Any coeliacs or HCPs about?

[MrsKCastle]

I'm hoping that someone can help me to make sense of my daughter's blood test results.

She has been having I'm going issues with loose stools, nausea, tiredness, occasional vomiting.

Was sent for a range of blood tests and apparently everything came back normal, except the coeliac one which says 'transgluataminase IgA level >128 u/ml.

It looks as though that is coming up as positive for coeliacs? Any chance that it could be false positive? I know the doctor will go through it, but can't see them until 7th Jan.

(I know she will likely need biopsy to confirm, just looking at likelihood).

[JammyGeorge]

That's a shame about the helpline.

Once you are a member they have an app you can pop on your phone and scan your shopping and it gives you a smiley face if it's GF. I don't use it now as I label read but it was helpful at first.

When DS was diagnosed we had to go GF immediately due to how sick he was, I know waiting must be awful but at least you can research and prepare yourselves for what might be coming. I'm the kind of person that can handle anything as long as I've had a good nights sleep and time to think and plan.

Coeliac is a pain in the arse and is there in your face everyday but you do have some control over it. People with ibs, colitis etc have flare ups and are ill and have little control sometimes. With coeliac you stick to the diet your DC will flourish.

I'm not sure on the exact stats (coeliac uk may have them) but I think false positives from the blood tests are quite rare. I think it's 90% or 95%+ of people with a positive blood test are positive at biopsy. Let's hope your DC are one of the lucky ones.

[cestlavielife]

The good thing with coeliac diagnosis is that within a few months you will see amazing changes on gf diet. My dd was diagnosed age 4 and it took 18 months to get a clear blood test but physical and behaviour changes within 3 months of gf diet. It is a change But there is lots available.

[flissypix]

With my youngest daughter who is now 9 she was about 16mths at the time we took her to the GP who told me to put her on a gluten free diet whilst we waited for a paediatric appointment. The difference in her was almost instant she went from a poorly, weak,constantly crying underweight to totally thriving.
When we got to the consultant 4 months later he told me that the GP was wrong to tell me to elimate gluten and for me to put her back on it for 6-8weeks for her to be tested.( The junior doctor who did the main consultation also repeatedly asked me what Gluten was and why I was so concerned 🙄 )
I put dd back on gluten she became violently ill again rash all over her body and purple bags under her eyes. I called the consultant and explained that I wasn’t putting dd through anymore she was so ill. He agreed and said that he would give a diagnosis of childhood coeliac disease from the blood tests alone but that when she got older she would need to be tested again.
Every year we say we are going to try and re introduce gluten but she gets sick after just a tiny bit that we just stop again. She was also dairy intolerant for about a year but we managed to re introduce that slowly and it’s never been a problem since.

[MrsKCastle]

Well we've been to see the GP but need to carry on with the waiting... GP is referring us to a paediatric gastronenterologist? which means DD1 has to carry on with eating gluten. I'd love to take her off it and go GF but I know she's not nearly as bad as some of you have seen with your DCs, so I'll make sure we do it all properly. My worry is that there will be more waiting once we see the specialist... How long until we can start getting her well again?

[JammyGeorge]

Hi, I'm not sure on the wait but a paediatric gastro is who diagnosed DS and does his annual reviews so it sounds right.

If they choose to do an endoscopy you need to have been eating gluten for 6 weeks I believe to make sure you don't get a false negative as the gut can heal when you are not on gluten.

If they diagnose without the camera down and they can go GF straight after the appointment you'll see results quickly.

DS's bowels (sorry TMI) took 2-3 days to calm down, it was a rocky 4/6 weeks ish after that, couple of months down the line he'd put on weight, his hair was thicker, skin glowing etc and lots of behaviour and concentration improvement.

Some people advocate GF diets for ADHD and other issues, I do think it can make a difference in lots of areas you wouldn't think.

You could ring the coeliac uk number or join 'coeliacs in the UK' or one of the children with coeliac Facebook groups. There will be people on there that can give you rough ideas of timescales and what might happen next or you could search the group for diagnosis or timescales etc to find previous posts. There are often posts from people in your position.

Double check the groups are UK based as there are a few US groups and check they are closed groups if you'd prefer that (most of them are). There are also local coeliac FB groups so you might find people in your area.

[Nsbgsyebebdnd]

Have you seen these paediatric diagnosis guidelines? www.coeliac.org.uk/document-library/122-bspghan/bspghan-guidelines-for-diagnosis-of-coeliac-disease-in-children.pdf
The test rarely has false positives. Being diagnosed made me so much better.

[justilou1]

Hi there... Please make sure you don’t change her diet until she has had her biopsy, or you will get a negative result. It sounds like she does have Coeliac disease, and it is important for the doctors to evaluate the extent of the damage as well. Assuming that this is going to come through with a positive result, the change in diet will make her feel better very quickly. There is so much more information available and so many more foods. Labelling is much clearer than it used to be as well.... HOWEVER - since it has become “trendy” to ask for gluten-free foods, some (but definitely not all) restaurants and cafes don’t take it as seriously as they should. Eating out can be an issue. Coeliacs should have their own dedicated toaster and chopping boards, etc. to avoid contamination. Sometimes chefs “forget” and use regular soy sauce instead of gluten-free (and that causes a whole world of pain).

