions for food more forthcoming as well as the medical support for the future, don't let me put you off as we stopped the test but my dd has lots of other unrelated health problems which influenced our decision.

Anyhow enough waffle from me and I hope that you get the info you need and I wish you all the best

Thank you for your help. Its nice to know we aren't alone in feeling this way.

Ds hasn't had anymore gluten today, as he was sent home from school poorly yesterday and the GP has diagnosed Scarlet Fever, so I felt he was already feeling bad enough without us feeding him more 'poison'.

The frustrating thing is, he's been really strange today, very distant and non-responsive and I don't know whether its down to the reintroduction of gluten or his illness.

I guess we just have to keep plodding on, filling in the food diary and keep everything crossed that he can get though this without being too adversely affected.

Thanks again for your replies, they were very much appreciated.