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.

coming back again lloyd - my post last night was rather brief as I had two children in the bed with me and one woke up while I was typing...

just to say that i see that you haven't seen the consultant yet. when you see them next week, make sure you tell them about DD's current diet. I expect that they will explain to you that the biopsy requires your DD to have been eating gluten in 'normal' quantities for at least six weeks before the procedure. otherwise the damage caused by gluten may not be visible and you will get a negative diagnosis - and you don't want to put your DD through the procedure unnecessarily.

if i were you i'd ask them for a referral to a dietician to help you manage the gluten challenge (that's what they call reintroducing gluten after being gluten-free) as it may make your DD feel very unwell. it is probably worth it though to get the final diagnosis.

we are off for DS's biopsy this morning. will let you know what it is like.

Hello again sorry had to dash off last night. Firstly have to say how angry it makes me to hear yet another story of doctors not taking us mums seriously when we know something is wrong. Why does it have to be such a fight to get the right diagnosis and medical help for our children?! Sorry, rant over.

My DD1 (now 10) was diagnosed last year and I can assure you that biopsy was fine. We were told that given her blood test results (very high) it was extremely unlikely that the biopsy would come back negative and they were 99% certain she was coeliac but they still have to do the biopsy anyway. The worst bit was having to keep her on gluten for 6 weeks while waiting for the biopsy but worth it in the long run. She has taken to the gluten free diet amazingly well considering her favourite foods are bread and cake! She did get very upset when we first told her they thought she was coeliac and explained what that meant but she soon got over it when I assured her I would find gf alternatives for all her favourites plus she could still have chocolate! I would strongly recommend having a look at coeliac uk's website and joining up once you've got the diagnosis - you get lots of free goodies to try plus the all important food & drink directory (known as the coeliac bible). Good luck and let us know how you get on.

PS Redridingwolf hope it went well today

thank you freefrom. yes, biopsy went well today (though i did shed a tear when DS was asleep on the table, looking all small and vulnerable). he was a bit tired and grumpy when he came round (plus incredibly hungry after fasting half the day) but perked up when he got home and is now happily asleep (without anaesthetic!)

we have to wait a few weeks for biopsy result, but it is pretty certain anyway - the (very experienced) doctor said that his gut was 'classically coeliac' and send the dietician down to see us, who put us straight on prescription for gf foods.

so, it's good to have that over with, and now we can just concentrate on getting the gf implemented.

Yay for being able to go gluten free! Glad it went OK.

thank you! want to fast forward a few weeks now to when we are in the swing of it, and can see the benefits for DS, feeling a bit of a hurdle now (but i know we will get there...)

redridingwolf - im glad the biopsy went well for your ds. Id like to say im so glad i have started receiving advice here as I havent started my DD on gf yet (and may have done so !!) . I wouldnt have known otherwise ! We see the consultant next week so hopefully can get the biospsy done asap. I have a question for freefrommum - does your DD1 have to have regular (monthly/yearly?) check ups at the hospital and will they have to do so for life? Im not sure what the standard of care is once diagnosed.

Sorry so many questions ! I guess I still cant relax until we get the biopsy result back .

thanks !

My DS (9) has a yearly appointment for height /weight any questions etc ....

The dietician wasn't much good tbh - I told her more stuff so we agreed that I will ring her if we get stuck !

My ds got diagnosed 2.5 years ago and it took a couple of weeks for the dark eyes to go but now has filled out and looks healthy.

He does not Like the gf bread or cereals so. Tends to have meat or cheese for breakfast.

My DD was only diagnosed last April and we had a follow up appt in August then told she didn't need to be seen again until next April. I assume it will be annually from now on but haven't really thought if this will be for life or just for a few years. Our dietician is very good and arranged a meeting with the school canteen staff to discuss gf meals for DD. I can also ring the dietician if I have any queries. Coeliac UK have a really good helpline too and also respond to questions on their facebook page.

Hi I hope it is OK to post here, my DC aren't actually diagnosed with Coeliac, but I have been as well as another family member, and am wondering if DS3 is. He is severely fussy and quite irritable and also very pale and often bloated. He has reflux which was very severe the first 2 years (he stopped breathing and choked all the time as well as screamed 24/7). He is, though, full of energy so maybe he is OK. I have another child with quite severe excema and, as I had that before being diagnosed, questioned whether he would need the blood TTG test but the doctor dismissed it as he had no 'bowel problems.' I have had 2 of my 5DC tested as they were having bloods drawn anyway for other things, they were both negative. I don't want them to have it so long (if they do have it) that they get bone damage like I have.

Hello jellybeans - welcome to the thread. I think your doctor was wrong to dismiss it. My DS had no bowel problems either but was exactly as you describe (fussy, irritable, very pale and bloated). Our original paed didn't even consider coeliac, but fortunately we got transferred to another one who did. DS's blood test was positive. When we were referred to the specialist, she looked at his symptoms and him and said it was classic coeliac (which the biopsy then proved).

That's a longwinded way of saying you don't always have bowel problems. In fact some children even have negative blood tests but then positive biopsies. Another MNer has a coeliac child who had no symptoms whatsoever (other than a sibling with coeliac), but the biopsy showed severe internal damage.

And, by the way, the NICE guidelines here which all NHS doctors should follow say that coeliac tests should be offered to anyone who has a first degree relative with coeliac. Since you have coeliac, your DS would qualify under that. I would print it out and take it to the doctor - if he refuses, then see another doctor. My GP referred the rest of our family for testing after DS was diagnosed without a murmur, though none of us had any symptoms at all. (DH and I both negative, don't know about other DCs yet).

Definitely worth testing. My DS is so much better after being gluten-free for less than a week that I can't believe it. Best to have the diagnosis first though if you can, as they can't do the test if you're not eating gluten.

