More pre diagnosis advice please?

[roobiedoobie]

Hiya..

I posted a few weeks ago about my daughter, shes 9 and is suffering with stomach problems.

I was diagnosed coeliac at 30, my brother at 21.

Dr believes that she has coeliac disease but wants to try and sort out the gastric problems first to see if its ibs or similar before putting her through the biopsy, which is done same way for kids as adults apparently, I thought it'd be done under a general anaesthetic.

Anyway, we've made some slight improvements with the laxido powders 4 times a day, and have gone back to see Dr as requested.

He has now reduced the laxido to 2 a day and added in fybogel twice a day and buscopan 3 times a day for the really bad days.

He has also advised I put her on a non reactive diet, like bland things such as rice and chicken.

He said that he wants a strong reaction when we do the gluten challenge, but hoping the bland foods will help her symptoms while doing the powders and fybogel, in the hope that she may poop properly in the meantime..

I'm so confused.. so should I make her gluten free until she does the gluten challenge.. my instincts tell me to, hate seeing her in pain and suffering, hate seeing her refusing food she loves cause shes starting to see her own triggers for her tummy problems..

Any advice welcome

[Penel]

Hi RB

I've read your post through several times but I'm stil a bit confused.

Is 'the gluten challenge' a reference to the biopsy or a separate event?

If your daughter is going for a biopsy the recommendation is to be eating gluten for at least 6 weeks before hand. If you remove gluten from her diet now and then reintroduce it later and she is coeliac, the effect on her is likely to be even more pain than at the moment. I would be inclined to ask the doctor to get the biopsy out of the way so that you can remove gluten from her diet and see if the IBS symptoms disappear.

[roobiedoobie in reply to Penel]

Thank you for your reply.. to be honest I'm entirely confused myself.

He wants her to be on a non reactive diet for the next few weeks until we go back to see him, so he can see what help the new medication gives, then he wants her to do what he calls gluten challenge for 6 weeks before a blood test, then continue for a good biopsy result if the bloods come back positive.

She's been without gluten for 2 days and her tummy is already lost most of the bloat and has been more active and happy.. I just don't know what to do for the best.

Although I guess just not having bread could be helping loads if it does turn out to be IBS.

[Penel in reply to roobiedoobie]

If you look at the NICE guidelines, they say to check for a coeliac diagnosis before going for a diagnosis of IBS.

This link is for adults, but I can't see why it wouldn't apply to children as well.

coeliac.org.uk/healthcare-p...

[gfmum1]

Your doctor's logic is baffling! Why give her all that medication when, if she turns out to be coeliac, many of her problems could be solved by removing gluten from her diet? With such a strong family history the biopsy should be done immediately, rather than prescribing lots of medication which may not be necessary if she goes gluten free.

[roobiedoobie in reply to gfmum1]

I think it's because she had a negative blood test a few years ago, but saying that a lot of what we were eating together was gluten free, so she would have only been having a normal sandwich at lunch time and whatever grandparents gave her at weekends.. But in the last year or so the kids have not had as much gluten free stuff as it was getting expensive.

[gfmum1 in reply to roobiedoobie]

I'm sure you already know - and your doctor should too - that you can develop coeliac disease at any point in your life, even if you've previously tested negative.

Has your GP suggested the genetic blood test for coeliac? I never understand why it isn't more commonly done in the UK, as it seems to be a good indicator of the likelihood of someone being coeliac or not. Maybe worth considering having it done privately if you can afford it and the GP won't help?

[roobiedoobie in reply to gfmum1]

Didn't know there was a genetic blood test.. I was tested when I was 13ish when my brother was diagnosed and it was negative then got my own diagnosis when I was 30 and I suffered with stomach problems all my life.. Will make another appointment and see what's what.. Thank you

[gfmum1 in reply to roobiedoobie]

The blood test I had a few weeks ago (on the NHS, but I would have paid privately if necessary) was for genes dq2 & dq8. If you test positive for both, there's about a 95% chance you're coeliac. If you're negative for both, you're definitely NOT coeliac. I'm sure there's a good reason why it's not routinely done but I don't know what the reason is!

Anyway, good luck, it must be a very frustrating time for you.

[Pjt90 in reply to roobiedoobie]

Hi, my daughter has just had a endoscopy/biopsy done under general anaesthetic. After getting a negative blood test result. My husband and I were adamant that she had coeliac disease. Just had a highly positive result but consultant wanted her to have another blood test. I talked to my gp and he said if that comes back negative he will have to ask consultant what to do next. I have put her on a gluten free diet now as I don't want her to be in pain if she doesn't have to. My gp told me to give her some of my omeprazole for the secondary gastric reflux. Making my first gluten free gravy as I write 😶 I hope your daughter gets answers soon. My daughter is now almost 16 and had symptoms since she was weaned.

[roobiedoobie in reply to Pjt90]

I'm going to ask for her to be referred, my daughter has suffered with her gut since birth, she screamed for her first 6 months with colic/constipation/acid, I can't think of a time when she wasn't suffering with some sort of stomach issue.

It is very reassuring to hear that your daughter was able to have the biopsy with a general anaesthetic because that was worrying me quite a bit.

Hope your daughter starts to feel better soon xxx

[Pjt90 in reply to roobiedoobie]

Well funny you should say that my daughter cried until she was 9 months old. I didn't put it down to that after reading that baby milk was gluten free. She has been sick all her life. When she was a baby it was nothing for her to be sick 6 times a night. As she got older she went down to a couple of times and I always noticed if she had pasta for lunch I would see that come back up Undigested. It was just by chance we saw a different paediatrician and he agreed to do the biopsy. Everything on the symptoms list of coeliac disease she has. She is also having a tonsillectomy 2 weeks tomorrow. Fingers crossed for your daughter xx

[roobiedoobie in reply to Pjt90]

That is funny.. hope her tonsillectomy goes well xxx

[Footygirl]

Hi. New here awaiting diagnosis too.

My gastro has done antibody test as I have six other autoimmune disorders and has ordered a ct scan too. She said it would show more detail than a biopsy. I researched it and found an excellent report done as course work, I think, and it did show all the tell tale signs, well explained, as the 'slices' of film showed the gut.

Wonder why this has not been suggested for your child. Or dont they do them on children? Seems less invasive than biopsy.

Learning all the time but I too have read not to stop eating the usual until diagnosis confirmed. It goes against the grain, (pun accidental!), to keep poisoning myself whilst waiting for the appointment, but do see the logic. It does sound cruel to start a gf diet only to be made to eat gluten again for six weeks with all the misery that will bring.

Just my take on the topic as another waiter in purgatory for results.

Best wishes all

⚽️

[roobiedoobie in reply to Footygirl]

I'm hoping they will refer her to gastro at the next appointment, we're keeping her diet bland but she's still having bread and other gluten containing things at every meal and snack time.

I think the ct scan is an absolutely brilliant idea, I wish I could have had that instead of my biopsy.. I can still remember being told,... Stop swallowing!! Breathe through your nose!! Afterwards when the drugs were meant to have made me sleep I was wide awake, the consultant walked past and was joking with me that I'd been the naughtiest patient he'd had in a while and that he was going to note on my records that the medication didn't appear to work.

I hope you get your diagnosis soon, I struggled and rebelled against mine for a good while but in the end it's been the best thing that happened to me, it's even helped with some of the textural issues I had with food and I eat dramatically better now, not that my waistband would agree!!!!