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Young DD to have gut biopsy for coeliac

(18 Posts)
Lizawithaz Fri 16-Oct-15 21:33:54

Does anyone have experience of their young DC having a gut biopsy for coeliac?

My DD is 6 years old and being investigated due to blood tests suggesting she has the genetic markers for coeliac, plus she isn't growing very well and is small for her age. My understanding is that coeliac disease in children can cause 'failure to thrive'. Her gut biopsy will be at Great Ormond Street and she will be fully sedated.

I'd be keen to hear from other parents whose children have gone through this. How long did your child take to recover from the biopsy? What did the results show?

TIA

emummy Fri 16-Oct-15 21:48:39

Dd2 was 8 when she had this. She had a general an aesthetic for the biopsy. Afterwards she had a sore throat but the nurses were ready for this and brought cold drinks and ice cream. She then ate toast and cereal as she was starving! Everywhere will be different I guess but the dietician phoned us with the result in less than a week and we went in the following week to discuss it all fully with the dietician and the gastroenterologist. Her results showed coeliac, so they gave us lots of info about that, including leaflets just for her which she liked.
Since then she has been fine on the diet, and grew 12 cm in the first year!
Good luck to your dd, hope all goes well

Lizawithaz Fri 16-Oct-15 22:08:23

Thank you emummy, really appreciate your response.

ErnesttheBavarian Fri 16-Oct-15 22:30:50

Hi. No experience with child having it, only personal experience. I had to drink this disgusting liquid which made me erm clear out my intestines. I basically had medically induced raging diarrhoea the night before and morning of the procedure. I can honestly say that was the worst part of it. The actual procedure (not done under ga in my case but I was sedated) was a doddle and I didn't feel any discomfort at all afterwards.

I would like to ask - you say tour dd is having this done due to blood tests showing genetic markers. Would you mind telling me more about this? My ds us very small and is not growing well. He has been tested a few times for the antibodies, and the tests always came back negative so coeliac disease has been ruled out. I'd be iterated if there is something else I should know as we go for his analysis check up in a couple of weeks.

Good luck. Like I said, for me the procedure was fine. It was the run up that was horrid.

Lizawithaz Sat 17-Oct-15 12:36:14

Hi Ernest,

I will double check my daughters medical notes to see what they said and will get back to you. How much smaller is your DC compared to their peers? My daughter just about comes up to the shoulders of children her own age. She also has an underactive thyroid and takes levothyroxine. She is noticeable much smaller than her peers. Perhaps you could ask for an appointment with an endocrinologist to see if your DC has a growth hormone issue?

ErnesttheBavarian Sat 17-Oct-15 18:01:47

Thanks Lizawithaz. We've been seeing an endochrinologist since he was 5, so for the last 7 years. They have not found a reason for his poor growth. They considered coeliac disease right at the start. At this point I had never even heard of it. Weirdly enough, 2.5 years ago I was then diagnosed with it. But while my levels measured <900 when I was diagnosed (by blood glia din levels, before the biopsy confirmation ) , his have always been negative. The only thing they've found wrong with him is a deficiency in vitamin d, for which he has taken supplements for over a year. He has had hand bone x-rays which show he has the bone size and structure consistent with an 8 year old (he is almost 12). He wears age 8-9 clothes and is by far the smallest in the class despite being one of the oldest.

If your dd has to take that medicine that makes her poop like a poop machine, I strongly recommend smothering her bum before and during the process in a thick protective layer of nappy cream. Ouch.

Schrodingersmum Sat 17-Oct-15 18:32:29

Ernest have you ever heard the phrase walks like a duck, qwacks like a duck probably a duck?

Vit D deficiency is a classic coeliac deficiency, you are coeliac and you have a child with symptoms that could indicate they are too
My own tests were negative for over 40 years and by the end I was almost dead because they kept saying it cant be coeliac disease
It was infact I am a very bad coeliac but I have a faulty immune system so dont express antibodies
You cant harm your son by putting him on a gf diet but you may save him if he is the 1 in 9 that get missed
When my 2 children then went gf they put on a mega growth spurt in 2 months but it still took another 4 years to get them both diagnosed
You have nothing to lose by trying and much to gain

Lizawithaz Sat 17-Oct-15 20:15:56

As shroed says, coeliac disease can run in families. Maybe Ernest you should contact Ceoliac uK for advice? Might be worth putting your son on a gluten free diet to see if that makes a difference. I will message you when I've managed to find my daughters hospital letters.

