Coeliac disease

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For those who have kids with Coeliac disease how did you get a diagnosis?
DD has been having stomach pains for months, Diarrhea and other symptoms that may point towards coeliac disease. DD's paternal Grandmother has it and we know it is hereditary. I wanted her tested just so we can rule it out. We've been do the doctor's a bazillion times but they are refusing to test as "it is rare for it to present in young children"
They would rather just have us going back and forth trying different antibiotics instead as they are saying it's "viral"

I wouldn't say it is rare but I have celiac's and I was told that it's a 10% chance of my children having it.
Not sure about 2nd degree relatives though was only told 1st degree relative.
I would ask to be referred to a paeditriction tbh if this has been going on a while, you might get somewhere with them.

To be fair, I wouldn't have much faith in a GP who says something is viral whilst at the same time handing out antibiotics! It's worth looking for a referral in to paediatrics for ongoing care as there is clearly something going on, be it coeliac or not

Say this is in your family and that you would like the blood test (it’s a two stage process) to exclude it. We waited 3 years for a test and the move to a gluten free diet has been life changing for DS.

If you are refused and you feel strongly you might just decide to move to GF and see if it has a positive impact (took about 6 months for us to see this). Wish you well DFP.

My Dsis was diagnosed at the age of about 2 or 3, 40 odd years ago. Blood tests weren't available for it then, diagnosis was by endoscope. So I can't see that your Dd would be too young for a test.

Blood tests for coeliacs aren't always reliable as they can show a false negative; the only way to completely rule it out is with a gut biopsy (I think).

If you plan to persist with getting your DD tested, it's really important not to cut out gluten from her diet beforehand.

My DD has coeliac disease and was diagnosed at 8

She had to eat a lot of gluten for a few days then went for a blood test. That came back positive so she was sent for an endoscopy.

Our GP suggested it, we have no history in our family and it hadn’t occurred to me - I’d assumed she had some sort of nasty tummy virus that was hanging around

My 9 year old DS has coeliac disease. He was diagnosed by a blood test which came back at a level sufficiently high that he didn't need the biopsy to confirm the diagnosis. He had fairly non-specific symptoms the main one being that he was extremely tired and we were very lucky that the GP ordered the blood test as part of this first investigations so we got the diagnosis within a few weeks of first going to the GP which I think is quite unusual. He is almost completely better again since cutting out gluten.

Have a look at NICE guidance on who should be tested for coeliac - I think that based on his symptoms and the family link that should be reason enough to test. Perhaps taking those with you when you next go the GP might help? Another option is to cut out gluten completely and see if she is better. Although reassuring to have the diagnosis I don't think it is essential. The main benefits of a diagnosis are that in some areas you can get gluten free prescriptions, you get referred to a dietitian to help manage the gluten free diet and you have annual check ups. The problem with going gluten free is that the tests don't work once you cut out gluten so it is then almost impossible to get a diagnosis without having to go back on a gluten free diet which would be very hard to do if you think that would make you (or your child) ill.

Thank you everyone. It’s just very frustrating. We will be keeping her on gluten until anything is confirmed.

There is some useful information and videos on Coeliac UK's website re coeliac disease and children see: www.coeliac.org.uk/coeliac-disease/coeliac-disease-in-children/

They also have a helpline which might be worth calling so you can have lots of information to go back to your GP with.

But yes very important to keep gluten in diet until all tests are done.

Good luck!

Although reassuring to have the diagnosis I don't think it is essential

I agree to be honest.

Our area don’t do GF on prescription anymore and DD always said it was minging anyway.

The bit between the positive blood test and the endoscopy was awful - we all knew what was causing the horrendous tummy aches but we had to continue to feed it to her.

I wish we’d just cut out the gluten and been done with it

Dd was 4 when diagnosed. But should have been tested way earlier
You do need the diagnosis as you then get annual testing blood tests access to dietician etc. And if you know for sure you won't cheat. Which could lead to other health issues if you coeliac

I cannot believe that attitude, you are doing the right thing pushing if concerned. A simple blood test at minimum. My daughter is only 4 and was officially diagnosed coeliac start of this year. It was a long wait to get the referral to the paediatric gastro but as soon as they knew it was in the family they said absolutely to do a blood test. This indicated she had it and we were told to observe as her symptoms of stomach pain and diarrhoea had subsided and they gave her an inconclusive endoscopy. A few months later symptoms returned and she began throwing up each night as well. They immediately said to go gluten free and she improved over night. 8 months later with bloods saying same they said she was officially coeliac as recently they had decided bloods were as conclusive as endoscopy in new research. It's good to catch them young to prevent the damage and sometimes the endoscopy is inconclusive because of the early age and damage not really there yet. Good luck xxx