Coeliac quandary

[asante]

I think I've posted on here previously about my daughter (5), but, a bit of background:

Since July last year she has been 'not right' - 'failure to thrive' describes it perfectly (seemingly triggered by an 11 hour overnight flight). She would sleep for 12/13 hours, get up looking completely shattered. Was very pale, dark circles under her eyes, no energy, grumpy, anti-social, unpredictable. Like a personality transplant.

From January onwards she also complained of sore stomachs, aching arms and legs and had permanent loose stools.

Blood tests showed she had very low ferritin levels, but all else normal. We were referred to see a neurologist specialising in sleep, who said she wasn't suffering from nocturnal epilepsy. She then had her adenoids and tonsils removed, as it was thought she had sleep apnoea. Yet, still the symptoms remained the same.

After researching myself, I thought that perhaps this could be coeliac disease. My GP was happy to do a blood test, but my dd point-blank refused to get it done (not surprising really after all the above that she has been through). So, the GP recommended going on a GF diet for a month.

The month is up and she is a totally changed child :) No more bags under her eyes.....so much more energy and she just has that rosy glow about her again. I'm going to take her back to the GP again next week, but I'm unsure how to proceed with this now. I managed to get her do a self-testing kit for coeliac at home before we started the diet and it came back negative. If i push for a biopsy, she'll have to go back on a gluten diet, right?? Not sure I can put either of us through that again. I could really do with some professional input from a dietician though as this is a life-long condition. Also, what about getting help buying the (very expensive) GF food through a prescription?

I am not an expert but reading this stuff might help you think about things for when you see your GP.

www.coeliac.org.uk/healthcare-professionals/paediatrics/diagnosis-of-children

I'm really annoyed at your GP for suggesting going gluten free for a month as this is totally against recommended guidelines. It would have been far better to give your DD a bit of time to come around to the idea of the blood test (it's very quick and hardly any pain as they use numbing cream on children) because now you're in the awful situation of having to reintroduce gluten in order to get a definitive diagnosis. Both the blood test and biopsy require the patient to be eating gluten regularly for 6 weeks beforehand in order to get an accurate result. Re-introducing now will be extremely difficult for you and your child but most local health boards will not prescribe gluten free foods without a positive biopsy result plus you're unlikely to be entitled to appointments with a dietician either. Sorry for sounding so negative but I get really fed up with GPs not doing their jobs properly. From the history you gave, they should have tested for coeliac disease in the first place.

I know the guidelines say blood test then biopsy for diagnosis but we have had consultant paed refuse this for dd (symptomatic , Dad confirmed coeliac). He made it sound like I wanted to put her through intrusive procedures for no reason and referred us to paed dietician and put her on a gluten free diet. Interestingly DS is under a different paed as the same hospital and they want to test him annually (low ferritin corrected on supplements). I've been a bit about it all but dd is thriving on new diet, we are in Surrey so prescriptions are useless anyway and dp agrees with the doc. Too late to go back now as I wouldn't put her back on gluten now.

What am i trying to say? I guess not all paeds are following the party line. My main issue is that we will struggle when she is older and rebels against diet but dp says we will deal with that then.

Do you know if prescriptions in your area are on what they are calling a "restricted list"? In Surrey you can only get the old style bleurgh long life bread and flour.

That's a tough one.

I have celiac disease but am not "diagnosed" with it as I'd already been on the diet when I was tested.

For me it's simple though: if I eat gluten I am exhausted, get screaming stomach pains and huge sores in my mouth. If I don't, I don't.

Thankyou so much for your replies.

We tried so hard to get the blood test done during about four appointments, but she was fed up and we could tell she wasn't going to be talked round (bribery had worked on all previous occasions!) The home testing kit was negative anyway, so it is probably a false negative and we'd need a biopsy. In a way, I'm just so relieved to see improvements in her - I'd convinced myself that she had Leukemia at one point. But, it would be good to have some professional involvement - will see what I can get out of the GP next week.

LunaticFringe Her Ferritin level was at 20 (right at the bottom of the normal spectrum), but rose to 50 after three months of supplementation. Apparently low ferritin is associated with restless leg syndrome, which my dd definitely did suffer from as well in the midst of all this (during her sleep).

The whole ordeal has been almost a year of hell. I've had to push to get any kind of help at all from the GPs and not one of them mentioned to me the possibility of Coeliac disease. I remember when we were trying to get the blood test done and the GP was saying 'Come on dd mummy thinks this is important for you to get done' grrrrr. Planning on changing practice very soon.

you definitely need a new gp. All ds and dds blood tests are done at the paed clinic. They have people used to tiny veins. We put the numbing cream on 40 mins before then in and out with no fuss.

Just to add that home testing kits for coeliac disease are highly unreliable. Good luck with the GP, I hope you can get some useful help and advice - sounds like it's about time!

Hi! ive read the post with interest as im an adult gastroenterologist (hence my name!!) The current standard of diagnosis is exactly as you have all stated- stay on a normal diet, get a blood test (best one is TTG) , confirm with a biopsy. Both the tests are likely to be negative in case of a gluten-free diet.
The correct diagnosis is important for various reasons including nutirtional deficiencies (if not done via a dietician/gastroenterologist etc), insurance and a lifeong diagnosis (or not). There are patients who have gluten intolerance (different from coeliac, as the latter is a real allergy, as opposed to the former).
There are genetic tests available (though not all gastro do it)- which is a blood test not altered by a gluten free diet. There are problems with interpretation- but you can suggest to your GP that a referral to a paediatric gastroenterologist might be really useful. Prof David Sanders in Sheffield is the UK expert in this condition. He is also the expert on the coeliac UK website.
Home tests are useless- I do not recommend them because of too many false positives/negatives.
Hope things can be sorted for your daughter soon!! Good luck.