Coeliac test negative, not sure what plan of action to take

[wangle99]

DS test came back negative last week, this is the 2nd one that has done (one last year also).

The dr I spoke to at my surgery basically said that he was unlikely to be affected by wheat/gluten if this test negative sigh I KNOW he is, the paediatrician and dietician also agree he is but it is obviously not coeliac.

Even DH is now saying 'oh well lets leave him on wheat/gluten' DS has foul wind, tummy ache, diarrhea, bad behaviour etc. I'm wondering whether I'm imagining it all.

The dr was saying what a big thing it is removing something so important from a childs diet. He made me feel neurotic for doing it This isn't something we have taken lightly believe me.

Not really sure what to do now, DS is seeing dietician at end of Feb and paed in April. The school prefer him on wheat as it means they don't have to take precautions regarding him with cooking and dinners etc.

Any advice, thoughts gratefully received.

Thank you.

Sorry to hear about the negative diagnosis, it can make life a lot simpler. I think I've mentioned before, my dh is definitely wheat intolerant and has never tested positive for coeliacs. Ds can tolerate wheat better but we still ration it.

If your ds is better without wheat in his diet, I would take it out. Your GP is talking bollocks in any case, there are lots of parts of the world where they don't eat anywhere near as much wheat as we do.

Sod whether it makes life easy for the school, if he was coeliac they'd have to cope after all!

I think your GP needs a life lesson in what it's like having to care for someone with a wheat intolerance. No-one would do it if the thing wasn't real as it is a monumental pain in the arse having to read labels, buy expensive wheat-free stuff, difficult to eat out, etc. etc. etc.

I got tested negative for coeliacs but I am definately allergic to wheat. About 10 mins after eating I seriously look 7/8 months pregnant. It really hurts, I feel sick and I have ME which I am sure is directly related.
Even if I have a tiny bit by mistake I feel ill.

I was told a sure way to know is to not let them have even amorsel of wheat for 7 days, then give them a small bit and watch for any reactions, (unless you consider it to be a anaphylatic type then obviously don't!). Maybe that will help convince your DH.

What was the test? You can have a blood test as neg, and still be a coeliac (ring the coeliac helpline for more comprehensive advice than mine!)

The school should just adhere to it, if it were any other allergy they would surely.
I would ask to speak to the head if there is a problem. ANd be a bit definate ie - He is allergic not we think he might be. My friends little lad has severe eczema and behaviour probs directly related to wheat and his school is great about it.

hope he is doing ok, how old is he?

There is actually such a thing as Non Coeliac Gluten Intolerance which doctors are finally starting to recognise.

As I see it, if avoiding certain foods make me feel a whole lot better then I don't need a doctor's diagnosis to do it.

If I were in your position I would be feeding my son a gluten free diet regardless of the test results.

Thank you for your answers. I have always trusted my judgement but this GP is one I like and normally respect so felt perhaps I was imagining it but I know I am NOT.

DS is now 5, he had been wheat/gluten free for a year (had been back on it for 8 weeks before the test eating at least 4 portions a day). Even his school commented how his behaviour had changed and he had no concentration once back on wheat.

And no, believe me I would not do this for 'fun'!!

If he has none for a week and then eats a few biscuits or a slice of bread he gets tummy ache and diarrhoea, been there done that lol

I think I'll remove it from his diet and see how it goes.

Thank you.

You can get a negative blood test but still be coeliac if you are IgA deficient. If you are IgA deficient the test will always be negative. This is explained here: coeliac.info/suppboard/viewtopic.php?t=796&highlight=blood+test

It might be worth asking the paed if the test to see if your DS was IgA deficient was done at the same time as the coeliac blood test.

Personally I would just adopt the glutenfree diet. However, the paed may be willing to "treat as coeliac" on the basis of symptoms/resolution of symptoms on the gf diet even in the face of a negative blood test since your DS was gf for a year and thinking now is moving towards needing a three month challenge for a reliable blood test and biopsy result.

I asked for the IgA test and they refused to do it.

In that case I would definitely mention it to the paed - it really does sound as if you have a false negative and it may increase the chances of the paed diagnosing on the basis of symptoms since they are so bad and improve so much on the gf diet.

Excuse me for interrupting the thread.

My ds (3.5) recentl tested negative for CD. Although he has had diarhea for 9 or so months now. The docs are currently investigating a possible acid reflux condition picked up during his endoscopy, I am sure this has nothing to do with his bowels, and am sure it is linked to his diet. Against advice we have just started a gluten free diet, to see if it makes any difference. He has grown 0.5cm in a year, and below 9th %ile for weight. Feeling nervous about gluten free as it is usually such a large part of his diet.

