Testing for Coeliac Disease

[DashingRedhead]

DD (5.5) is going for her biopsy next week, she has the antibodies. Has anyone out there had a positive blood test and negative biopsy? I'm just wondering how much of a given it is that she has it. The doctor a couple of weeks ago said it is possible that she has the antibodies but isn't actually coeliac.

IMHE doctors will down-play the likelihood of someone actually having an illness if they weren't the one to spot it! If you have had to repeatedly ask for a test or gone back several times, the doctor will be making light of it to cover his arse if it turns out he has missed something.

Sorry for negativity but at least 4 incidents in my family have led to this conclusion! Saying that, I hope I am wrong and your little DD doesn't have it.

If she does, at least these days people are very aware of coeliac and there are so many 'free from' products now that she will have it a lot easier than previous generations.

xx

I was told that while false negatives with blood test results were quite common, false positives were extremely rare so I think it's highly likely that your DD is coeliac. Just to reassure you that a) the biopsy is nothing to worry about (it'll be more traumatic for you than for her I can assure you!) and b) living with coeliac disease isn't as difficult as it may seem. My DD was diagnosed a year ago aged 9 and she's taken to the gluten free diet really well and is now happy and healthy again. There's loads of advice available and if she is diagnosed I strongly recommend joining Coeliac UK as they are fanatastic. Good luck.

Thanks folks. I thought false positives were rare too ffm so I was taking it for granted that she would be and I was a bit surprised when the possibility was raised that she might not be coeliac. DH is coeliac and very severely so - he was diagnosed age 2 when practically nobody had even heard of it, so we're well prepared! Lots of our food already is GF, but it's things like bread and pasta that aren't and that she eats a huge amount of.

Although my head is very rational about it, emotionally I'm still a bit sad. You just want your child to have perfect health, don't you? I keep giving myself stern talkings-to about how I would feel if it were something really serious. Don't know why I'm being so silly. We went for our pre-op today and I think it was the mention of the canula that set me off.

Epilator we've been lucky with all the doctors we've seen. Perhaps because we've got a severe case of it in the family. Everyone has said better to test than not, even though they all thought she probably wasn't. Her symptoms aren't at all typical or pronounced.

Redhead, when you say her symptoms aren't typical, what do you mean? We have an appointment on Wed to find out the results of blood tests for Coeliac. She has persistent tummy ache, but none of the diarrhea that I thought was normally associated with Coeliac. My MIL has it.

Thank you in advance

DD is the same, Infinite. She has actually the opposite problem: persistent constipation and has been on Movicol for ages. What made me wonder whether it really was coeliac disease was she was completely exhausted, looked totally washed out and started to lose weight. She is quite small for her age, but then I am short and I come from a very short family! She also has started to complain of tummy ache more frequently.

DD hasn't had constipation either, just persistent tummy pains. She seems to be growing and gaining weight normally, and isn't noticably poorly, except for the tummy pains. I guess we'll just wait for Wednesday

Good luck, Infinite.

Thank you, and good luck to you and your DD for next week.

Good luck to your DS, both my sons are being tested on the 12th of May after positive blood tests. The only reason we went for testing for DS1 was because of DS2 really as he is completely asymptomatic.

I am really nervous about the biopsy but also very scared about putting DS2 back on gluten as he has very severe reactions. The gastroenterolist who is perfoming the biopsy said minimum 2 weeks at 1 slice of bread (or equivalent) per day - we'll do what we can.

How long does the procedure last? Will the children be in all day? (we still haven't had any info yet).

Hi Dashingredhead, good luck next week - both my boys are coeliac, one with classic symptoms, the other with none at all, except a bit of constipation which I didn;t put down to coeliac as he is so tall and growing well. When there is one diagnosis in the family, all first degree relatives should be tested - i am an expat so moving around a lot but I think in the NICE guidelines (freefrommum knows!) it states this explicitly. Once diagnosed, you will see a huge difference, I was also sad that they would have to deal with this forever - but it is a really healthy diet for everyone if you steer clear of the Gf processed foods.

yellowhouse - the procedure is really really quick - mine have had both a general and sedation - I got to watch the procedure when he had sedation and it was really interesting. The hardest part of the general was when they give them gas and it is usual that they fight it and writhe around - but they don't remember it at all afterwards, its just a bit upsetting for us. My eldest didn't have gas, he had a canula like adults and that was ok, just the canula going in hurts but he was much older than the little one.

