One in 450,000?

[emma_in_dream]

If the odds of coeliac disease are one in 150 and the odds of NF1 are one in 3,000, are the odds of getting both one in 450,000? Is that how it works?

Comments

[lauredhel]

I think so - I can't find any evidence of a genetic link, and there is one case report of them occuring in the same patient. That case report includes notes that there isn't necessarily a link, but that although gastrointestinal issues are common in NF1, coeliac should still be considered as a coincidental diagnosis.

The only real link (or 'link') I can think of is that kids with NF are more likely to have plenty of paediatrician contact, which might mean that CD (which flies under the radar a lot) is more likely to be diagnosed if present.

[fred_mouse]

Even if NF1 kids are more likely to have pre-existing coeliac disease identified, wouldn't that just push up the rate of identification, rather than changing the interaction between the diseases? So having one of the conditions is independent of having the other, but having one diagnosed is not independent of having the other?

[emma_in_dream]

My kids certainly get a lot more medical supervision than most, so no doubt every little bump is investigated. (Eg. M's ongoing complaints about her knees hurting are logged by me on the advice of the neurologist.)

[fred_mouse]

I wonder though, whether that means that their complaints are taken more seriously as well,which would tie in to the increased chance of diagnosis. Middlest has been complaining about stomach/abdominal pain for a while. Probably two years ago, the doctor I took zer to said "kids this age are prone to these kinds of pain, don't worry about it". Currently, zie has made the choice (with no suggestion from me) to decrease/cease wheat and dairy intake, and is much happier. I'm planning on leaving it a month or so, to let the situation stabilise, and then look at what can and can't be reintroduced, and at what frequency (I have hopes of getting everything back, but not of everything being 100% fine).

Similar response to the sore knees. My chiro of the time listened to the complaint about knees, got zer to do some simple movements, and recommended some basic strengthening exercises, which I gather help, when zie will do them.

[emma_in_dream]

Perhaps their complaints are taken more seriously, as I am always thinking tumour! tumour! tumour!

And then it always turns out to be regular growing pains.

How little gluten does middles now have?