Coeliacs - negative blood test but all the symptoms. Any advice really welcome.

[AubergineKenobi]

My DD is 3.4 years. She has always suffered with a sensitive stomach: complaining of tummy pain most days since she could talk. She gets frequent stomach bugs and her poos are always loose and pale. She is small for her age and has almost no hair, it is like a 6 month old's hair - v thin and fine.

DH's mother has coealics. When DD was 2.5 we got a referral to a consultant paed due to her stomach pains. He thought that her family history combined with her symptoms suggested coelaics but he did the blood test and it was negative. He discharged us. I have since heard that the only definitive test for coeliacs is an endoscopy. We were not offered one.

DD's symptoms persist. Should I ask for another referral? How likely is it that the blood test was wrong? Should I just start a gluten free diet and not have further testing (I understand that you cannot have testing while excluding gluten as you may get a false negative). DD is particularly sensitive about her baldness and DH's mum had alopecia as a result of coealiacs. Once DH's mum was diagnosed and started excluding gluten her hair all grew back. Have others heard of this?

I was told with my ds that for children under 16 blood test can be inconclusive, was offered biopsy but declined and we went gf, best thing we ever did (my ds suffered for years).
Thing is the more gluten you eat the worse damage build up, so if you want to satisfy drs then feed her (a lot) more gluten. I felt it was cruel to carry on and wanted to see him better asap.

You don't really want her discomfort to develop into a full blown autoimmune condition (hair loss sounds that way) but this is what is likely to happen if you don't convince your dr that you are willing to do diet trial. I think if you ask the dr might even agree to refer you to dietitian if you need them, although I just did it all on my own by reading in depth.

After diet trial our dr agreed to treat-as celiac and we were given access to prescriptions, but I only ever got as far as getting samples as realised that substitutes would not restore health. We don't have bread at home now and I use mostly fresh foods etc, it's more time consuming and more expensive but I think it's worth it.
There is lots of excellent advice and info on celiac.com and gluten file.

eg - see here

another one

I would get in touch with the coeliac society. IIRC in children you can get a false negative, the only way to confirm is a biospy.

I only got the biospy when I really threw my toys out at the hospital and shouted at the doctor (not to be advised but had had 3 years of being fobbed off !!!)

A friend who's younger child was diagnosed at about 3 has just had her second teenage daughter diagnosed, despite getting several negative results when younger. Because she is milder then it didn't show up as early.

Suggest you try giving up gluten and see what effect it has.

Thanks for all the advice everyone. I am going to try and call the Coeliac UK helpline today and see whether they would advice pushing for a biopsy or just starting the diet. I have read that the diet has to be really strict with an all-or-nothing approach to every crumb of gluten so I am slightly reluctant to impose that on the family if it is not necessary.

Just bear in mind that celiac is the tip of the iceberg of gluten issues. Search for gluten intolerance or gluten sesnitivity, this is a bit of a grey area before you get to full blow celiac..

For me, prevention was more important than ploughing on regardless :)

My DD had similar symptoms when younger. Blood test negative. On consultants advice we started an elimination type of diet - including gluten free etc. Turns out problem was caused by the squash she was drinking - culprit appears to be aspartame (sweetener) and also E110 colouring (which was in the antihistamine she was taking). Nowadays, she is a different child but avoids all artificial colourings (much easier now) and any aspartame drinks - all Sainsburys stuff ok. Also takes antihistamines. May be worth keeping a diary of all food and drink, and symptoms.