Does this sound like Coeliac disease?

[Ghostsdonttalk]

My son has been ill for about six weeks, been to GP at least seven times.

He has severe reflux, abdominal pain, headaches, loads of smelly gas (sorry if Tmi), nausea and has thrown up a few times.

Strongish family history as two great uncles (brothers) both coeliac.

No fever and bowel movements look fine. I have ulcerative colitis but don't think it's that.

I have a paediatrician appointment next week.

He has missed 12 days of school since Christmas and been sent home sick five times.

Oh forgot to mention bloods showed up Vit D defiency but diddn't test for coeliac antibodies.

It does sound very similar to my DD when she was diagnosed a few years ago (aged 9) so you should definitely get him tested. Whatever you do, do not remove gluten from his diet until all the tests have been done as the tests won't be accurate if he's not eating gluten regularly (and trying to reintroduce is truly awful). Good luck, let us know how you get on.

Thanks Free, I think the Drs think I am wasting their time, they have said its not Coeliac as not anaemic. I am not so sure. Hopefully the paediatrician will listen.

Definitely get the paediatrician to test for coeliac antibodies, given your concerns and family history. As Free says, the test will only be valid if you leave gluten in his diet until the test blood sample has been taken.

Have you considered the possibility of lactose intolerance? DS had this come on suddenly following suspected norovirus infection followed by a course of antibiotics for an unrelated condition. He improved markedly as soon as we swapped to Lactofree milk.

Fossil he already is milk intolerant doesn't take dairy since he was 5-6 weeks he is now 12 years. I think there is a possible link with coeliac.

Fingers crossed next week's appt sorts things out.

Doesn't have to be anaemic to be coeliac - what a load of rubbish! My DD was sent for blood test for anaemia - results showed she wasn't anaemic but that she did have coeliac disease (which I didn't know they were testing for).

Doctors are often very ignorant about coeliac. It took 18 months of seeing a paediatrician before anyone thought to test my 6yo for coeliac (unfortunately I had barely heard of it before, and did not think to put together his various symptoms, I just knew something was wrong but not what). It presents in so many different ways - there is no one symptom that every coeliac has.

I was thinking 'hmm probably' until you mentioned the lactose intolerance. Now I'm thinking 'hmm almost definitely'.

I have Coeliac and was diagnosed as lactose intolerant first. 2 of my DDs are also coeliac and both were horrible sicky babies with suspected lactose intolerance. My other DDs (not coeliac) had no issues with milk at all.

Push for a test, but keep him on gluten until you get one as reintroducing it would be excruciating.

Thanks for replies, at this stage I just want to know what is wrong with him but also realise this would be a serious diagnosis which he will struggle to adjust too.

He is very sick, severe migraines, stomach pains etc been of school for 10 days so really hope to make progress on Thursday but realise blood tests probably take a while to come back.

How long for improvement once diet is started?

The effects going gf were very quick, within a few days he was happier, looked healthier, had more energy etc.

I am really struggling to leave him in pain until Thursday. He came into me this morning at 7:30 doubled over with abdominal pain. Calpol and nurofen have little effect.

Dm took him back to GP on Friday, he said it was constipation and gave more movicol. The movicol works but it doesn't help.

I feel so frustrated and helpless. I hope the paediatrician listens.

I completely sympathise - it is just awful to see your child in pain. I really hope the paediatrician is good, and gets things sorted for you asap.

I know how hard it is. When my DD was diagnosed she had to wait 6 weeks for biopsy even though they were 95% certain she was coeliac based on her blood test results. Continuing to give her gluten when we were so sure it was causing her such terrible pain was truly awful and totally against my instincts as a parent. Thankfully, the NICE guidelines have changed since then and they will normally diagnose based on positive blood test results. Please please don't remove gluten yet though, no matter how tempting it may be you really do need to get that diagnosis first otherwise it will be much worse if you have to reintroduce gluten for 6 weeks to do the tests.

I collected the referral letter for the consultant today. It reads Dear Dr, thank you for seeing this child AGAIN due to his migraine history. We have tried blah, blah etc

NO mention of abdominal pain, low Vit D, low calcium in blood tests or NO Growth in a year!!

Can anyone hear me screaming!! I feel like I am caught in a nightmare.

If I were you, Ghost, I would think about typing out a letter of your own to the consultant. In it I would put all the things you mention that the GP hasn't mentioned (vit D, calcium, growth.)

