Suspected Coeliac Children.

[Spookyoldclothcatpuss]

I've been browsing the board, and I want to pass this on.
If you think your child may be coeliac, don't cut out gluten until they have been tested. This is not just the blood test but the gastroscopy as well.
My DD became very Ill aged about 7. The process was quite gradual. One day, I decided enough was enough.
The doctor suggested coeliac, took blood and told me she would need a gluten free diet which we started immediately.
FFW six weeks to Great Ormond St hospital and a very upsetting interview with a paediatrician. As we had taken DD off gluten, the damage had abated and she would need to eat it again for three to six months. A row ensued, with the dr telling me that I was unreasonable, and IF she had a child she would do this, and if I didn't we wouldn't get a free food prescription. We left. Without our prescription.
It has been five years, and our new GP has just given us the prescription. We have managed without it, but shouldn't have needed to. It's hard to watch your child being I'll on gluten, but we have never had a 'formal diagnosis' and all through bad advice.

My son was just under 2 when he was diagnosed as coeliac. We were lucky as the paediatrician at our local hospital suspected it from first seeing him but didn't actually tell me what she suspected - had she done,I might have been tempted to immediately remove gluten from his diet.

Anyway, he had blood tests, a 3 day foecal fat collection (YUCK!) and finally the jejunal biopsy that confirmed him as coeliac.

I dont know how you managed without the prescriptions, the stuff is so expensive to buy off the shelves!

Great advice Spooky.

The same happened to my niece but when my boys were going through testing I had my sister telling me to stay on the gluten until all the tests were done - which I did. It was worth it though tough at the time.

If you are diagnosed with Coeliac Disease, not only do you get the prescription food but also regular checkups with the paediatricians/dieticians.

Can I hijack slightly and ask what your Dcs symptoms were??

DD (2.8) is now suspected coeliac.

She had the blood test last week and early Dec is having allergy tests.

Then if everything comes back negative she will be referred to Chelsea & Westminster hosp for biopsy....

She had pains in her legs and tummy for ages, ( a couple of years, told was growing pains!) then over several months she just grew more and more pale and tired. Couldn't manage to walk far, dad had to carry her. She wasn't eating much. I was scared she had leukaemia or something equally horrid. Coeliac was a huge relief!

Spooky, glad I found your thread, DS is going for blood tests tomorrow and if it weren't for threads like this on MN I may have been tempted to cut gluten from his diet.

It's worth hanging on for those few weeks before the tests. It takes quite some time to re do the damage once it repairs itself. Something I wasn't prepared to do.

I will do, thank you. Luckily we have a very good GP too so hopefully it won't take forever to be referred for the tests should the blood test come back positive for coeliac.

DD had the blood test last wk (2nd time havng it, first was when she was 18mths old)

She is now 2.8

I do expect it to come back negative like last time tbh

Interesting to read the symptoms though. DD is very little for her age (although stocky iyswim) and has constant diarrea and is tired etc...

She is having skin prick tests in a couple of wks then if all comes back negative (as I think it will) then she will have gut biopsy...

We had positive bloods for coeliac. Which is why I got so upset at G O S H. The doctor insisted that dd couldn't be diagnosed without a biopsy. It is the 'gold standard'. Even though her blood work pointed to coeliac, she had symptoms and it is in my family! they wanted her to eat gluten for three to six months so she could have a label and a free prescription. If she ate one biscuit she Was in agony for hours!

surely if test shows up positive then she has it???

TBH I am very reluctant for DD to have gut biopsy. My DS (5) has only just had a grommets op so I really don't want to repeat procedure (GA etc) with her as she is so young

But am at the end of my tether with the diarrea(sp) and she does not seem to be growing in height so now pead talking about her being overweight etc

Biopsy is the 'gold standard' test. No biopsy no prescription wa what I was told! Arrogant doctor told mr that IF she had a child, she would give it gluten for 3 to 6 months of agony to have the test. I told her to get screwed!
Basically, it comes down to wether you and your gp think your child is coeliac. If it is screamingly obvious, and you can live without the prescription, don't do it. If there is any doubt you really need to get a definitive diagnosis. It would be awful to miss something else, or to go GF without real need.
We did things the wrong way round, but were sure of the problem in the end. Cooking from scratch without gluten is easily with practice. We were told the proper diagnosis helps when kids get older and start to waver on the diet, but my DD is perfectly content with her situation, and has the option of putting herself through the biopsy when she can decide for herself.

I suspected my son had coeliac at age 2 after 18 months of him having horrid colicky pain after eating bread or weetabix. Then we discovered anything with flour did it to him as well. I took him off gluten before I saw my GP and then Paed so it was too late for a biopsy.

However I kept a food diary before seeing the GP as I felt I needed evidence to back up my suspicions about his pains being food related. I listed all the foods he had eaten and nappies/sleep/crankiness.

Anyway it turns out we got the diagnosis of coeliac and therefore the prescription, based on the food diary. GP said it was clear and so did paediatrician. When we then saw the dietitian she said she wished more parents would write down the foods systemmatically as often their concerns were dismissed by GP/Paeds too quickly.