Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Allergies and intolerances

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Dd coeliac test

10 replies

Donthackmenow · 05/03/2015 19:31

Dd is 5 and has been wheat intolerant (diagnosed by paediatrician) since the age of 2. Recently the paediatrician has requested she have a coeliac test, the last one was negative, so she has been eating wheat since Saturday.
At first she didn't seem to be reacting too badly but as the week has gone on she has got steadily more emotional and tired. She is desperate to be able to eat wheat and so denies there is anything wrong but school and after school club have both reported 'meltdowns' which she has never had since starting school. She is asking to go to bed at 6pm, normal bedtime is 7.30pm and today she fell asleep in the car at 5.15. She has the sunken, heavy eye look and can't be bothered to do her reading (she loves reading).
The thing is I don't think she is coeliac so I imagine we will still get a negative test. So my question is, is it worth getting the test done or not? Anecdotally she certainly seems to react to wheat and my husband can't eat it either so should we just make all of our lives easier and stop the challenge?

OP posts:
Floralnomad · 05/03/2015 19:36

My daughter has coeliacs and I think it is definitely worth getting a diagnosis so in your position I would continue and rule it out once and for all .

glutenfreecake · 06/03/2015 13:06

would the paediatrician consider getting the genetic test done, as this can be carried out without need for her eating wheat. if she comes back negative for that then no need to test for coeliac. if it comes back positive then it would be worth getting the coeliac blood test done and continuing with the wheat challenge.

bringmejoy2015 · 10/03/2015 13:29

This reply has been deleted

Message withdrawn at poster's request.

TheCarrotsDontWork · 10/03/2015 13:44

What makes you think she is not coeliac? I have a coeliac DC who had many symptoms, including the ones you're describing (severe lethargy, irritability). I totally understand that it's horrible feeding a child food that makes them ill (been there, done that). And you'll have to do it for six weeks before the blood test, which could be awful. Is she having any other symptoms like bloating, tummy aches, yellow floaty poos, wind, "glazing over" (a kind of fazing out, staring into space thing which lasts for a few minutes at a time)

But for a coeliac, it's critical to get diagnosed - for example, it's not just wheat that coeliacs need to cut out (barley and rye, and non-gf oats). Also, they need to be much, much more careful about small amounts of gluten, including cross-contamination than do people who are 'just' intolerant. And also, they are entitled to further health monitoring, which significantly helps with keeping the diet to the required standard (annual blood tests to check for antibodies etc, gf food on prescription etc.)

I second the person who suggested a gene test (HLA-typing blood test). I wouldn't stop the diet now, since it would be awful to have to restart again a few weeks later. Instead, I'd go ahead and request it straight away whilst continuing the gluten-heavy diet. If the results come back negative, you don't have to continue. But if they are positive for the DQ2 or DQ8 "coeliac" genes, then you can feel confident in what you're doing (though note that about a third of the population have those genes, though only a smaller proportion of them will be or become coeliac).

By the way, I think your husband should be tested for coeliac too.

bringmejoy2015 · 10/03/2015 14:44

This reply has been deleted

Message withdrawn at poster's request.

ChampagneAndCrisps · 20/03/2015 22:14

Long story - but I really thought my DS was coeliac when he was young because of the severity of his GI symptoms. Ultimately he's been shown not to have the genetic tendency to coeliac - so now he mostly avoids gluten but can have it when he's with friends. He's diagnosed as gluten intolerant non coeliac.
So it's worth trying to get some clarity so you know how strict you need to be with your daughter in the future.
I think it's all quite complex if you don't get the right testing done early on. The genetic test doesn't always clarify things, but can be helpful.

Donthackmenow · 28/03/2015 21:53

Sorry to take so long to come back to this. Dd has had 2 previous coeliac tests come back negative- one at 15 months and one at 3.5 so I guess this is why I believe she isn't! The paediatrician thinks that she might be getting false negatives as her reaction seems quite strong.

We have continued eating wheat and have been keeping a diary. She has been very emotional, having meltdowns most evenings. Her concentration has decreased and she refuses to read her reading book. She fluctuates between hyper and exhausted. The snot pouring out has increased significantly and has left her lip irritated and sore. She is complaining of being tired a lot and has been going to bed earlier. Poo wise, it is one extreme or the other- we went to drs yesterday about something else (she has damp (not wet) pants everyday) and he thinks she might be constipated. She is complaining of headaches and tummy aches every couple of days.

OP posts:
Donthackmenow · 28/03/2015 21:55

My dh tried to eat wheat for a coeliac test but couldn't tolerate the symptoms and decided to abandon the idea.

OP posts:
MarvellousMarbles · 29/03/2015 12:48

It''s not uncommon for under-7s to get false negatives on the coeliac test as their immune system isn't fully developed so they don't produce enough antibodies to register on the test.

My then-3yo had a negative test, despite having the same symptoms as his diagnosed-by-endoscopy older brother. We went fully gf with him, as agreed with paediatrician, and will do a gluten-challenge and another test when he's over 7. Not a big deal for us as we were doing it for DC1 anyway, and having seen the damage that gluten causes a coeliac (took 2 years to diagnose DC1), don't want to put another child through that. Symptoms all disappeared after going gf.

PHANTOMnamechanger · 03/04/2015 13:23

carrots said it all.

New posts on this thread. Refresh page
Swipe left for the next trending thread