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).

We’re currently waiting for our 17mo to have his blood test done. I’ve read this online:

• Negative: 0−3 units/mL
• Weak positive: 4−10 units/mL
• Positive: >10 units/mL

So it looks like your child is a strong positive. My mum instinct is that my sons will be similar.

Yes, my instinct was definitely expecting this result. I did a fair bit of googling of her symptoms and coeliac disease kept popping up and ticking all the boxes. It's frustrating that we have to wait so long for the next doctors appointment as I just want to get confirmation now and move on. I'm also pretty sure that I have it as well. When I was.listing all her symptoms, I get thinking 'Oh, she gets such and such - like me'.

I hope you can get quick answers for your son as well. It must be difficult with such a young child - at least DD understands what's going on and can describe her symptoms clearly.

Oh OP I know it just feels endless. How old is your DD? What are her symptoms of you don’t mind me asking?

I’m the same, I just want to know now so that we can get on with our lives. I know it sounds dramatic but we’ve done soooo many eliminations (obvisouly not gluten at present while we wait for the blood test). I keep thinking the same with my husbands symptoms, although he’s a chef and eats everything. I said to him that if DS is coeliac then we should probably get tested.

It will be a massive “I told you so” if he is ceoiliac as I think secretly some of my friends and family think I’m just over-analytical. Even my DH to some point. Don’t get me wrong if it’s negative then I’d be over the moon. But at the very least he has an issue with purer forms of wheat such as weetabix and shreddies etc.

Strong positive so won't be anything else.

It's annoying in the U.K. she will still need a biopsy for confirmation because in Europe they wouldn't bother. I believe there's some paeds in the U.K. who now agree to confirm diagnosis on blood results alone. She will need to keep eating gluten until after the biopsy if consultant says she needs one.

She will most likely need a biopsy to confirm. Once confirmed, best practice is for all 1st degree relatives to be tested. This is how by DH was diagnosed, so it is quite possible you will also get checked.

Thanks again for responding everyone.

I don't like the idea of a biopsy but I can understand that they want to make sure.

Johno85 she is 10. She has been complaining of tiredness for months. Then in the last 3 months or so feeling nauseous, runny poo and on occasion vomiting with no obvious reason. She is also pale, dark circles under her eyes and has always been small for her age.

This sounds pretty certain. My DC had similarly high levels and did not have to have a biopsy, they were diagnosed through another blood test which identifies the coeliac genes. I hope that your DC doesn’t have to go through a biopsy, it is so hard to keep feeding them gluten when you know how ill it makes them.

MrsKCastle did she have any symptoms at my son’s age? Poor little miss. I have seen a fair few things from top consultants saying that some do no feel it necessary to do a biopsy given a very strong blood result as the last poster has said.

Our Paediatrician has said they won’t biopsy to confirm a very strong celiac blood test result (my son is being checked as part of a range of checks and only 18 months so slightly different).

ElyEly sorry to hear you’re going through this too. We’re at a very similar stage; I’ve got a 17mo. What are your child’s symptoms?

Agree about checking relatives. I need to get tested as does dh. Coeliac is a genetic thing, dd must have the genes for it as she has it so either one of us or both of us have passed the genes on to her. It's possible to be a silent coeliac, I will be very annoyed if I am!

Yes, we'll definitely get checked. I'm 99% certain that I will get a positive diagnosis eventually... So many symptoms that I've just been putting down to poor diet/stressed/not enough exercise etc.

Had a conversation with my sister about it all and apparently she's been thinking for ages that she has mild IBS or something but hasn't been to the doctors yet... Can see this having a bit of a ripple effect with my family.

Johno85 you were asking about early symptoms. I didn't really notice anything when my two were little, but both daughters have always been small and slim.

@Johno85 my son had problems with weight (quite underweight compared to height) and quite a few gastro problems (wind, bloating, diarrhoea, constipation etc). I hope you get some help and answers.

Ely that sounds really similar to my son. Born on 50th now 25th and 2nd for height. But happy otherwise. All the best to you too.

How's everyone doing? I'm finding it hard playing the waiting game and just want instant answers. My younger daughter has been suffering with constipation recently and complaining of stomach aches, so now I'm wondering if there's a connection there... then I tell myself that I'm overthinking and it will probably turn our that none of us has coeliacs, I'm just jumping to conclusions.

Well I'd certainly set the ball rolling with your youngest and get blood tests done for her as well. Then if she needs to get put on a waiting list for an endoscopy it's done. Because it certainly sounds like your other dd will get a positive diagnosis.....have they given you an idea of timescale for her endoscopy?

We've realised over the last few days that dd is also lactose intolerant. Her consultant warned us she might be, said it's not uncommon as a temp thing with newly diagnosed coeliacs while their gut heals. She had some gf pasta with cheese yesterday and threw it up, did the same with homemade gf pizza the other week.