Don;t worry about the biopsy, once its done, and you are gf forever, the boys will feel fantastic. Sorry I can't help you with going back on gluten for the duration, its really hard to see them suffer.

HTH

yellowhouse At the hospital we're going to, they do them in 45-min slots. DD will have a canula and in spite of much talk of 'magic cream' I'm rather dreading that bit. She's rather 'nesh' as they say in the north (I love that word!). She has to have finished breakfast by 7.30am, we are due in at 11am and then the earliest slot is 1.30pm. They said she'll be fine to go to school the next day. It's a children's hospital, so it's going to be that bit easier for her. And I can stay with her until she's asleep and they'll call me into the recovery room as soon as she stirs.

I'm really not good at hospitals though and am struggling a bit with it all . I keep reminding myself about how my lovely little girl turned gradually whiny and hoping that she'll stop! I know she'll feel better afterwards, and that I have to keep smiling for her.

Thanks for the support texas and all of you. It doesn't help that DH will be away for work on the day and the two days before. DD is getting quite jumpy and hard to manage. She is a very thoughtful child and I will have to work v hard at distracting her.

infinite my DD was exactly the same, no symptoms at all until she suddenly started having severe tummy ache. She's never had constipation or diarrohea and certainly no problems gaining weight/growing so I was very shocked when she was diagnosed - she'd always been the healthiest child I knew! I too was very sad at the fact that she will have to live with this for the rest of her life and still get a bit down about it sometimes but I don't let her see that. She had a few 'why me?' wails initially and I let her get that out of her system, agreeing with her that it was unfair but also explaining that life isn't always fair and that it could be a whole lot worse. She seems to have come to terms with it quite well now thankfully but I'm sure she'll have some wobbles along the way.
itshotintexas our experience of the biopsy was very similar to yours as DD had the gas and nobody warned me about the thrashing about so I was really upset but they told me it was perfectly normal and she wouldn't remember a thing (which she didn't). I do wish that she'd had the canula and if ever my kids have to have anaesthetic again I'll be pushing for that I think especially as they end up putting one in once they're asleep anyway so they still have the discomfort of that when they wake up (that was the only thing that DD moaned about when she woke up, her sore hand where they'd left the canula in).
dashing my advice would be to take plenty of toys/books etc to keep DD entertained/distracted because it can be quite a long day. I would also take some gluten free food for after the procedure as she should be able to go gluten free straight away. Also take some books/magazines for you to keep your mind occupied while she's having the procedure plus drinks and snacks to keep you going. Believe me, if she is coeliac, it will definitely be worth it when you see the changes in her after going gluten free. It was like I got my old daughter back. Before the diagnosis, it was like the light had gone out in her eyes but now it's back, she's healthy and happy again and that's what I cling to when I feel sad about her condition.

Good luck everyone and let us know how you get on.

Gluten free pasta is more expensive but we switched years ago and it's really fine - my personal preference is for the rice-based pasta, rather than corn - Orgran have a good range.
Bread is more of an issue - but you can get GF flour from Dove's Farm and make your own, if you get the time? It's not so easy to use a breadmaker but it is possible - Dove's Farm website has some useful recipes as well.

Being coeliac now is not quite as much of a chore as it would have been when your DH was a child - the Free From range is so big now that in reality your DD won't miss out too much at all.

Hope the biopsy goes swiftly and well.

Thank you freefrommum, the two people I know with Coeliac both have really upset stomachs when they eat gluten, I assumed that it couldn't be that, so good to have another viewpoint.
We eat a lot of pasta- it's one of DD's favourite foods, but I don't think that GF pasta is usually too bad.
I'll just be glad to have some idea of what is wrong with her!

