I note these new guidelines have recently come out and I have now had a chance to look through them. You can read the whole thing below on Medscape but here are some salient points I picked out for you, and my comments, of course!
Joint BSPGHAN and Coeliac UK Guidelines for the Diagnosis and Management of Celiac Disease in Children
Note: I am not even going to go down the line of asking why we are only looking for gliadin antibodies and DQ2/DQ8 as you all know that I think that is too short-sighted and is likely to miss the larger group who have another form of gluten illness like NCGS. See here for my thoughts on testing if you need to remind yourself.
First, I welcome their stated aim of ‘simplifying and shortening the diagnostic process in selected cases’ since we are all too aware of how many hoops we have to go through to get a coeliac diagnosis. As they say, this is an important strategy because
it is recognised that approximately 90% of cases remain undiagnosed
90%! That is massive isn’t it?! They are calling for coeliac disease to be
considered in juvenile idiopathic arthritis, epilepsy with associated intracranial calcification and unexplained neurological problems (palsies, neuropathies, migraine).
After that, I find the document a bit hard to read. Not because of the way it is written but because I find it frustrating. It has the usual contradictions you tend to get with coeliac advice re oats etc, but also I think it puts the needs of the patient far behind that of the physician which is a shame. In essence, they are advising that children have to fit a very narrow criteria of (flawed in my opinion) blood testing to get a diagnosis and, if they don’t, they should not be trialled on a gluten free diet:
Anti-tTG antibody positivity alone is insufficient for diagnosis. Therapeutic trials of GFD are NOT indicated if CD is suspected.
Children should not be started on a GFD on the basis of an antibody test alone, unless their clinical condition is so poor that treatment cannot safely be delayed (eg, coeliac crisis).
Later on, though, they admit that:
Small amounts of gluten ingested regularly can cause mucosal changes even if patient feels asymptomatic.
Which is why I am always on at you to limit exposure as much as possible! For people like me who get nasty symptoms, it is easy to see, but the more difficult cases are those who don’t have them – it doesn’t mean the damage isn’t going on. I hate having to bear those bad tidings all the time, but there you have it: even coeliac officials say it so not just me, promise.
Here, in effect, they are recommending children keep on gluten and take the risk of mucosal changes (read inflammation and gut/absorption damage, let alone neurological, joint, skin etc). They also suggest that children with positive DQ2/8 gluten genes (and presumably with enough suspicious symptoms or a family genetic predisposition to have brought them to the clinic in the first place), should
continue surveillance (optimum frequency for repeat blood testing unclear, but every 3 years is reasonable if asymptomatic) and perform endoscopy if symptomatic.
Every three years! Plenty of time for mucosal damage then. Before testing, they should have:
Three months challenge with adequate gluten intake and A minimum duration of 4–6 weeks for those with symptoms during gluten challenge is recommended to maximise the likelihood of clear diagnosis.
In other words, we are telling children to continue to do damage to their gut/mucosal architecture until there is enough evidence for a diagnosis. And we are asking them to suffer symptoms for at least 4-6 weeks. I think that is cruel. I’ve seen many families trying to get their child to eat gluten for a test and breaking their hearts over the pain their children are in as a result. Talk about guilt. That’s precisely why I introduced the full gene testing to the UK to give them an option.
The other contradiction is the usual oats one. First they say that:
Oats are safe for most patients with CD, although around 5% of patients will be sensitive to oats.
but then recommend treatment starts with a
strict GFD excluding oats and consider reintroduction when baseline of wellness achieved, often after at least a year on GFD. Monitor carefully for signs or symptoms.
I still think there is too much confusion in this issue. Just give up, for goodness sake, and admit that it is unlikely to just be gliadin that causes a problem. How do they know that one of the reasons the majority of coeliacs do not heal on a traditional GF diet isn’t because of their continued consumption of oats or corn or whatever? They don’t know. It might not be but it could be and I would bet on it being involved myself.
And, if you think it’s just me having an issue with these guidelines, see here for a different rant! Dr Rodney Ford, an New Zealand gluten doctor, put it rather nicely, I thought:
It is my opinion that children should be treated as early as possible. They need to have the opportunity to grow and feel well. Elevated levels of TTG, EMA, and DGP are very likely to be early celiac disease. Especially, if the child has gluten related symptoms. And especially, if they are positive for the DQ2/DQ8 alleles. It is also likely that early gluten avoidance will lessen the chance of later autoimmune disease.Would you let someone with high cholesterol levels and high blood pressure wait for treatment until they had a heart attack?
I’m sure the guideline creators have the best interests at heart, of course, but I really think that in this day and age we shouldn’t be ignoring patient stories and waiting until there is enough damage to get a diagnosis. My advice, very different to the official ones I grant you but borne of personal and clinical experience, is that you should trial a GFD if symptoms are present but also if there is a family history, any of the DQ genes are positive and especially if there is even a single a positive gliadin or gluten antibody. I wish someone had done that for me and I hadn’t had a diagnosis put off as ‘IBS’ for years until significant mucosal damage had been done.
Still, on a positive note, at least the issue is being looked at. Don’t forget too that the Gluten Summit with the world’s leading gluten and NCGS experts – including Dr Ford – is starting soon. Listen in. Please. The aim of the summit is to move gluten knowledge forward by at least 5 years and that is what we really need now.