To not take Paediatrician’s advice (gluten related)

[bellylaughs]

DD16 has been diagnosed with a gluten intolerance, low iron and low Vit D after we took her for tests for shortness of breath.
This has come as a complete surprise to us. There are no allergies in family (except a bit of hay fever) and she’s never had any gastrointestinal or other symptoms.

The paediatrician put her on supplements for the iron and VitD and asked her to go gluten free for 3-6 months and monitor effects.

She has just come up with what I think is a reasonable point; if the shortness of breath goes away, how will we know if it was the iron or the Gluten free? Should we wait til after the 6 weeks of iron supplements to start gluten free if nothing has changed?

The whole thing is a bit baffling, she doesn’t have any of the other symptoms of gluten intolerance and it seems a bit extreme to go gluten free. Although on the other hand the blood test (DGp - igg) definitely came back positive for gluten intolerance.

Does anyone else have experience of anything like this? Any advice would be great.

The autoimmune reaction to gluten in coeliac disease causes villous atrophy. If someone is just intolerant to gluten, they can't have villous atrophy because if they did they'd have coeliac disease! If someone has iron deficiency and normal villi it's from another reason for iron deficiency such as diet related - lack of iron foods, excessive milk (commonest cause in kids in western world) etc. Various foods like tannins and oxalic acid inhibit iron absorption which is why people with haemochromatosis often drink milky tea with meals. Or other reasons for iron deficiency such as blood loss. It's not related to any non-coeliac gluten sensitivity per se, but could be a reflection on cutting out fortified foods like bread and cereals so total iron intake per day might fall. If your villi looked normal, they should be able to absorb iron.

Having said that, there are some people who no matter how much iron they take in tablet form just can't get their iron levels up, despite normal histopathology. I'm not a gastroenterologist but I'm not aware of any clear medical pathophysiological explanation for that, maybe someone else does.
Apologies for derailing OP.

Agreed that biopsy is good provided you are not already GF for an extended Period. The test only works well when you have had a significant proportion of gluten in the diet and when a couple of of grammes makes you ill it's hard to stomach the huge quantity they need for as long as they need for a clean test.

Well the OP's daughter isn't gluten free and relatively* asymptomatic so could continue for a reasonable time until a biopsy can be done. The only thing I can fathom is the paediatrician has limited access to send a 16 year old for a biopsy in a reasonable timeframe so has advised to go gluten free anyway.

*I say relatively, OP because many "asymptomatic" coeliacs don't realise how well they could be feeling after they properly exclude. Most report improvement in things they never took to be a problem, just accepted as part of life.

That's not true, its not that simple. Crohn's disease can also cause villous atrophy and people with crohn's can also benefit from a gf diet. But the reality is that the lines are blurred. My current dignasis (6 years in) is atypical crohn's disease with severe gluten intolerance/? coeliac's disease. I have atrophied villi , an ulcerated small intestine and cannot tolerate even trace amounts of gluten but my blood test for gluten antibodies is negative. Further blood tests have shown that I share the genetic mutation necessary for coeliac's disease. Basically I can stay relatively healthy as long as I am strictly gf but my gut hasn't made the sort of recovery you'd expect in a coeliac.

I didn't say it was the only cause of villous atrophy. I said the consequence of the autoimmune reaction to gluten in coeliacs is villous atrophy. The second part of what I said relates to the general view that gluten sensitivity with normal biopsy is not coeliac whereas in most cases gluten sensitivity with abnormal biopsy is coeliac. There are always unusual cases that don't fit the bill. IBD commonly doesn't follow the rules which is what makes it such a complicated disease. A small population have negative antibodies. Your diagnosis sounds interesting, I wonder if the IBD component impairs repair, or similar.

But it doesn't change the fact the OP's DD having raised Gliadin, iron deficiency and Vit D deficiency is coeliac disease, until a biopsy proves otherwise.

Why dont you give Coeliac UK helpline a call 0333 332 2033 and speak to one of the experts who might be able to answer some of your queries. You dont have to be a member of the charity to call them and they'll have lots of useful advice.