Hi jellybeans I totally agree with redridingwolf, it's very common not to have 'bowel' symptoms (although I would argue that bloating is a bowel symptom) and as you are coeliac you have the right to get your children tested. Don't take no for an answer!

My DS was tall and skinny - though had the dark eyes but had loads of energy but had constant diahorrea - running down his legs, the doctors dismissed coeliac for him as he was normal height/weight - they only tested because I really threw my toys out and told them they had to do something ! They never expected coeliac and never did a blood test till they did the biospy and he was out. I was convinced it was food related they tried telling me he was doing it on purpose/had fast bowel transit. I would go back and back till they do something !

'they tried telling me he was doing it on purpose'

that is appalling, notapizza

Thanks so much for the welcome and good advice :) Really appreciate it. I feel stronger now to insist on a test for DC. I will look up and print the NICE guidelines and see what they say. Some doctors have no clue do they, the one who diagnosed me after the blood test told me to go gluten free right away (before biopsy) yet luckily my fellow coeliac relative stressed to carry on with gluten until after the biopsy-otherwise it would have maybe been negative! I have long term problems now as it was undiagnosed for years, they fobbed me off even though i was anaemic for ten years! I had multiple miscarriages which who knows could have been due to the coeliac in part. Anyway thanks again and I will pop back on the thread when i find out about DC :)

So sorry about the long term problems jelly. it sounds as if miscarriages are an undiagnosed coeliac problem. It's so wrong that coeliac is still not being picked up by doctors when the guidelines are very clear. Let us know what happens with your DC.

GRRR!!! Stories like this drive me crazy! Coeliac disease is a relatively common condition these days with an estimated 1 in every 100 people suffering from it, many without realising. My DD never had any of the so-called 'classic' coeliac symptoms, ie she never had diarrohea or constipation, never had any problems with her weight/height or appetite (quite the reverse - as a baby she was HUGE!) and was in fact the most healthy child I knew until just over a year ago when she started getting tummy pains. The only other symptom she had was some acid reflux. I now realise how lucky we were to get her diagnosed so quickly and it was by accident really as neither we nor her GP had considered coeliac disease, it was picked up by a blood test at the hospital because they thought she was anaemic. Most people still don't get diagnosed until at least their 30s when a lot of damage may already have been done. So sorry to hear of your problems jelly and yes, it is quite likely that the miscarriages were linked to the undiagnosed coeliac disease, how awful. Mind you, I see you went on to have 5 children so a happy ending after all that heartache.

Hello, just to echo that my DD1 also had no problems with diarrhoea or with her bowels (in fact was slightly constipated if anything). We are waiting for the biopsy now following from the positive blood test last week. I am still in the "enraged" phase (waking up in the night absolutely furious with the way my daughter has been treated). I just wish I had been more assertive and demanded this test before. As it happens I am so cross that my DD has been taking propanalol (for "abdominal migraine") for years for nothing. The scary thng is that my consutant said the next stage was to treat her with anti-epileptics if she wasnt better !! so Im glad we finally know. Im hoping that my anger will go but at the moment its taking over my life ! Any advice or shall I just take up boxing ??

No advice sorry on that one lloydjam, still trying to get rid of the anger myself. Had a terrible time trying to get my DS's allergies diagnosed when he was a baby, 4 years later and I'm still angry plus now I'm also angry about the way my DD was treated at last visit to consultant. Maybe boxing's the way to go...

Perhaps we should all meet up and hit something !!! I actually phoned the consultant 4 weeks later as I'd not heard anything about the tests, then went out. Wecame home to an answerphone message : (word for word)

"Hello, this is Dr XXXX here, I've checked the blood tests and they are showing positive for coeliac disease and the bowel does too, so XXXX is coeliac. The dietician will be in touch shortly"

Thats it !! It was over 2 years ago and I still have the message - I wont delete it off the ansaphone ......

Yes, throwaway words that have no bearing on the pain and misery you and you child have gone through in the past years ! I used to drag my daughter off to school and and tell her to get on with it as I didnt know what was making her ill and was frustrated that time after time she was having more time off school - what a bad mother I was !! I cant believe it now. To start doubting your own children is a terrible thing.

You are not a bad mother, lloydjam - it is so hard to know what is going on. I feel bad about the times I tried to get my DS to walk instead of riding in the buggy, when he would say he was tired. You got your DD the diagnosis, and the rest of her life will be easier because of it.

I think that there is an extreme failure in the way the health service deals with coeliac. Given that the first test is a straightforward blood test, it should be offered more readily. The NICE guidelines are very clear, but doctors are not following them.

This is one of the scariest things about parenthood, all the stories of illnesses/chronic conditions that get missed by the 'healthcare professionals'!!

Luckily, I was enough of a trouble-maker/ DD was severe enough for us to get her diagnosed at 27 months old... DH's cousin has just been diagnosed aged 29 after years of pain and digestive problems. Like someone else here said, the annoying thing is that it's not even an uncommon illness... If it was 'so-and-so's syndrome' which was incredibly rare, then the lack of testing would be excusable, but it's getting more and more common.

Grrr !!!

Yes, apparently 1 in 100 people are coeliac but only 10% - 15% are diagnosed. Everyone with a first degree relative (parent, child, sibling) who is coeliac should be tested.

Hello
I'm new to the whole Coeliac scenario - my DD was diagosed on Saturday, however just to say Warburtons produce a Gluten and wheat free bread which is honestly delicious - even my reticent husband is now eating it!

Hi KTKT, I wonder if that's the Warburton's bread we get? We get the sliced brown gluten-free - it seems to be very like ordinary bread and makes good children's sandwiches.

How old is your DD?