Lizawithaz Sun 18-Oct-15 22:15:48

Hi Ernest, I just checked my daughters notes. She has iGA deficiency which is possibly giving false negative results for coeliac disease, hence their recommendation to do a biopsy to be sure. If she is found not to have coeliac, then her Endo has recommended growth hormone therapy to give her a bit of a growth spurt. Other than being small, does your son have any other symptoms? Does he have upset tummy, bloated ness, tiredness etc?

Hassled Sun 18-Oct-15 22:22:05

My much older DS (teenage) had the endoscopy last year - and without sedation, because he wanted to go to a football match later hmm. No preparation other than an empty stomach and it was very quick, really. A sore throat later but otherwise fine (and yes, it just confirmed the Coeliac that the blood tests had thrown up).

And Ernest - agree entirely with Schrodinger. A GF diet will do no harm and may do significant good.

Lizawithaz Sun 18-Oct-15 23:28:48

Thank you Hassled.

notapizzaeater Sun 18-Oct-15 23:32:45

Son then 7 was sedated and had the tests. We had to chase for results a month later. He also grew 12 cm and 2 shoes sizes in the first year.

Lizawithaz Sun 18-Oct-15 23:40:35

Thank you notapizzaeater!

ErnesttheBavarian Mon 19-Oct-15 09:44:44

No, he doesn't seem to have any bloating/stomach pain symptoms. I had bloating (didn't realise, just kept beating myself up thinking I looked like a fat pig) but didn't have upset stomach or pain or anything.

He has had 2 years of ght. He did grow on that, but not loads, and his growth stopped as soon as the med did. Only possible for 2 years. I don't know if his school would provide gf food without doctors note, and not sure dh would agree. Still, plenty to think about. I'll make sure I discuss in detail with his endocrinologist in a fortnight.

Good luck Liz and thinks to all for ideas. And schrodingersmum, yes. Have oft wondered if it is a duck! Hope the cat's ok.

notapizzaeater Mon 19-Oct-15 13:49:18

Our school wouldn't feed him gf till we got a doctors letter, since then he's thrived, so much so I'm now having to cut him back :-(

Schrodingersmum Mon 19-Oct-15 15:14:58

Both junior schrodingers have gf packed lunch as we are all veggies too, school catering only seems to cope with veggie or coeliac not both but their health is so much improved that I am just happy to make them anything

Ask hubby to humour you? We saw a double growth spurt in 2 months with both children and research shows that children switched to gf before the age of 9 regain most lost growth

multivac Sun 25-Oct-15 18:55:45

Our son had an endoscopy at GOSH, but no biopsy. He was sedated, and apart from coming round absolutely livid - and trying to beat up his father - he had no after effects at all, and was home and happy that evening. This was just before he turned four. The results showed 'total villous atrophy', confirming the positive blood test he'd had earlier. We took him off gluten, and it was like flicking a switch. It felt almost magical.

tinkerbellvspredator Tue 24-Nov-15 13:09:52

Liza hope you've had the biopsy and it all went okay, if not we had one recently and it went fine. DD is 5 she was aware it was going to happen at some point but we didn't tell her until 2 days before that the date was set so she wouldn't worry. We didn't talk about it much, just that we go into hospital and they'd take a look at her tummy with a camera while she was sleeping. We answered questions about why she'd be sleeping by saying the camera would be tickly so if she was awake she'd wriggle about too much. Promised she could have lots of ice cream after.

We went in, no food that morning which was okay she's not a big breakfast eater anyway, played with toys in the children's ward, watched some Dvds . Got a bit tedious as child being seen before her had a longer procedure - in the end we were there about 4 hours before she went down.

Canula in hand was fine, she was distracted with a book by the nurse and anaesthetist. Went to sleep, we were called back up about 45 minutes later she was coming round. Dopey but okay. An hour later we could go , but there was a bad point where her throat was very sore and they had to take the cannula out she was crying. Had some ibuprofen and once it kicked in she was fine. Sore throat for rest of day and back to normal next day.

She enjoyed eating her ice cream at home over 2 days (note we were asked to take in gluten free food for her). We bought a not too big tub (haagen daaz size) so she could eat it all...

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