Coeliacs Testing problems

[moosemama]

Hi

I have a thread in special needs [[http://www.mumsnet.com/Talk/special_needs/947098-Help-back-on-gluten-for-test-but-don-39-t?msgid=1 9299108 here] about my 8 year old ds.

He is having a terrible time having had gluten reintroduced after a 4 month period of exclusion.

I guess what we really want to know is, if there is any point in pushing on with the testing if we are going to keep him gluten free anyway?

Sorry thread is here

yes there is. Main ones are financial help with the diet and ensuring that other people treat it seriously. Being a coeliac means that other family members have an increased risk and should be tested. Also you'll be aware of the possibility of related conditions like osteoporosis and dermatitis herpetiformis.

You could try asking for a blood test before the 3 months are up. If that is positive there wouldn't be much point going on, if negative it might just mean he hadn't had long enough to develop antibodies.

forgot - if he isn't coeliac then you may find that digestive enzymes like Peptizyde will help with behavioural issues and you don't need to be gluten free. However if he is coeliac the enzymes don't remove all the health risks.

Thanks for your reply tatt. I have been to bed, but couldn't sleep. I was mulling over the fact that he is now half-way through the time he needs to be on gluten before the test and maybe it would be wrong to quit now, but he and our family are suffering so much and I can't see him coping at school for most of the summer term like this.

We can cope without the prescription food - just, as we had been doing so for 4 months while he was on the exclusion diet. We just tended to eat a lot of healthy home cooked food and I baked using doves farm flour for treats. The most expensive thing was bread for his lunch-box, as he would only eat the Genius stuff and it's not cheap.

I did know it could be genetic, but somehow hadn't made the connection to other family members needing to be tested. Its always been fairly obvious in ds as his bowels have never been normal, right from weaning onwards. His brother and sister don't suffer in the same way though although I have just read that some people can be coeliac and asymptomatic.

I didn't know about the osteoporosis risk, but was aware that there can be problems in later life due to lack of absorption of the right nutrition.

Interestingly my Mum has just been advised to give up wheat and she's also recently been diagnosed with osteoporosis. Dh also has quite bad digestive problems that have always been put down to IBS and he has been thinking about asking to be referred for testing. His mum also suffers with her digestive system in a similar way.

I assumed ds didn't have dermatitis herpetiformis as he generally has good skin. He does however get a pimply rash on both cheeks which feels rough to the touch and gives him a sort of rosy cheeked appearance when he has gluten. I've looked at quite a few images of DH though and it looks nothing like it.

I'd heard about enzymes, but wasn't sure where to get them or what the benefits would be. Can you buy them in good health shops? He is already on pre and probiotics and a good quality supplements.

I'm confused - you say he's half way through but that the testing is on 6th July? If he's been on gluten for 6 weeks and he's showing bad symptoms then the blood test might pick up antibodies now. That should be enough to get other people (like schools) to take it seriously, your gp would probably prescribe and it would be enough to get other relatives tested. A biopsy then probably wouldn't add much but that is something you might want to ask your doctors about. If the blood test was negative then there would be reason to carry on.

The enzymes are available from various internet sites but not, as far as I know, on the high street. This site was the first to sell in the UK Mandi's Mart

He shouldn't take the enzymes before any tests.

Hi, sorry, middle of the night posting wasn't very clear.

We put him back on gluten at the beginning of March so we could ease him back in rather than it being a sudden shock to his system. We were told he needed to be fully back on it for 'at least' three months, so that would be April, May and June. I was just thinking in my overtired state last night that he'd done two months, but in reality one month was only a very gradual reintroducion rather than a full on gluten inclusive diet, iyswim.

His symptoms have been increasing inline with his gluten intake, but he's only been fully back on it for about a month, so I'm concerned about getting a false negative if he's tested now.

Its just got to the point over the Easter break that his behaviour is really bad, even compared to before he came off gluten in the first place. I have never known him this bad.

I have just found out on the Coeliac UK site that you can buy a home testing kit which doctors say is 95% effective at identifying coeliacs and if you test positive then its worth going for further testing.

I also read on the same site this morning that you need to have been eating at least two gluten containing meals a day for 6 weeks for the blood test to be effective, so not as long as we had previously been told.

As ds has been back on gluten since the beginning of March, but we were only introducing it gradually at first. In theory we could try and get them to do the blood test in about a fortnight and, given the severity of his reaction to the reintroduction, he may get a positive from that.

To be honest, I would rather find out for sure, as you say it is a serious illness and he needs other people and professionals to take it seriously. Its just so hard seeing him like this.

Will have to discuss it with dh - again, when he comes home later, I think. Two weeks is just about doable - but two months would be unbearable.

my experience of home testing kits is that they are rubbish - a misleading waste of money. Explain the position to your gp and they should agree to a free blood test.

