Finally had DS paediatrician appt and....

[wangle99]

we have a preliminary diagnoses for coeliac disease.

The doctor was fantastic and I really liked him.

Went through DS history (from birth) up to now including the 'test' we had done at the Health Food shop and he said he is so convinced that is what it is.

He took bloods today which we are waiting for results of and then he will go in for a stomach biopsy in September (which I am petrified about ).

Although I am relieved we've finally been believed I'm worried that nothing will show up and we won't know what is wrong!

Am also livid as paed said 'we could have sorted this years ago' Well I would have done if I could have got a doctor in our surgery to believe me grrrr

Thanks for all of the advice...

[catesmum]

Don't worry about the biopsy..it sounds scary but it's okay. If it's just an endoscopy (which it probably will be for suspected coeliacs) your ds will be lightly sedated and you'll probably be able to stay with him for the procedure. It will probably just be a day case as well.

[Nat1H]

Just remember not to try to cut out gluten yet! If you do, then the biopsy may well not show anything up.
Can I ask what your DS symptoms are? I have coeliac disease and often worry about my DC's. What should I be looking out for? (may sound stupid, but I can't remember my symptoms very well)
Thanks

[wangle99]

Oh don't worry we aren't cutting out gluten yet! We have already done for a month and DS has been back on gluten for 6 weeks so far (and I'm making sure he gets a good amount daily!).

DS's symptoms are; bloated tummy, excessive smelly wind (worse than the dog!), diarrhoea, irritability. They are the main ones.

Actually think DH has it too and possibly FIL, they are all going to be tested.

There are many different symptoms, apparently DS is typical of his age group (he's nearly 4), in young children they said irritability is a big thing and god is DH a grumpy bugger!!!

I'm just praying this is the cause and the tests come back positive otherwise we'll be back to square 1 not knowing what is causing it!

[catesmum]

just to warn you, that dd2 had all the symptoms of coeliacs disease (bloody diarrhoea, lots of weight loss, lethargic - she stopped crawling etc) she had a negative blood test result, but you do get false negatives. So, we went through a gastroscopy (an endoscopy and a colonoscopy) and they showed that she wasn't coeliacs, and had a different condition completely...but tied in with it was an intolerance to wheat

[wangle99]

TBH Catesmum I just want them to find out what is wrong with him, I have been struggling to get a paediatrician appt for all his life, he's had problems since he was born (am presuming gluten in my milk was causing an issue although don't know if this is possible).

I hope it IS coeliac then we'd know sigh I'm fed up with waiting!

[wangle99]

meant to say catesmum is your DD ok now? Did they manage to diagnose what was her problem easily after the endoscopy etc?

I really worry they won't know what is wrong with DS

[tatt]

my coeliac test was negative but I feel a lot better without gluten. I should do more elimination trials to see if its just wheat or yeast but it's so good not to feel exhausted all the time. Wangle99 even if the test proves negative if eliminating the food makes your child better go for it. The tests just help financially as you can get foods prescribed.

[catesmum]

my dd2 is now loads better - but that's due to steroids, anti-inflammatories and a restricted diet. The endoscopy and colonoscopy showed ulcers in her bowel and flat and shiny villi - but it wasn't coeliacs. Instead it's "some form of colitis, inflammatory bowel disease type thing) (according to her Great Ormond Street consultant). It did take over a year to get any form of diagnosis...they also don't know whether the food caused the condition of whether she had the condition and food aggravated it...but we had been warned when she was a baby that bowel things take a long time to diagnose, and there might never be a diagnosis.
Things do pass through your breast milk though, and I had to follow the diet whilst I was still feeding (so was soya, dairy, wheat egg and nut free).
Hope you get a diagnosis soon....once they know what treatment he needs, they tend to improve drastically and rapidly

[tkband3]

Hi wangle99

My DD1 was diagnosed with coeliac in May last year, when she was 2.10. I had been trying to get someone to listen to me for over 2 years, as her problems had started at around 7 months (with hindsight, this was obviously just after I introduced gluten at 6 months)...no-one listened to me and I was dismissed as a neurotic mother, even by my MIL who used to be a health visitor and paediatric nurse . Finally, we moved house and a doctor at our new practice looked properly at my tiny, emaciated, grey-skinned little girl and noticed that she hadn't gained any weight for a year and referred us. Her blood test showed that she was 99% certain to have coeliac which was confirmed by the endoscopy. Apart from bowel problems, she used to vomit every 2-3 days, sleep 12 hours a night and up to 3 hours during the day, had no energy, was clingy and irritable.

The endoscopy was quite traumatic - but mainly for me! Both OH and I went to the hospital and OH held her on his lap whilst she was put under anaesthetic (I think it has to be done under GA for children). The procedure took about 20 mins and then she was taken to recovery. She was quite distressed when she came round, which is very common, but she was fine after about half an hour. They confirmed the diagnosis that day and we saw a dietitian who gave us a prescription which was filled quite quickly. She went on a gluten-free diet the following day and within 2 weeks was a changed child.

I was so furious that no-one listened to me, and when we finally got the diagnosis, I mainly felt vindicated - there WAS something wrong, I wasn't just a neurotic mother with a child with eating issues. It makes me extremely angry that she went through unnecessary pain because my fears were dismissed.

Anyway, I've rambled - sorry . Just wanted to let you know I share your annoyance with doctors - they know very little about coeliac and its symptoms. If you have any queries about the endoscopy, I'd be happy to help.

[wangle99]

omg tkband3 that is awful experience, I can't believe your DD was so poorly and they hadn't referred her to be checked out.

We have done the wheat/gluten free diet so we know DS is a different child on it. All that matters now is whether it is coeliac, wheat intolerance or a gluten (but not coeliac) intolerance.

Thank you for your comments on the endoscopy. I am petrified and the thought of holding DS while they put him under makes me want to cry (I am such a wimp!) but the thought of letting DH do it with me not there is just as bad!!

I am so glad your DD is doing well now, poor love it must have been a real nightmare for you.

[tkband3]

To be fair, we had twins when DD1 was 20 months old, so getting to the clinic for weighing was a bit difficult (and they wouldn't come to me - I used to live in Hackney...v. poor borough!) and so her lack of weight gain wasn't picked up till we became worried about her consistent vomiting. Then there was no point in referring us, because we were 2 weeks away from moving and we probably got seen more quickly in our new borough than we would have done in Hackney anyway.

Interestingly, OH's nephew was diagnosed with coeliac earlier this year. He has always had bowel problems (he is now 12) but it was only when he started complaining of constant stomach pain, and was so tired he couldn't go to school that they looked into it. Even then, the GP was only going to test for anaemia etc, and it was only when I was talking to MIL (his gran) that I said, well given the family history, he should be tested for coeliac as well. GPs just don't know enough about it .

For the anaesthetic, I was in the room, OH had DD on his lap and was reading her a story whilst the anaesthetist held the pipe thingy under her nose till she fell asleep. I was in bits, but I couldn't have not been in the room with her. My mum looked after the DTs so we could both be there with her.

I hope you get concrete answers v. soon.