I know three people who don't have coeliac disease, but who are seriously affected by gluten. I also know the parent of a child who (in parents words) goes nuts on gluten - if he gets the tiniest amount his behaviour is very seriously affected as well as his bowels. He has had blinded testing and shown the same result

DD2 (10) is coeliac negative. blood tests showed borderline Iga deficiency. endoscopy and biopsy normal. took her off wheat as a last resort and hey presto - amazing change. behaviour much improved - although still can be a madam. tummy aches no more. still feels nauseous but am not sure how much of that is habit.
I know wheat is the problem. was a bit lax over christmas and within a few hours she was doubled up with cramps and foul tempered again.
it is tough. and exopensive. DD gets very sad that she can't have nice bread and crackers. she only eats bread or crackers and the GF ones aren't very nice. even she can feel a difference though.
have told school not to give her anything with wheat in - she takes a packed lunch so not much of a problem. but is going on a weeks long trip soon which will be interesting. may send her with a suitcase full of GF muffins and crackers just in case.
You are not any more paranoid than i am. although plenty of drs over the last few years have thought that i am.
if your DS is noticably healthier and happier when wheat free then keep him off it.

sorry that was long.

Thank you, all of you have reiterated that it is MY choice and no matter if GP thinks am neurotic its not up to them.

Will chat to DS about it, he knows he was coming off wheat soon and will take him back off. I can't wait as he's been a little bugger since he has been back on it!

wangle - it's quite clear that all you want is what is best for your ds. He will be happier off wheat, so will you, so it's a no brainer and sod the GP. Even the school favour the idea really! I know people can be faddy about food but what a shame that a simple intolerance can't be treated as such. No-one's saying he's going to die if he eats wheat, but SURELY it should be easier to live wheat-free than it is.

OP - how old is your DC? The coeliac screen blood test is known to be unreliable in under fives - we had to google this and print off to show GP, so DS now being restested for anaemia every 6 months just to be on safe side

It is possible to test negative and still be proved coeliac by biopsy too, and vice versa

Wangle99 - I feel for you. I'm in a quandry as ds2 was tested for coeliac last year and it was negative. Previous to this he had been off wheat for 2.5 years - therefore his weight was ok when weighed at hospital and had been on wheat for about 3 months before the test. Big reaction when he went back on wheat, but then settled down.

He continued on wheat and is still having it now. His over fussing eating has returned - craving bread products - along with bloated tummy, aches, constipation, and has had so many headaches, high temperatures, colds & coughs in the past year. He is off school again with headache and high temperature. My other 3 haven't had this many illnesses.

I'm wondering whether to take him off wheat again to see what happens. GP was quite happy with him off wheat and dr at hospital said it could be wheat intolerance - we had to work that one out for ourselves!

What happened with dietician?

Quote from a post some time ago "university of sunderland can test for gluten intolerance. it costs £60. All you do is fill in a questionnaire, then they send you a sample tube, you fill it with your childs wee and freeze it, then send it back."

The test was devised for autistic children but I think they may now test other children, especially if you say there are behavioural problems.

Please don't tell the school you child is "allergic" to wheat, though, it just undermines what you are saying. He may be intolerant of wheat but he isn't allergic to it.

You also ought to read about digestive enzymes like peptizyde. These might allow your child to eat wheat, at least at school, without suffering too much.

Dietician was fantastic, really felt was a positive appointment, she is insisting it may still be coeliac because of the response to gluten and wheat (we know its def gluten now as well) and she is going to meet with the paediatrician with me in June to speak about a plan of action.

Since being solely wheat and gluten free DS has grown 4 cm in 6 months in height!!!! Apparently that is much more than average lol

He is wheat/gluten free at home and mostly at school however school keep messing up and giving him stuff nothing I say makes any difference sadly with them!

did ds have the biopsy or just the bloodtest?
If he didn't have the biopsy then the result may not be right.

He did have the biopsy, that is one thing we are going to discuss with the paed.

Apparently the paed I had before (who has since retired) was a bit 'flaky' (dieticians words not mine!) so hopefully will get someone a bit more proactive.

I'm frightened he'll have the biopsy, it will still be negative and we still won't know whats wrong.

I asked the dietician if she thought it could be just a simple intolerance and in her opinion, 'no' because he has such a severe reaction to any ingested wheat/gluten.