I'd ask for a blood test now - tell them that it's just not acceptable to be waiting so long when your son is obviously reacting to the gluten. Doing the home test kit isn't really going to get you any further

FWIW, I was diagnosed via blood test, went gf, then eventually made it through to gastroenterology who insisted that I'd have to go back on gluten for 12 weeks and have a biopsy to be looked after by them. I refused to do this, and my gp was happy to prescribe gf food for me on the principle I'd had a positive blood test, and a massive symptomatic response and nothing more was needed

While we were waiting for our consultants appointment for our DS2 we were a bit impatient and did the Biocard home test from Boots (£20) on our DS2 who was 3 and had strong Coeliac symptoms and he came out positive. When we did home test on DS1 who was 5 and had no symptoms it came out negative however the test by the consultant came out positive for Coeliac Disease.
After a positive blood test for Coeliac Disease this may then be followed by a biopsy.
If you get a positive diagnosis for Coeliac you also get referred to a consultant and have yearly checkups.
My DS2 is a completely different person since giving up gluten so although we are not in the same situation as yourself I know how it can have an effect on behaviour.
Personally I have found the flour mixes/pasta/bread mixes from prescription very useful.
Good luck whatever you decide.

Hi, sorry I disappeared I had ds2's birthday party at the weekend and then gearing up for school which in itself has been really difficult with ds1's current behaviour.

Thanks for your reply Booner.

Just to compound things, we received a letter on Friday saying his appointment with the Paed (when they were going to do the test) has been put back a month to August. There is absolutely no way we could keep this up until then and we are actually on holiday on the new appointment date anyway.

He ate pizza and garlic bread at his brother's party on Sunday (he had been really looking forward to it) and was so ill afterwards. Really explosive watery bowel movements, dizzy and lightheaded, followed by really low mood and lots of tears in the evening.

So, I have a telephone consultation arranged with the gp that referred ds for ASD assessment this morning. Am sat here now waiting for her to call. I am hoping that as he has been eating some gluten every day since 1 March she will arrange for him to have the blood test in May.

I have been reading up a bit about the test/s. Am I right in thinking that he needs the tTg Elisa and IgA + IgG Elisa tests? I'm sure the GP will know, but I'm worried that if its not their specialist area they might just go for some standard blood test that isn't specific enough on its own.

I know I'm over thinking things and stressing, by the way.

Right, scratch that. GP just rang and she was fantastic.

She has left the blood test forms at reception and arranged for him to have a tTg test straight away. If it comes back negative or inconclusive she advised us to keep him on fairly high levels of gluten for another month and then she will retest. So even if he tests negative now he should only have to be on it for a few more weeks. If that's the case, we will all just have to grin and bear it in the meantime.

I could have kissed her, she was so understanding and supportive.

She did say if the test is positive they will want to do a biopsy. We will cross that road when we come to it I think.

Great news, that sounds like a good plan and really pleased your GP was fantastic.
We were super lucky that the GP we saw before diagnosis has a mother with Coeliac Disease so was very understanding as well.
We didn't have the biopsy but that was because my niece also has Coeliac Disease and our consultant decided a positive blood test and family history of Coeliac Disease was enough evidence.
It is really difficult letting your child have gluten when you know it makes them ill and changes their behaviour.

Thanks Booner.

Its helps to know that someone else understands how hard it is.

I have to add to this thread.
You seem to be in a vaguely similar situation to us.
DD was ver ill. over a long period of time, she complained of pains in her tummy and legs, she got very tired and lost wieght. Doctors told us that she had growing pains. Then it got so bad I couldnt cope anymore, we saw a new doctor who suggested coeliac, took blood, told us to put her on GF diet, and referred us to GOS hospital. When we got to GOSH, a few months later, we were told to introduce gluten back into her diet for 3-6 months to cause enough damage to her bowel for a gastroscopy to be done. Feeling that this was unacceptable, as 1 biscuit had her up all night crying in pain, I refused point blank. Was told by the very unpleasant doctor that I was being unreasonable, and IF she had a child, she would do this. She also told DP to take me home and convince me! How I got out without punching her I dont know.
From then on we have had no help from doctors. Basically we were told No gastroscopy, no food prescription. So for 5 years we managed without.
Recently we moved surgery and saw a locum doctor. She has a coeliac DD. She heard our story, was disgusted and gave us a prescription there and then. It says coeliac on her notes, she had a positive blood test, no reason to make her suffer. Finding someone who gives a shit is the best thing ever. I cried all afternoon!
Not sure if it helps you, but I feel better telling!
It is very hard when your child is ill, doctors can make you feel very guilty, dont be pressured into anything you dont feel is right! I told the doctors that the positive blood test is enough proof for me, we have coeliac in the family, I wont be making her suffer, and when DD is old enough, she can decide to put herself through this if she feels its right.

Have just looked at your other thread! definately see my post above. If your son is much better on gf, then stay gf! the only reason for a definite diagnosis is the prescription. We were non prescription gf for 5 years. bread is the biggest expense. genius is the only one worth eating and is 2.50 loaf. Otherwise, I cook from scratch, leaving out or substituting anything with gluten in. its not difficult. IMO if you arent comfortable and you arent endangering his life, dont do it!

Moosemama I am sorry that you are having to go through all this and I hope your situation is soon improved.I hope you won't mind you asking a couple of questions.I have a 4 year old who is normal weight and size who vomits frequently and poos 5-6 times daily and he is perpetually hungry and eats nonstop.He is also very naughty and is by far the most difficult of my kids to handle.The description of your childs behaviour on gluten sounds very familiar!.The gp has agreed to refer us to a paediatrician specialising in gastro.From your perspective does my ds sound like a possible coeliac ?.[many apologies for hijacking this thread].