Coeliac and including gluten in diet for testing

[Mamasunshine]

Ds aged 2.8 has multiple allergies. He's always been intolerant to wheat (RAST was negative), has severe diarrhea, blisters on bum to extent that bleeds within an hour of eating even a tiny trace of wheat (such as stock). So he hasn't eaten wheat at all for almost 10 months. Which has meant he's been almost completely gluten free.

His growth has been very slow, he's dropped gradually from the 98th centiles to nearly the 25th for weight and 98th to 50th for height. He has Pale skin, dark sunken eyes, lack of energy, very moody, eczema.

In the new year we were asked to put him on gluten for 6 weeks to test for coeliac disease. Now I couldn't bear to put him on wheat as his reaction is so severe, so I gave him spelt every day for 6 weeks. Within this period his stool changed from normal mid brom to very yellow and very very lose, he was complaining of tummy pain daily - this really upset him, and he lost 24grams of weight - all the weight he'd put on in last 8 months!

His coeliac blood test has come back negative. Th day we had the test I took him off gluten as he was getting quite poorly. He has improved since then, stool back to 'normal' they float and have undigested food in. His liver enzymes are high, but have come down a bit since removing gluten too.

The paediatrician said it isn't gluten, however after speaking to the specialist in Birmingham they're doing a more expensive test and he's being referred on for endoscopy and biopsy. I asked if I should put him back on gluten for that and he said no?

So do you think I should put him bak on gluten and if so should I really be going down the wheat route and just try to help him through the symptoms ? Worried about more weightloss etc for 6 weeks.

Speaking to the paediatrician today so going to ask again.

Thanks for reading!

Have spoken to the consultant and he does have to go back onto gluten but not to do it until we've been to Birmingham and seen the specialist first due to his symptoms and weight loss etc. However, even though gluten is obviously involved, they think there's something else which is the main cause due to his ill health when he was on a gf diet. Not really sure what that could be?

Mama - I have a complex atypical gluten intolerance. I am seeing a specialist and having my children tested.

As my specialist explains there is new research thinking emerging that 'classical' coeliac is just one manifestaion of gluten iontolerance and that it can appear in many forms that are just as serious. It can produce over 300 different symptoms. Your DS sounds quite typical in his symptoms and the fact that he improves so much after withdrawing gluten is a strong indicator.

Don't be fobbed off - unfortunately many doctors stop looking once the tests for 'classical coeliac' come back negative. Your DS sounds very unwell and gluten intolerance is not a well understood condition made much worse by our modern diet.

Thank you, I have had to push and push but at last I think we're on the correct route. At least we have an urgent referral to the gastro specialist now so should be seen within 2 weeks. See I was putting his lethargy, paleness and dark eyes down to vit d deficiency due to coeliac. We had a 2 week holiday in a hot country over Xmas and he wAs hugely improved, he actually looked healthy and glowing, but the paediatrician said it would take months to correct the vit d def if hat was the case?! Whereas I assumed as it was sunshine the conversion would have been quick?

Very interesting about being tested, is that for the gene? I have 2dcs so I will see about testing them and maybe myself and dh too?

There are a variety of tests. There are some tests for genes, mostly they test for specific antibodies. You should also obviously have tests done for vitamin and mineral deficiency as well as things like diabetes, thyroid and so on.

Yes they've done all the tests re vit, thyroid etc. they've actually been very thorough investigating anything it could be as the coeliac test came back negative and everything else is fine, apart from his liver enzymes that are high. They even had to rule out some cancers etc last week which was very scary so he's had chest x-ray, ultrasound scan etc. all fine! I'm sure it's coeliac but he's not due to test, although dr said its obviously playing a role. They are doing further coeliac blood tests on him from blood taken but I think they've come back negative too

The biopsy will be able to give a definitive answer to the coeliac theory. The blood tests can have false negative results but the biopsy will give accurate diagnosis.