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(16 Posts)
GeorgeWinsor Wed 26-Feb-14 22:25:20

I suspect my DH, 5yo DS and 2yo DD may be Coeliac but don't know anything about the tests.

Has anyone any experience of this, I have heard about false negatives and tests which are unpleasant but guess a positive test result is needed for others to take their ill health seriously?

Bingbongbinglybunglyboo Thu 27-Feb-14 12:54:43

Hi, first stage is a blood test. Nice and easy.

I think I have this right but someone will correct me if I'm wrong...

If the blood tests show no gluten anti bodies, then the person is considered not coeliac.

If there are anti bodies, a biopsy is used to look at the damage in the intestines.

In a child, to save them the biopsy ( which would be done under sedation in an adult but a general anaesthetic in a child) they can make a diagnoses if the anti body levels are high enough, without the biopsy.

The above is my understanding of the guidlines issued. Ceoliac uk is useful, I spoke to someone on the phone About diagnosis in children and they were fab.

Bingbongbinglybunglyboo Thu 27-Feb-14 12:57:40

I think the false negatives can come from the biopsys, where they might not visibly see the damage caused, as they are looking at such a thin amount of intestine. However am guessing a specialist dr will have seen it all before and will look at symptoms, History, blood test results etc.

Goldmandra Thu 27-Feb-14 13:01:40

It is important that you do get them checked because there are risks associated with continuing to expose the gut to gluten if they do have it.

Don't remove gluten from their diet without being advised to do so by a medic because it could cause a false negative result.

bex2011 Thu 27-Feb-14 13:11:23

What bingbong says is my experience, although my niece was diagnosed on blood results and family history alone and now 6 years on the consultant wants her to be reintroduced to gluten and biopsy done (non way). Don't exclude gluten until all tests have been done.

drivenfromdistraction Thu 27-Feb-14 13:15:07

Definitely speak to Coeliac UK.

Very important not to change their diet before testing is completed, and keep them eating plenty of gluten (horrid as that feels to do).

The guidelines for diagnosis in children has recently changed (Coeliac UK can tell you about this) - if the antibody levels in the blood test are high enough then a biopsy is not necessary. I believe they will then do an HLA-typing blood test to see if the child has the coeliac 'gene' (DQ2 or DQ8) and if they do, that plus the antibody results are enough for diagnosis.

Because your DC are very young, a false negative is possible - the immune system is not fully developed so they might not be producing enough antibodies to show up on the test (but still be getting internal damage).

Make sure that you are referred to a paediatric specialist - and that the blood test is done at a hospital by someone experienced at dealing with children. At our hospital, they give the child local anaesthetic and manage the whole blood test so well that my DC actually regard it as a treat!

It's possible that they might not be able to draw enough blood from your 2yo for the test - this happened to mine.

I have a DC diagnosed coeliac age 4 (blood test and biopsy) and one who tested negative (age 3) but whom we still believe to be coeliac. Feel free to ask any questions.

Bumply Thu 27-Feb-14 13:24:17

Agree with the above
Definitely don't change diet before the tests.
And if there's someone in the close family with coeliac then the chances of having it go up from 1 in 100 to 1 in 10.
I have 12 year old who was diagnosed by biopsy just over 10 years ago. Perfectly healthy with the right diet (post diagnosis)

GeorgeWinsor Thu 27-Feb-14 20:56:13

Thanks for all the replies, very helpful.

Unfortunately I have already changed DDs diet so guess I would have to reintroduce gluten just to get a diagnosis.

I wish DH had pushed more when he had tests for crohns etc, the doctors told him there was nothing wrong and all the symptoms were just normal for him and he accepted it.

Goldmandra Fri 28-Feb-14 08:07:04

If she's been completely gluten free for a while you may find she has quite a big reaction when it's reintroduced. I think you should seek medical advice before doing anything else.

ilovepowerhoop Fri 28-Feb-14 08:16:06 - says if you have cut out gluten then you would need to reintroduce it before testing:

As a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least six weeks before testing.

For children, you can mix wheat flour into foods such as yoghurt or baked beans to add more gluten into their diet.

If you are reintroducing gluten into your diet, you should discuss how best to manage your symptoms with your GP. Your GP will be able to arrange for you to be tested for coeliac disease as soon as it is appropriate.

GeorgeWinsor Fri 28-Feb-14 23:45:41

I need to get GP appointments, as a further complication my GP have been so poor on this I am in the process of switching to a different practice...

My main concern about the future is the social, enjoyable side of eating out, take aways and being able to just buy a butty when out rather than always having to take a picnic for the family. How do you guys handle that?

Goldmandra Sat 01-Mar-14 08:34:57

My main concern about the future is the social, enjoyable side of eating out, take aways and being able to just buy a butty when out rather than always having to take a picnic for the family. How do you guys handle that?

It just becomes normal. It's my father who has coeliac diease but I suspect DD2 may have it too.

We eat gluten free meals as a family. If we eat out, he just brings his own bread. You get to know which snacks you can and can't pick up without having to trawl through lists of ingredients every time.

I know it sounds like a major hassle and that your children will miss out but TBH it really isn't that bad.

ilovepowerhoop Sat 01-Mar-14 10:01:42

quite a few place do gluten free options e.g. I know pizza hut offers gluten free pizza bases

MoreBeta Sat 01-Mar-14 10:19:47

George - I am not Coeliac but have severe Non Coeliac Gluten Intolerance and only diagnosed late in adult life. The issue with food and social life is harder for an adult in some ways but children can adapt and it just becomes a part of life.

In fact, what I would advise is that you may as a family wish to consider going gluten free in all meals. It means more cooking from scratch and eating out involves some planning but many more places now cater for gluten free diets.

For example, today in my small provincial town I am going out for a pizza and a really nice gluten free pizza at that in a small family run restaurant that caters for gluten free diets alongside 'normal' people.

Don't forget, as a coeliac your DD will still be able to eat, meat, fish, eggs, vegetables, fruit like any normal person. Ready made sauces, stock cubes, breakfast cereals, biscuits, bread and surprisingly things like oven chips and the like are the only tricky bit as they contain both obvious and hidden gluten. You can readily by gluten free cereals now so she can eat pretty much with the rest of the family the rest of the time.

The only remaining thing I would add is many coeliacs are intolerant to lactose (i.e. milk sugar) and I drink lactofree milk which is readily available for supermarkets now and tastes just like normal milk. It is normal milk just with the lactose taken out with an enzyme.

Otherwise I agree with all the above comments about testing and so on.

GeorgeWinsor Sat 01-Mar-14 23:04:23

I think if we do end up with coeliac being diagnosed I would have to make our home gluten free. It would be the only way to manage the change.

I guess the bit I dread is the first bit of testing and possibly having to make my DD ill so she can be tested.

As you all say, managing the diet would become second nature and well worth it.

drivenfromdistraction Mon 03-Mar-14 11:14:33

I sympathise with you re: the testing, if I were you, I would ask to be referred to a paediatrician or paediatric gasteroenterologist before you begin the process. You want to be sure that you don't have to do it for longer than necessary - so you want to know when the blood test / biopsy are booked in for.

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