Coeliac kids - advice wanted please

[redridingwolf]

Hello there. This seems to be the place for coeliac threads (though everything I've read says that coeliac is an auto-immune disease NOT an allergy!)

Anyway...

DS1 (age 4) has had a postive blood test for coeliac, and we are waiting for an appointment for endoscopy/biopsy. Now that I've read up about coeliac it seems obvious (he is anaemic, not putting on much weight, tired a lot, poor appetite, very fussy eater, bloated tummy and stomach pains) - so much so that I am wondering why the paediatrician has left it a year before testing him (and only did so because I pushed for further investigations)

Anyway, again...

I just wanted to hear anyone else's stories about coeliac kids. And in particular, to know if there is anything I should be pushing for medically for DS, or any questions I should be asking.

Also, I have a DS2 (age 2) and a DD (7 months). Should I be pushing to have them tested too? No sign of problems with them (though DD is only just weaning so won't have had much gluten yet).

Many thanks to anyone who replies.

welcome to the club KTKT :)

My dds consultant has said we shouldn't put her through a biopsy (she has bowel symptoms etc and dp is formally diagnosed coeliac) we should just go straight to gluten free trial. He referred us to the paed dietitian who agreed. As we are in Surrey where next to nothing is on prescription anymore we won't lose out there but I can't help but feel we are not helping her future by not getting a "firm" diagnosis. Mind you it feels odd to want her to have to have an invasive procedure IFYSWIHM. Anyway despite my misgivings we have gone ahead with starting gF diet. Her school have been brilliant and she is coping ok so far but I do feel so mean. I think it would be easier if I knew this HAD to happen.

I know what u mean, but because the 'cure' was diet based rather than drugs based we didn't feel the need to doubly confirm what the bloods had already confirmed... If she hadn't responded so well to the diet, then we might have been convinced to do further investigations, but she is like a different child! :)

According to our paed and a few books I have read, when children get older it is more likely they will stay strictly on the diet if they have had a confirmed diagnosis - if not, they are more likely to 'cheat' - esp as adolescents often get their symptoms disappearing for several years (but the gluten is still doing internal damage) so they think it's probably okay.

Tricky though. We are seeing symptoms now in DS2 and are making the decision to feed him gluten so that he can have a test. Absolutely horrible thing to do.

That's an interesting theory... I wonder if there's a biopsy that can stop teenagers smoking and drinking too

Seriously tho, we took the opinion that, if she wanted to when she was older, she could take herself off the diet and have the biopsy then. But would she be likely to become a symptom-free coeliac in later life if she's so full of symptoms at this age? Does it change how it affects people like that??

ha, FSB, parents would be queuing up for the anti-smoking biopsy for their kids!

That's fair enough, re: your decision - it is an individual choice, and I think it also depends on how bad your child's symptoms are. According to the books I've read, yes, many teenagers become asymptomatic (temporarily) although the damage is still happening internally. Just something to be aware of, I guess.

Hello, my DD1 is having her biopsy tomorrow so am a bit anxious but at the same time cannot wait for the confirmation (which I hope we get) . I feel we have been in limbo the last few weeks following the blood test and am looking forward to starting her GF .

Good luck Lloydjam. We found the biopsy more upsetting for us than for DS1 - the hospital staff were brilliant with him. As you say it was a big relief getting the confirmed diagnosis and being able to go ahead with the diet.

Take lots of (gluten free) snacks for after the biopsy - DS1 was starving because of not being able to eat beforehand, and he wasn't very impressed with the rice cakes I'd brought!

Ditto what redridingwolf said. The biospy is definitely more worrying for us than them. Good luck and let us know how you get on.

HI Everyone

Just to let you know that biospy went very well despite the anaesthetist not wanting to put DD1 to sleep by gas. Luckily my daughter was very brave and with the help of the numbing cream didnt make a fuss.

