Could this be Coeliac Disease or something else?

[vigglewiggle]

DD2 (4) has asthma, eczema and has been diagnosed with peanut and hazelnut allergy. She has always suffered with a bloated tummy. Not just a bit rounded, but full-on ready to pop type of bloating. She also occasionally suffers with reflux when she laughs hysterically or runs around.

At her last follow-up appointment (12 months ago). I mentioned this to the consultant. At first he tried to dismiss my concerns - saying that it is quite common in young children. Fortunately I took some photos and having seen the extent of the distension he changed his mind. He ordered a Coeliac blood test which came back negative. Then we heard nothing more.

She has begun to get self-conscious and so we went back to the GP and she ordered an ultrasound. We went yesterday and my GP rang with the results today (worryingly quick). She has thickening of the bowel and enlarged lymph glands. Everything else was normal.

I have been reading about the symptoms of Coeliac Disease and she does not fit with a lot of them. She is very tall, normal weight, very strong, she is energetic (asthma permitting) and her bowel movements are normal.

We have been referred to the paediatric gastroenterologist. The GP wouldn't be pressed but she said they need to rule out infection. I suspect this was a bit of a diversion, but I don't blame her for not committing herself. Obviously I am worried and I would like to know now so we can deal with whatever the diagnosis is.

Any thoughts?

6yo ds1 suffered from reflux and bloating and I found it was connected to his tongue tie. The more he chewed, the more air he swallowed and the more bloated he became.

We had his tongue tie released and the reflux and bloating stopped.

He was allergic too (seems that a lot of tongue tied kids are) and was also negative for coeliac disease

Thanks mawbroon I'm pretty sure she doesn't have Tongue-tie. The GP did point out that her nose seemed quite congested (probably allergy-related) and that she may be swallowing air as a result. However, this was before the scan and would not explain the thickened bowel and lymph glands.

I think it's very good that you've been referred to a gastro specialist. False negatives are fairly common with the coeliac blood test so the specialist might want to do some other tests such as a biopsy to work out what the problem is. My DD was diagnosed with coeliac disease 18mths ago at the age of 9 and until 6mths before she had no symptoms whatsoever. In fact, she never had most of the 'classic' coeliac symptoms at all (eg no problems with her bowel movements, normal weight & height, energetic etc), the only symptoms were sudden onset tummy pain and reflux.

Coeliacs come in all sorts of shapes and sizes and symptoms vary hugely (including no symptoms). My DS had more obvious coeliac symptoms, but my concerns were still pooh-poohed by doctors for a year and a half, (I didn't know about coeliac then, or would have demanded a test) until an enlightened one sent us for the (simple) blood test.

Thank you. I've been doing a lot of reading and I think this is the most likely diagnosis, though not sure where the lymph glands come into it.

She underwent all sorts of tests as a baby because her extremities would turn purply blue (often after eating) and since she was born she has had swollen fingertips. Could this be connected to Coeliac?

It is interesting to hear that all of the classic symptoms need not be present and the blood test can give a false negative. Makes me rather annoyed that I had to push for further tests.

Took me about 3 years of rattling cages to get a diagonsis ....

My DS tummy swells (looks about 6 months pregnant) when he now has gluten. He had/has bowel issues but was very tall, skinny and looked healthy. The doctors kept fobbing me off telling me it was IBS/toddler diahorrea/bugs etc

Thanks pizza. I know what you mean about the pregnant look, that's exactly what she looks like. I am just waiting for the Paediatric Gastro appointment to come through, so watch this space!

I'm certainly no expert but could the enlarged lymph nodes be due to the bodies response to gluten. Coeliac is an auto immune disorder which causes anti bodies to be produced ie the body thinks its in fight infection mode which could cause swollen glands. My DD had elevated tsh ( thyroid hormones) before we were diagnosed they are now normal 6 mo later

Also my DD had a constant runny nose which I was told by several GPs 'is just one of those things' 'some children are snotty' etc etc after gong gf it's stopped again down to the bodies response to a believed infecection

Thank you mama. I've been doing a bit more reading and research and I think you are right. DD also often has a bunged up nose and has had grommets inserted recently due to her ears being constantly full of glue! I'm starting to think that all of these things are connected, but we are seeing the consultant on Monday, so hopefully will know more then.