Thanks all, I am also looking forward to the procedure being over for both my boys. I also have two girls but can't face going through the whole trauma just yet. I will have them tested after the boys have had their official diagnosis.

We started DS2 on gluten last night & this morning, he already looked paler and unhappier. I suspect it's going to be a hard 2 weeks. I will be counting the days until I get my lovely bouncy boy back! It's easy with DS1 as he has no symptoms at all so he is just carrying on as normal. The only thing I'd say with DS1 is that he is rather small (very slight and quite small in stature) which thinking about it he shouldn't be as DH is very tall and I am above average height too. Maybe he will start growing faster once he is GF - who knows!

Good luck again with the procedure and let us know how it goes..........
PS I know how you feel about feeling sad. I have huge pangs of sadness that BOTH my boys have this condition and keep thinking "why us". But I guess it's not a useful thought to have an have to keep looking on the bright side x

Thumbwitch we find the Salute pasta far and away the best. I always have a taste of any new product so that I can tell DH whether it's anything like the original! And the Genius bread also. And their frozen pastry is amazing! I can do GF pastry, but sometimes it's about the time. Cooking everything from scratch is so time consuming. These products are all quite expensive but well worth it. We dry and crumb the ends of the Genius loaves and keep them in the freezer so we can make chicken nuggets, fish fingers, etc. We've even done our own chicken kievs! DH still reminisces about that really revolting bread in a tin that he used to get...

yellowhouse I really feel for you - it must be awful seeing it affect your DS like that. How old are your DSs?

to you all. It's exactly why I love MN - mutual support, knowledge and understanding .

Yes, I crumb all the crusts from my loaves as well for coating fish, putting in Christmas pudding etc.
Don't know the Salute brand but then I'm in Australia now and Orgran is an Aussie company (still bloody expensive mind you but then so's everything here )

Salute is Italian. You can only get it from Waitrose or Ocado I think .

salute is in waitrose

Dashingredhead, hi, my DSs are 5.5 and 4. So my DS1 is the same age as your DD1. I have tried explaining to him about going into hospital as we got the letter today saying we'll have to be there for 7am!!! Hopefully it will be over very quickly and they will be back home for lunch!! (wishful thinking!)

I think that might be wishful thinking yellow! The procedure itself is quite quick but there's a lot of hanging around before and after unfortunately so I would prepare yourself for a long day just in case.

Haven't read the full thread, but DD1 is positive via blood test and negative via biopsy.
It does happen. At the moment she is having six monthly blood tests and they will probably redo the biopsy if there is any significant change in these.
We had talked to her about what was going to happen, what food she wouldn't be able to eat and various other things. She was adamant there was nothing wrong with her.
The negative diagnosis was quite deflating, we'd spent months preparing to go gluten free, then told carry on as normal.
Hope all goes well with the biopsy

That's very interesting *popelloucla", I've never heard of someone having a positive blood test but negative biopsy (lots of examples the other way around of course). It must have been very difficult when you've built yourself and DD up for the diagnosis and the prospect of going gluten free only to be told it was negative.

freefrommum, the consultant did tell me what percentage of positive blood tests gave negative biopsies, but I can't remember the numbers, it was quite low though.

Hi all,
we are on day 7 of 16 days "gluten challenge". I am very surprised at how well he's taken to the reintroduction of gluten seen how terribly poorly he had been before we'd gone gluten free, which is the reason we pushed for him to go gluten free for a while despite all advice against it (drastic loss of weight, huge bags under eyes, extremely pale, couldn't really walk for very long, terrible vomit/diaorrhea, terrible tummy aches, you get the picture).

I suspect it is because his system had healed and now will be getting gradually worse. His poos have discoloured again but apart from that he's not had any major symptoms - I am keeping my fingers crossed for the next 9 days and then I can put both boys on gluten free!!!

The consultant told us that we go in at 7am, then he does our first son at 7:45am, then another child and then our second son after that. He reckons that all being well we should be out by 12pm.

I am dreading it so much now I wish I could wave a magic wand and have it all over and done with. Good luck DashingRedHead for this week, please let us know how it went!! xx hugs xx