I would document all the symptoms, how long they've been going on for, and what's been done (and hasn't worked).

I'd lay it all out in a really easy to read way, so that when you go into to see the consultant, you can give it to them to read. That way, they will be getting a fuller picture. I would include the family history of coeliac and your ulcerative colitis too.

I think that the consultant will suggest testing for coeliac antibodies (among other things probably). But just in case they don't, I would be prepared to ask for that. In support, I would also print out these NICE guidelines about testing for coeliac disease and highlight all the relevant points (the list of symptoms matches your DC's symptoms on several points).

If the 'not anaemic' thing is mentioned, I would point out (politely) that the range of symptoms that coeliacs have pre-diagnosis is very wide, and each individual has a different presentation (and some have no external symptoms whatsoever).

I would also read up on what Coeliac UK say about diagnosis so that you're prepared.

I can't imagine that the consultant would refuse the test - there may be other things they also want to test for, which is sensible. I would also make sure that it's clear to you when the test will be done, and when/how you will get the results.

For a young child, blood tests are usually done at a hospital (rather than at the GP) by someone trained in taking bloods form children.

Good luck and let us know what happens.

Thanks Driven, i rang the secretary at the hospital this morning and she said not to worry as this consultant seen him last year for migraine. He has height and weight for him from then so will soon pick up on growth issues.

She also said sll blood test available through computers in this trust so consultant can access blood results which will give calcium and vit D etc

I am nervous now 24 hrs to appt

It took me six years to get my son diagnosed (this was years ago, he is now at university) - when we finally saw the consultant he had two trainee doctors with him. He asked me what had been happening and I (reading from a list of bullet points I had prepared) outlined what had happened over time. We'd been told he had a grumbling appendix, that there was nothing wrong with him, etc. etc. despite the horrible abdominal symptoms. This included the fact that we had been referred because my son had had an allergic reaction (extensive rash) to oats, followed by an allergic reaction to Rice Krispies (which contain barley) - that time his lips and hands swelled up - scary! I had gone to the GP the next day and demanded a coeliac blood test which he did. It came back low but that, I thought, was due to me having reduced his gluten to two slices of bread a day just to enable him to function - and the consultant agreed. He then turned to the two trainees and said, "Always listen to the mother." So DS was diagnosed both coeliac and allergic to gluten (carries an epipen).

Good luck with the diagnosis. DS recovered very quickly once glutenfree - and grew six inches in the following year. He was diagnosed at 14 and I had been putting all the grumpiness down to being a teenager but once glutenfree he was back to his sunny self.

Had the appt today. I took the advice and wrote my own letter. He was happy to test for coeliac but said he would be surprised if he was as he is not anaemic.

Also got abdominal xray. To go back for bloods. He has added in stimulant laxative to movicol.

I was right in that he hasn't grown and has fallen through a percentile on the chart.

My son wasn't anaemic when he eventually got diagnosed (but his favourite meal was and is fillet steak medium rare with stir fried dark cabbage and garlic)

The consultant also said everybody is low in Vit D this time of year. He didn't understand why he was even tested for that. His levels are 27 ( not sure what units are). GP said he was deficient it was good that it was picked up and put him on 5000 units D3.

I am confused.

notapizza - your DS has very grown up tastes. Yum!

Glad you got the test sorted, Ghost. Is the abdominal x-ray actually an x-ray or an ultrasound? My DS had an ultrasound before his coeliac diagnosis - it found vast amounts of gas in his digestive system. Stupid paediatrician we had at the time said that didn't indicate anything. Wasn't till we had a different doctor who ordered a coeliac test that we discovered the gas was because of the coeliac.

Yes it was definitely an xray it is to check for constipation. The paediatrician thinks that is what the problem is. But why is he so chronically constipated? Why has not grown? Why is low in calcium and vit D?

Anyway they are to phone on Monday to arrange blood test. I just want it sorted now!!! trantrumming mother

Glad you are getting the test - if only to rule it out. Hope you can get to the bottom of the problem soon so your DS can start feeling very much better. Even if the test is negative given you have coeliac disease in the family don't rule out the possibility of it being non-coeliac gluten sensitivity. This is now becoming a recognized diagnosis (though you don't get prescriptions obviously).

They can't do the test until next week!