I was hoping for a bit of feedback there and then but the consultant said the biopsy would have to be analysed so we have a few weeks to wait. Have decided to go GF now anyway though so have now started tonight on the GF road. Thanks to everyone for their support - Im sure I will be back here several times more over the course of the next few months ! Have also booked DD2 to be tested even though she has no symptoms at all. thank you

So glad it went well. Have to say, having seen my DD thrashing about when the gas started to take hold I wished she'd had it intravenously. Apparently it's normal for patients to thrash about as if in extreme distress when given the gas but nobody warned me and it was really upsetting (the patient is totally unaware during this process). We were told to start gf as soon as DD had the biopsy rather than waiting for the results so I think this is a good idea.

glad it went well, lloydjam. Our consultant told us at the time that it was classic coeliac, which the results a few weeks later confirmed. We went gf straight away too, though am still feeding gluten to my younger children as I am waiting to have them tested too.

Hello Everyone
Just thought I would post an update, we had DD1 biopsy result today and it is positive, so relief all round that we can now get on with the diet and hopefully put years of misery behind us. Im sure I will be back for more advice as the months go on. By the way - sainsburys GF chicken nuggets get the thumbs up , although having just done a GF shop I think we may need to take out a second mortagage !!!

Hi everyone, I am joining because my DS is about to have the blood test for coeliacs.

He suffers undiagnosed allergies and also has had increasing problems with his bowels in which with 4 movicol a day he gets constipated.

I'm interested though because I have been going through the guilt of thinking it's all because I have bowel issues (IBS) and that I have given them to him.

I was tested for Coelics (12 yrs ago!) (had all the classic symptoms) but was told straight after the endoscopy it was negative - can't remember waiting for biopsy results?

I am wondering if it's worth getting GP to check if there are biopsy results and if not ask to be tested again (bloods - which I never had) if DS is positive?

My DS hasn't even had bloods yet and chances of it being negative are 50:50 - but having been naughty and looking through DR Google I noticed Coeliacs can present with a high eosinophil count - which we already know my DS has.

Can I lurk here and hijack for advice if needed?

without 4 movicol a day!

Hi, this is all very new to me, my ds was diagnosed coeliacs last september via endoscopy/ biopsy, only 30 months old, he took really well to his new diet,he was like a different child, happy, but recently the symptoms have returned, screaming at night, miserable during the day, i'm exhausted, took him to the gp today, and was told to contact the hv for sleep routine advice, he goes to bed fine and sleeps till early hours {if i'm lucky} but wakes in agony, not in with dietician till june, but wondering if i should get in touch to ask for advice?

danielle76 I had a slightly similar experience with my DD. She was diagnosed last April, went gf and within weeks all her symptoms disappeared. However, from September her symptoms started to return (tummy aches, reflux, burping, bloating, pale etc). Her blood tests were back within normal range so we knew no gluten was sneaking in but couldn't understand why she was ill again. Eventually dietician suggested removing dairy from her diet as some coeliacs can become temporarily intolerant to dairy while the gut is healing but this made no difference. She then suggested trying the 'super sensitive' coeliac diet which meant cutting out even the 'safe' levels of gluten in things like Codex wheat starch (found in a number of gf prescription products) and all barley malt (even 'safe' amounts). This seems to have finally made a difference although it did take a while. I recommend getting in touch with both the dietician and consultant to explain the situation and maybe asking for repeat blood tests to check Ttg levels are back within normal range.

thank you so much for the advice, i really am struggling at the moment, so upset,
because he was getting better, He had bloods done in december, and they were all in the normal range, he had lactose and dairy allergy tests and they were clear, so maybe this is the answer, thank you

My ds is a super sensitive coeliac we avoid maltrodextrin as well as this really upsets him .....

Hi Danielle, sorry to hear you're having issues... Our dd seems to be super sensitive so we avoid all wheat/gluten products, although we're still getting the hang of it (4 months since diagnosis) and she gets glutoned on a semi regular basis
It's amazing how the symptoms come back so quickly and stronger than before. The bloody nursery gave her half a quorn sausage this afternoon (the most gluten she's had since we went GF by a long way) and she threw up twice... Poor little thing - you'd think she could rely on grown ups not to poison her!