[MrsKCastle]

Thanks everyone. I will check out FB groups. I have been slowly getting DD1 used to the idea that she will probably have to go GF at some point... she is not very impressed but we have tried a few GF treats and so on. She will have plenty of gluten to allow for a clear diagnosis though. I'm having some blood tests for myself, including coeliacs so will see what that shows, and have also made an appointment for DD2 who is constantly complaining of stomach aches at the moment!

[justilou1]

One more thing.... probably best to avoid fb groups outside of your own country. Some countries are more dramatic about it than others, etc and can make a bigger deal than necessary. Also refer to specific products you probably wouldn’t be able to get, etc....

[MrsKCastle]

Ok, will bear that in mind. I have been looking at the reddit sub r/celiac and 'dramatic' seems appropriate there!

[MrsKCastle]

I'm back... everybody here has been so helpful! This may be a really silly question, but would there be any benefit to cutting down on gluten, so that DD eats less but still enough to get positive results on tests? Would it make her feel a little better/less tired or does it just not work like that?

We have had the referral letter through and the first available appointment is in 48 days. That's to see the consultant, then presumably another wait for biopsy or blood tests. She is exhausted. DH and I are clutching at straws to see if there's anything we can do to help her.

[Natsku]

How much do you think she is eating it now? She really needs to be eating it in more than one meal a day so sandwich at lunch and toast at breakfast or pasta at dinner or biscuits for a snack should do. 48 days does seem like a long time to wait but you'll get there eventually, maybe keep phoning to ask if there's cancellations so you can get in sooner?

DD was diagnosed when she was 4 (I have coeliac disease too and so did her dad so poor kid was doomed!)

[indyandlara]

Hearing these stories make me so glad to live where we do as the protocol is so different. My daughter was identified by our gp as being likely to be coeliac. Her bloods were tested at the Sick Kids in Edinburgh the next day (gp referral clinic). My own gp called 10 days later to let us know that her results were positive and to expect the consultant to call us within a few days as he’d already know about our daughter. The system in the Lothian’s is that all positive paediatric positive results are immediately flagged up to the consultant. He called me at home 2 hours later!
She didn’t have a biopsy. Her levels were over 200. The protocol is that there is no need to biopsy when levels are 10 times over a positive so over 50. I hope that at your appointment you find you don’t need the biopsy for diagnosis.

I was expected to test positive for Coeliac Disease. I have had IBS for 20 years and my family history is littered with gastro complications. I have many of the symptoms. My levels were 3.8 and I’m not coeliac. It shocked us all

Facebook groups are helpful. I’d echo sticking to UK ones though. If you’re ever visiting Scotland look for Scottish Coeliacs on FB. It’s a friendly group and there’s recommendations for places to eat all over the country.

[JammyGeorge]

Hey Mrskcastle, I was told by the docs that ds1 should have a least 2 slices of toast a day or the equivalent? until he had the biopsy (he didn't end up making it though). How accurate that advice is I don't know it was from the paediatrician on duty when he was discharged from hospital rather than his gastro specialist.

When I was arranging blood tests for ds2 I talked to the GP and explained that we were GF at home at the mo but he was eating gluten cereal for breakfast and a school dinner. The GP thought that was enough.

Let's hope once you've got your appointment they sort out the diagnosis quickly the Scottish system seems so much more sensible but I suppose once you've got that biopsy you know for absolute certain.

[MrsKCastle]

Indyandlara I wish it was like that here. Dd's initial doctor's appointment was at the end of November and I can't see us getting a firm diagnosis until at least Easter. I will definitely try calling to ask about cancellations. At the moment, she has wheat based cereal daily, plus pasta or bread and the odd cake, biscuit etc. I'm sure she's eating more than enough for the diagnosis.

In the meantime, my tests have come back showing low calcium and low vitamin b12 (no word on the coeliac yet) and DD2 is complaining of stomach aches every day, but we can't get her blood tests done for another 10 days or so because she needs a hospital appointment to do them.

I

[Natsku]

Oh that is such a long wait :( Fingers crossed you get a cancellation

I got my blood results in the UK at the beginning of a summer and I was moving abroad at the end of the summer so the GP told me there's no point referring me and I'd have to ask for the gastroscopy abroad where it was quite different, asked beginning of September, had it a month later.

[onemouseplace]

That's annoying about the wait for the gastro appointment. DS was diagnosed coeliac a couple of months ago - the initial bloods that cam back showed he was severely anaemic and the GP put him straight on iron and folic acid supplements.

Then the coeliac results came back and all she said at the time was they were high (when I saw the consultant they were just over 70 which I think is the cut off) and she advised him to come off gluten straight away and to tell the paediatric gastroenterologist that is what she advised. We saw the gastro a couple of months later and as DS was just over the cut off he didn't need a biopsy to confirm and we've been carrying on from there.

The difference in him is astounding though (although much of this will be from building up his iron stores again) - he has so much more energy already and I'm so pleased our GP said to go GF straight away as I feel it's given him an extra couple of months to get better.

[MrsKCastle]

Thanks onemouse. That gives me hope that DD1 will bounce back once we get her on GF. I looked at the NHS referrals website this morning and lo and behold there was a cancelled appointment for next week, which was such a relief! So only a few more days to wait now.

In the meantime, DD2 has gone from constant stomach aches to some nasty vomiting attacks. The first was a week ago, then ago yesterday and today, so doesn't seem like a bug... It looks more and more likely that she has CD too. Blood tests for her on Wednesday. The amount of medical appointments that we 're having to keep track of is getting quite ridiculous!