Coeliac and gluten free

[jwpetal]

Sorry I am not sure what to call this post. My dd is 5.5 years old has had problems with bloating and other issues that have led the pediatrician to put her on a gluten free dairy free diet. She has been on it for 3 weeks now and is much better. This morning she had a bite of wheat toast and has been unwell all day.

They did a series of blood tests for food allergies and to look at her vitamin intake etc. After we started the gluten free diet, I found out that they did not test for coeliac and that in order to test for this she will have to go back to eating gluten for 6 weeks before doing the test. I am a bit bemused as to why they had not tested for this before we started down this process.

I don't know if anyone knows this but Is this the normal procedure? How do they separate the gluten issue from the wheat issue? Can someone be gluten intolerant and not be coeliac? Blood/skin tests are all negative to a wheat allergy. My son had multiple food allergies so I am familiar with this, but my dd's reactions are different.

sorry for all the questions...

Yes it is normal procedure to test while gluten is part of the everyday diet and yes, it would have made much more sense to test before she stopped because people often have a much stronger reaction when it is reintroduced.

If you don't want to put gluten back into her diet, you don't have to but without a diagnosis I don't think she would get gluten free foods on prescription.

Some authorities can offer a gene blood test for coeliac. Has any close relative got any auto immune disease ?

I am coeliac and my understanding is that it is different to an intolerance of gluten as being a coeliac means you have an allergy to the gluten.

So with coeliac eating gluten causes all the little villi lining your intestines to invert so no vitamins and minerals can be absorbed leading to all sorts of issues.

Think with an intolerance to gluten you just feel uncomfortable and have bloating but no villi are flattened!

Gluten is in certain grains like wheat and barley and this is what coeliacs are allergic to.

It is real horrible that your dd has to go back on the diet, - I sympathise as my sisters (twins) both went undiagnosed and put themselves on a wheat free diet for years thinking they had a slight intolerance - aged 27 they finally got diagnosed. One private through genetic testing. The other through nhs and had a torrid few weeks on a normal diet before they would test her.

Coeliac society is great for advice. You can sign up to be a member and my sisters tell me you can not download a free app which tells you all about which foods on our supermarket shelves are gluten free!

thanks for the information. My sister has an auto immune illness and I will have to get more information into that, but it did not get diagnosed until her 50s.

My dd has had a lot of health issues so not so surprising that something is not quite right. I have an appointment next month so I will discuss the gene testing.

30% of the population have one of the coeliac genes so it won't get diagnosed from that, it could only rule it out if she didnt have the gene. It is used in addition to the blood test for diagnosis. They should have tested for coeliac but lots of HCPs just don't have the knowledge and awareness they should have.

You should try and get a diagnosis, it's not just prescriptions but ongoing consultant led care and annual testing to check her diet is gluten free (they test the antibodies) and testing for deficiencies like zinc, iron and scanning for osteoporosis etc. I imagine she would also be much more likely to stick to a strict diet when older, eg she could have small amounts of gluten that didn't cause obvious symptoms but be doing damage to her without realising.

Lastly you say she has a lot of health issues, coeliac can produce a huge range of symptoms. Take a look at the new website and put in all her symptoms to the assessment (you will need to put that she is currently eating gluten to get through the assessment but as you know she would need to be put back on it before having a blood test). www.isitcoeliacdisease.org.uk