coeliacs - how much gluten needed for test?

[pigsinmud]

I've had loads of help from you all in the past! My ds2 has been wheat free for 3.5 years on the advice of the GP. We tried him back on wheat about a year ago and did a home coeliac test - positive line slightly appeared at the cut off time, so weren't sure about result. It was obvious to us that wheat causes problems, so just took him off again. We're suspicious of wheat as dh's sister is wheat free and also dh suffers slightly if he eats too much wheat.

Trying again and going to GPs next week. He has been eating wheat for 10 days and now is back to liquid poos and tummy aches. We're hoping GP will do the blood test - how much wheat does he need to be eating a day - 2 slices of bread or more? He was so keen to eat wheat and now wants to stop! He had a wheat free breakfast so at least school should be ok. Is it 6 weeks he needs to eat wheat for to be able to show up on the test?

He was fine for a week, but now it's all happening.

schilke - I agree a firm diagnosis will sort things out for life - prescriptions (and in some areas monitoring). If he becomes very ill on the gluten diet (after the six week point but before the three month point) then it is worth asking for an immediate blood test and an urgent appointment for the biopsy. Some doctors/paeds will do this if the child is becoming overly ill and needs to come off the gluten - but the results may, of course, be affected by not having been on gluten for the recommended time. Keep a record of his weight as you go along. Some doctors will, if a child becomes ill on the challenge, is tested early and has a negative result be willing to "treat as coeliac" - but that decision would be merely for that doctor and a different doctor in the future could decide not to prescribe. Of course getting prescriptions is now less important than previously because there is so much glutenfree food in the shops. The fact that it's taken a week for symptoms doesn't make it either more or less likely that he is coeliac. Some people react immediately, with others it takes longer and some don't react at all - and it's particulary difficult to judge with children. You could cut down the amount of wheat he has but up his barley, rye, etc. - some coeliacs are wheat intolerant as well as suffering the damage from the gluten. You would have to ask someone about the relative amount of gluten in rye vs. wheat if you were going to go this route to ensure he had enough.

Have been out for the day, so only just coming back to this, but just wanted to add that I agree with everyone that an official diagnosis is very important. Coeliac disease is relatively easy to treat - DD1's gluten-free diet has been far easier to follow than I originally feared as there is now so much available in the shops - and her visible symptoms cleared up within a couple of weeks of starting the diet. Also, her consultant told me, and I have since heard from coeliac uk, that it is only a matter of time before there is a drug to treat it and following a gluten-free diet may not be necessary.

The symptoms you describe sound exactly like DD1's prior to her diagnosis - she was only 2.8 at the time of diagnosis but at that point had not gained weight for a year. Since then (about 18 months) she has gained 5kg (she weighed 10kg when diagnosed) and has grown 15cm. She is a completely different child.

Best of luck with your GP next week.

DS has problems with wheat (unsure at moment with intolerance or allergy), we were eventually (long story!) referred to paed and dietician, and it was suggested we tested him with gluten food that didn't have wheat in (he'd been tested for cd and it was negative) we found rye cookies that didn't have wheat but did have gluten - turned out he was fine with gluten but cannot tolerate wheat at all.

Have a look in your local health shop they should be able to advise you. Good luck!

Wangle99, gluten varies between different cereals. You might have a reaction to wheat gluten, but no reaction to rye gluten - and still have coeliac disease. I am one of those people with CD but without any obvious symptoms; I would be worried that rye (and barley) is causing unknown damage.

Untreated CD can also make you intolerant to lactose - when the stomach lining is affected, it can become irritated by lactose. When gluten is removed from the diet and the stomach starts to recover, you can take milk products again.

Sciolist - Can I assure you I was not suggesting that schilke use rye and barley after diagnosis. As you say no diagnosed coeliac should ingest rye or barley. However, if avoiding wheat but ingesting rye and barley eased the pre-diagnosis symptoms - i.e. reduce the tummy pains etc. but still allowed the damage to happen so that a valid biopsy could be done, it might reduce the trauma of eating gluten for the challenge.

Wow sciolist I stand corrected! The information I got was from the hospital dietician (say no more lol).

Apologies for incorrect info.

Just seen GP. He is going to refer ds2 to a paediatrician to be tested. He did say that ds2 didn't look as wasted as most coeliac children I was about to point out that he's been pretty much wheat free for past 3 years, but couldn't be bothered! So we'll wait and see.

Ds2 is off school today - had an awful migrainey type headache yesterday. He'd been feeling weird at school and went to bed when he got home. He had awful stomach ache and looked so pale. Feels better today, but decided to give him the day off as looks washed out .... suffering with mouth ulcers too poor thing.

Schilke - I am a coeliac and I get mouth ulcers too. In my case it is called lichen planus, and the consultant dermatologist says there is a link with CD.

The other symptoms you describe could all be CD - sounds very similar to my DS.