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.

According to coeliac UK, in order to get a meaningful test result, you should eat the equivalent of 4 slices of bread a day for 6 weeks prior to testing. It's horrible to have to feed your child food that you know is causing them discomfort and pain though so hopefully if your GP does the test next week then it might be ok. The only problem will be that your DS will almost certainly be referred to a paed gastro for a biopsy to confirm the diagnosis - blood tests do give false positives.

Has your DS been completely gluten free for the last 3.5 years or just wheat free? Coeliacs cannot tolerate the gluten in rye, barley or oats either so if he has been eating alternative forms of gluten and not suffering then he is perhaps allergic to just wheat.

You are right that it used to be recommended that six weeks was enough for an accurate blood test/follow up biopsy if needed. However, recently the recommendation changed to three months - which is a long time for little ones showing symptoms. There is no recommendation for how much wheat for little ones but adults are supposed to eat four slices of bread (or equivalent in croissants/pasta).

He has been gluten free really. However, he has been eating oats. We took him off oats last summer for about 6 weeks and then re-introduced them and it didn't make any difference, so it might just be wheat. We just wanted to find out as we have been wondering for a while. He hasn't eaten rye or barley.
I had better up his wheat intake. He had a binge for a few days. Thanks for your advice.

Oh poo 3 months! x-post flamingtoaster. This is when I think is it worth it? It might be negative, we know wheat upsets him so perhaps we should just take him off wheat and go with that. What would you do?

A v. difficult decision. Not all coeliacs react to oats, but they can generally only take uncontaminated oats, not everyday stuff. The thing is if he is coeliac then he should be under a paed to monitor his progress - there are side-effects of coeliac disease being undiagnosed. You also get some of the dry food on prescription which is handy, given how expensive it is.

How old is he?

Just a thought - do you have an understanding GP? If so, based on the faint result on your home test, maybe he would refer you straight to the paed gastro, so that you didn't have to do the 3 months (thanks for correcting me on that flamingtoaster - DD1 was diagnosed nearly 2 years ago so I hadn't realised it had changed) for the blood test and then keep on gluten while you wait for the biopsy as well.

I would question the benefit of a clinical diagnosis if you have to make your child ill to attain it. Are there other symptoms that you need to be aware of with the condition? Can you just not look out for these? Unless there is a direct benefit of a diagnosis I would trust my eyes and instincts.

Rebelmum, to stick strictly to a gluten free diet is really restrictive and so giving someone a lifetime of that if it's not necessary makes the diagnosis worthwhile IMO. Also, without a diagnosis it would be difficult to persuade doctors to monitor for related conditions (including scans for osteoporosis).

I agree with tkband3. I'd go back to GP and ask for a referral on the basis of the home test (they are supposed to be just as reliable as the test the GP will do). I might even be tempted to try another one even although your DS hasn't been back on gluten for very long. When DDs had GP tests it took weeks for the results to come back too because they send them to a different lab from the routine blood tests.

I'm both gluten and dairy free, it's very easy to monitor your own reactions. It's if there are related conditions that is the key question here imho.

Yes, there are related conditions. Are you GF and dairy free because you have CD?
When you say easy to monitor your own reactions do you mean if you accidentally eat something with gluten?

Yes you can get an instant reaction, I have been regularly poisoned by friends.. I have never been tested but am sure I'm not CD, as I can tolerate some things in moderation, like oats and rye. If there are complications with CD then it's worth doing the test.

Hhmmm - he is 7.5 by the way. Our GP is lovely - has a tendency not to listen carefully, but that's quite common probably! He suggested leaving out wheat when ds2 was 4 - GP's wife is wheat free, so quite open to that sort of idea. We hardly ever go to GP so I think he'd listen. I had heard that the home test were quite reliable, but the positive line appeared at the last second and was very very faint - I said to dh that I'd had pregnancy tests that faint before and they turned out to be right
ccbb - do you mean try another home test? Ds2 is terrified I'm going to do that!
rebelmum - that's sort of how I feel, but we've been wondering for a while. The thing is the first few days he had wheat he seemed ok. Then the tummy aches started and then the wind/poo. if he had cd would it be an instant reaction - it probably just varies doesn't it?!

The thing is with coeliac disease the effects are long term. As you probably know the disease causes the lining of the gut to be destroyed, so it is not just the next day you are affected (and not everyone would notice an immediate reaction) but months down the line.
My DS (aged 8) has just been dx (I already have an older DS with it) and I asked how long it takes the gut to recover once you on on the correct diet. The dietician told me it can take up to a year to completely recover! Having said that, I think most people start to show some improvement very quickly.