So total nightmare having a vegetarian, lactose intolerant coeliac! Managed to get a gf vegan pizza in pizza express for her lunch today when out, but we went to m&s food hall to get food for dinner and couldn't find a single pudding/dessert which she could have.

That sounds hard going Nico, having to cut out gluten, lactose and being vegetarian as well! I'm also vegetarian, although DH and my daughters are not. I was wondering if we'll need to cut out lactose for a while, as I heard that a lot of coeliacs are intolerant, especially at first. Did you speak to a dietician when you first got your dd's diagnosis?

We haven't yet seen the GP to discuss next steps, so at the moment I'm just going on the test result and what I've read online.

Dd was diagnosed when an inpatient in hospital as collapsed while waiting for endoscopy as she was so poorly. She saw a dietician while she was there but I wasn't there so not really sure what was said.

Hopefully your GP has already referrred your dd for a consultant appt? You may find when you have your appt on the 7th that they've already done this. When dd was referred to see a consultant we were told waiting list was 3-4 months.

I rang round everywhere within a 50 mile radius going straight to all the gastro secretaries to see if anyone had a shorter waiting list and they didn't.

And that was just for the initial appt, then she would have had to wait for an endoscopy.

She was vomiting several times a day and losing so much weight. I remember saying to one secretary that I genuinely didn't think dd would be alive by the time she was seen and they said the only thing they could say is to ask the gp for an emergency referral but even that would take 8 weeks!

When she collapsed it was quite scary and she was very poorly. She was on IV fluids for days inc potassium and her bloods showed that she was chronically malnourished. But silver lining was that I guess she skipped the queue! But I feel sorry for people waiting so long for appts.

Hi, my ds1 is 8 now and has a similar tale to nico's DC. He was diagnosed from blood tests during a coeliac crisis where his weight plummeted and he was suffering from clinical malnutrition and other issues.

His TTG (the abbreviated name for the test you mention) was over 128 (our hospital stop recording anything over that number so it could of been much much higher). After being gluten free for 3 months it was down to 70 and now 18 months later down to 10.

He was also temporarily lactose intolerant and his blood tests fired up all kinds of false positive allergy results.

He completed the milk ladder about 3/4 months after diagnosis and has passed various food challenges so we are now GF only. Apart from needing iron supplements he's doing ok.

So sorry you are going through this, if they are going for a biopsy you do need to continue eating gluten and yes to getting the family tested and making sure they are also on the gluten.

Feel free to ask anything you need, it can be very daunting at first.

Sounds likely coeliac. Not too long til 7th. ask if any earlier cancellation appt available?

On the temporary lactose intolerance it was explained to me that with coeliac the body attacks the gut and flatten the villi (sp) leaving it damaged and struggling to absorb nutrients, digest food etc.

Apparently lactose is one of the most difficult things for your body to break down, it's thick and heavy, so it's a case that the gut is that damaged it just can't digest it properly so can cause vomiting and other symptoms. With DS it was dairy that appeared to be making him sick so we cut it out but once he was GF and his gut was healed he could go back to eating it again.

The consultant said lots of people assume dairy/lactose issues when they have gastro problems and it's often masking something else.

Thanks again for all the responses. Nico and Jammy it sounds like you both went through nightmares trying to get your DCs diagnosed and treated, I'm glad you got the answers eventually.

DD1 is nowhere near as bad as that- I don't think she has lost any weight, mostly just worn out and in a bit of discomfort.

Cestlavie as luck would have it, my DH had a doctor's appointment booked for the 2nd Jan and decided he didn't need it for himself, so managed to get DD1 booked in instead. So not long at all. I've also got an appointment the same day to review my depression meds, so will ask about blood tests for me. We've been a really unhealthy family recently, here's hoping that 2019 will bring us all better health!

Great news on switching the appointment!

The blood tests we had to test us were just a straight forward one with the nurse took 2 mins.

Let's hope you get through the system quickly and easily. If she does end up with a coeliac diagnosis there is loads of support out there, literally at your finger tips.

Coeliac UK are marvellous when you start out, in fact you could probably call them now! They have a helpline and are really good, they can help with diagnosis and testing and they also have dieticians on the phone lines.

Yes, I have been looking at the coeliac uk website, they look really helpful. The helpline is closed until 2nd Jan, but I may well give them a call when we know what happens next. It's great just to be able to talk over my worries on here as well.

Going to join you in some waiting. Eldest dd (7) was diagnosed earlier this year. So we had her sister tested (she's 3) and her ttg is 108. Got a letter today confirming her consultant appointment but the gp has sent it to the wrong department! Never mind that it took nearly 6weeks to get it sent. So will need to try and get it changed next week so she sees the same consultant as her sister.

I also have a positive blood test but not so worried about getting me sorted as her!