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.

That's frustrating Ghost. How is your DS?

Driven my Ds is very sick, severe abdominal pain and nausea almost continually. I haven't reduced his gluten at all but once he has the blood test I will reduce it to two meals daily.

This is his fourth week of school. I am waiting on the year head to phone. I am not sure how long term ill health absences are managed.

I have thought about ringing coeliac uk but not sure what they can do for me. I just need to wait.

It is worth ringing Coeliac UK, Ghost, just in case they have any tips.

Has the blood test been ordered at a hospital? Does it have a ward name / number? I would be tempted to ring and speak to a nurse / doctor / whoever is in charge of the ward, and describe how ill your DS is and how much school he's missing. They may be able to move the test up. Being polite, but clearly a worried mother may help.

Our blood tests have been done on the children's ward at our hospital. I've rung before to get them rearranged (to have all the children done together rather than 3 separate appointments) and they were really helpful and fitted us in so that the least school possible was missed.

Our dog took ill yesterday. Straight to Vet, blood tests done and results back in an hour. Ds blood tests are on Wednesday. 14 days since we seen the consultant. 26 days since he last went to school or left the house.

I am very disappointed in the health service.

You need to get his HLA markers tested to rule out (or in) coeliac. Only consultant at hosp can order. If he hasn't got the gene he can't have ceoliac if he has he might. Before my son was diagnosed with wheat and gluten intolerance (like coeliac but not proven with the tests) I paid to have the genetic test done privately which showed I had the genes. I then had biopsy and coeliac diagnosed. Mine took over 15 years. As soon as I got diagnosed my don was rushed through (about 2 weeks) for biopsy which didn't show signs of coeliac. He has the HLA markers and has completely recovered on gluten free diet. He is still lactose intolerant . His main symptoms before diagnosis were constipation with leaking poo. It seemed like diarrhoea but resolved with regular senna. Milk gave him diarrhoea even though he was mainly constipated. The consultant tried to fob me off with encopresis but I knew something was causing it. Took 2 years from first becoming ill to going gluten free. I think if I hadn't been diagnosed as around the same time it would have been much more difficult.

The hospital phoned this morning and wanted to cancel the blood test as they have no staff. I managed to convince them that he couldn't wait any longer.

I have tried to ring coeliac UK to see if its OK to cut down the amount of Gluten now to two meals a day but it just goes to an answering machine.

I think I will need to counselling by the end of this I am so frustrated by the whole process.

Of course he could test negative, What then?

If he tests negative, I would still push for further investigation including an endoscopy/gastroscopy as there's clearly something going on and you need to know what it is. This is Coeliac UK's advice re: amount of gluten for accurate testing:

"If you've already reduced or eliminated gluten from your diet, you will need to reintroduce it to make sure you get the most accurate test results. While it may be difficult and uncomfortable, it’s essential for your long term health.

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."

So 2 meals a day should be fine.

Leave a message on the Coeliac UK helpline 0845 305 2060 and I'm sure someone will call you back. I found them very helpful in the early days.

Ds has been plagued today with severe nosebleeds. Apparently thats related to coeliac too. He is also I feel depressed. Another week to blood results.

Dd is to get a blood test on Thursday as she also has several symptoms.

The Coeliac blood tests have come back negative. They have prescribed laxatives and will review him in a month.

He is devastated and says no one believes he is sick.

What do I do now?

Push for that referral to gastro specialist, don't be fobbed off. Something's going on and you need a specialist to work out what it is.

Just reading your post, I think your son may be suffering from abdominal migraines (cyclical vomiting also has similar symptoms). Have a look on patient.co.uk and search for abdominal migraines and see if those features fit. (Sorry I can't link it... Bit rubbish typing on my ipad). If it sounds likely, your paediatrician should be able to tell you about what to avoid (possible triggers) and may suggest preventative medication. Didn't notice how old he is. It might be worth asking for assessment by a neurologist with a special interest in migraines. Migraines (abdominal or otherwise, often get worse going into adolescence).

I admit (don't shoot me) I'm a gp.. We're not all useless, some of us have children too with the same worries and concerns as everyone else. I've been looking at this thread as I think my daughter may have coeliac disease. Wanted to see how other children had presented with symptoms initially.

My ds is going through testing for coeliac disease - his df has it. His bloods came back negative for coeliac but low iron and low folate levels so has been referred for an endoscopy. The process is slow with getting referral from doctor to hospital. When dh had his blood tests his also came back negative for coeliac but the endoscopy showed he definitely did.

Thanks Artura, on further investigation Ds was diagnosed as having chronic migraine. Started on a drug called Topamax and doing really well.

The low Vit D and calcium seem to be a seperate issue partly due to milk free diet.

Thank goodness you finally got a diagnosis Ghostsdonttalk. And thank you Artura for suggesting abdominal migraine. Sorry if it sounds as though we're giving GPs a really hard time but unfortunately many of us on this board have had pretty bad experiences trying to get our little ones diagnosed. This was very true in my DS's case with his allergies etc but I have to say that it was thanks to a wonderful GP that my DD's coeliac disease was discovered so I haven't totally lost my faith in the profession! On the subject of coeliac symptoms, my DD's were very sudden. She went from being the healthiest child I knew to suddenly being bent double in agony at age 9 with chronic abdominal pain. I initially thought it could be tummy migraine as there's a family history and I also thought it may have been the early start of her menstrual cycle. I took her to the GP a couple of times and they agreed that it could be either of these but one day I took her and she looked so awful the GP sent her straight to hospital for blood tests to see if she was anaemic and that was when we found out she was coeliac. Her only other symptoms were heartburn, dry eyes and sores in the corner of her mouth. She didn't have any bowel problems other than the pain.