Schilke,

I must say that I'm struggling with this one as well: what do you hope to gain from the diagnosis, either way?

My DS2 - now 5 - suffers the same problem, though he is also bad with oats, and we just took him off it. We had some tests done - which came back negative - but our GP completely agreed with our line that if all the symptoms have gone and he is starting to gain weight again, it's a no-brainer.

And don't fret about being gluten free - there are some adjustments to make and you might need a bit of support in the first instance, but they aren't actually that hard. Contact me if you want to chat.

You should contact the CD society for advice and go back to your doctor, it sounds like it's a possibility and it's better to know for sure now rather than risk potential long term damage.

I know some coeliacs with a biopsy proven diagnosis who have no symptoms at all - apart from it destroying their intestines. Personally, I get joint swelling and stiffness within a few hours, and them tummy problems the next day.
Also, cutting out a major food group is not something to be done lightly in a child, so really Schilkes GP was wrong to advise cutting out wheat without doing the tests first. A proper diagnosis is also important in getting gf school meals etc.
Joint pain was my main presenting symptom and that took about 4 weeks to really improve, although it was very noticable after 2. It took over a year for things to fully clear up though.

I would personally want an official diagnosis. This is something they are going to have to cope with for the rest of their lives, not just as children. It is a very restrictive diet and causes a lot of problems when you eat out for instance. At least if they know they are coeliac they will be aware how important it is to stick to th diet when they are in their teens and as adults. It is a serious disease which leads to anaemia, loss of bone density, more likelihood of developing certain cancers, associated skin conditions. As I said, I personally feel a correct dx is essential.

Schilke, I'm a bit that your GP told you just to cut out wheat from your DSs diet. That doesn't fill me with much confidence in him. And his wife is wheat free too , so is she an undiagnosed coeliac too?

Ask coeliac UK for some advice before going to see him again.

I agree with those who have said an official diagnosis is needed. The diet, is very restrictive and to have to live with that if it is unecessary seems just a tad cruel (and without a diagnosis he will probably ditch it when he is a teenager, which might cause long term problems)

Fwiw, I think that the home test you did is probably a positive one even though the line was very faint. I'm sure I'm not the only one who repeated my pregnancy test because the line just wasn't dark enough

Just to add>: even if he doesn't have CD, would still need to avoid wheat, if there is a bad reaction. You can be intolerant or allergic and not have CD which will be why the GP suggested to cut it out. If it wasn't wheat then it could be a medical reason and it needed to be ruled out. I don't think it was such a bad thing to do, just not helpful in terms of getting to the bottom of a CD diagnosis which looks like it would be a sensible option.

But surely rebelmum, if a child is ahowing a reaction to wheat, and cutting it out invalidates any test that can be done for one of the primary reasons for such a reaction, it is a pretty silly thing to advise someone to do?

Oh gawd. Originally gp suggested dairy or wheat as a possible problem. He said to cut out one for a month and then go back - chose wheat and made a big difference. However when I went back he never gave me any advice on how to do it! We are all veggie and ds2 is a darn fussy eater so at times it is a struggle.

The teenager thing bothers me - it's easy now he thinks I can't have wheat and doesn't, but I am concerned if it is cd and we don't have a diagnosis that he'll drop it when he's older. He had other symptoms when he was 4 - very lethargic, headaches as well as very skinny arms, legs, huge tummy and no bottom. He is still skinny, but tummy has gone down, has loads of energy and headaches have gone.
I think I'll push for tests - dh is going to come with me as I'm not the most vocal at the docs!

Thanks for your help.

It's the easiest way to establish that it is wheat in the first place though. Once that's established then the test can be done, I would have thought. It's a process of elimination initially to identify the problem. If you bat on for 3 months and do the test you could find out that it's a LI not GI and the test is futile. Just thinking logically ..

I definitely would push for tests. As you say, he would be unlikely to stick to a diet when he is older just because you say wheat might make him poorly. My oldest DS was not diagnosed until he was in his twenties. He was always a skinny child, but the GPs used to fob me off saying he was just one of those skinny kids! He had intermittent anaemia, tiredness and lethargy but none of the obvious bowel symptoms; unfortunately by the time he was dx his bone density had suffered. He has put on over two stone since his dx a couple of years ago-and is still slim!.

Sorry rebelmum, but since cutting out gluten invalidates the test (and it takes months of being back on a diet with gluten to make the test viable,) I do not agree. Far more sensible to do the test in the first place imo.

hmm yes I guess your right, they could have tested immediately. GP's I don't think are that up to date always, CD is more common than it used to be. I'm just guessing that they would have a process. I got no where with my GP and just went to allergy Uk and paid privately to see a specialist.