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Question for parents of coeliac children.

(17 Posts)
Charmingbaker Wed 16-Jan-13 13:12:10

Have you or your partners been tested for coeliac disease?
In the past 6 month both my DSs have been diagnosed with coeliac disease. DS2 was very symptomatic, DS1 had very few symptoms but tested positive.
They have clearly inherited this from myself or DH. Our GP sees no need to test us as we have no obvious symptoms. DS1 has only just been diagnosed so we will become a gluten free household anyway, just wondering if we should push to be tested before going gluten free? Would love to know what you have done.

Smudging Wed 16-Jan-13 13:19:28

Message withdrawn at poster's request.

freefrommum Wed 16-Jan-13 13:26:28

Yes yes yes! You MUST be tested. Obviously your GP has not read the NICE guidelines so you will need to go back and wave them in GP's face: publications.nice.org.uk/coeliac-disease-cg86/guidance (see section 1.1.2 which clearly states that blood tests should be offered to all first line relatives). There is a significantly increased likelihood that one or both you will also have coeliac disease. Both my husband and I were tested but came back negative however many adults have little or no symptoms or their symptoms are put down to IBS etc and do not get diagnosed for years (if ever). Check out Coeliac UK for more advice in this area. Their helpline is really good. Worth becoming members anyway as you will get their food directory (known among coeliacs as the food bible!). Good luck.

DSM Wed 16-Jan-13 13:27:27

Coeliac isn't necessarily inherited. You have to have a gene present which pre-dispositions you to be able to contract the disease, hence the genetic connection. But you can have the gene and never develop the disease.

Neither of my parents have it.

I don't think you should get the test if you have no symptoms. It's bloody hard enough for those who are suffering symptoms to be diagnosed correctly. In the same way I don't expect to have my DC's tested.

Also you can contract the disease at any time. Do you want to be tested every six months? Every year? if you do show symptoms at any time then yes, you should be tested. But until then, no.

freefrommum Wed 16-Jan-13 13:43:28

Sorry DSM but that's very inaccurate. Yes, coeliac disease isn't ALWAYS inherited but there is a strong genetic link as anyone who has a first line relative (eg parent, child, sibling) who's coeliac has a 1 in 22 chance of also having it (compared to 1 in 100 for the general population). Here's a link to an article in US medical journal which clearly states the increased risk and need for testing as many will be 'atypical' and therefore possibly not have symptoms and be overlooked: http://www.ncbi.nlm.nih.gov/pubmed/15506303

I'm not suggesting that all first line relatives should have a biopsy (unless they have significant symptoms) but they should definitely have the blood test. I am quite shocked that you are not having your DC tested as this is totally against all current medical guidance but that is obviously your decision (at least until they are old enough to ask for the test themselves).

Undiagnosed coeliac disease can have severe long term effects including infertility, osteoporosis and even bowel cancer. Many people do not get diagnosed until middle age when much of the damage has already been done which is why the NICE guidelines were established to try to improve the diagnosis of this disease.

JoleneB Wed 16-Jan-13 15:45:48

Completely agree with freefrommum, also just to add, you need the blood tests before you become a gluten free household, gluten must be present in the diet for blood testing to work wink

freefrommum Wed 16-Jan-13 16:11:20

Ah yes, well said JoleneB, forgot to mention that important point!

DSM Thu 17-Jan-13 00:25:36

Uh.. I was going on what my doctor said so completely prepared to be told I'm wrong, but I don't know?! I'm not 'nor having' my DS tested, I was just told it wasn't necessary?

So I should get my DS tested then? Can I ask my go to do this?

herewegoloubylou Thu 17-Jan-13 00:28:29

DSM, that link ^^ in a post above is to the NICE guidance referred to on your own thread. smile

DSM Thu 17-Jan-13 00:49:35

Sorry.. I miss links that aren't links blush

Charmingbaker Thu 17-Jan-13 06:53:42

Hi, thanks for all the advice

DSM - I hot my DS1 tested even though he had no symptoms. DS2 became bet ill very quickly ( a tummy bug triggered his coeliac). DS1 has just started his GCSEs and I wanted to know if he was showing any sign at all. I first spoke to my GP about DS1 end of August and it has taken til now for the process to be complete ( just blood test, referral to gastro, repeat blood test and endoscopy - and initially offered endoscopy at end of Feb). Funnily enough he started getting tummy cramps mid Dec, so I'm glad I started the process.

Everyone - I'll get back to our GP and sort out tests. I've had to argue with various GPs to get both sons tested (when I suggested to one GP that DS2 may be coeliac they said he wasnt he just had a tummy bug, come back if he's still ill in 3 weeks - he was admitted to hospital later that day and had a confirmed diagnosis just over a week later!)
I think I knew we had to be tested, but all GPs in our area are so clueless to coeliac I now have to gear myself up when going ( before Xmas took DS1 to doctors to check out if his tummy pains were coeliac or norovirus - they suggested taking him off gluten even though he was due to have blood tests a week later- thank god I knew to ignore that advice)

freefrommum Thu 17-Jan-13 16:09:02

Sadly, it seems that far too many GPs are pretty clueless when it comes to things like coeliac disease and allergies. This is why we have to keep promoting the relevant NICE guidelines on here so that people can get the right treatment and advice. I strongly recommend getting in touch with Coeliac UK as they really are the experts and I'm sure they'd like to hear these kind of stories to back up their campaigns for better diagnosis and support.

DSM sorry if I came across as being very critical I just get very frustrated at how much wrong advice is handed out about coeliac and allergies. I definitely think you should go back to your GP and ask for your DC to be tested. This can be done in the GP surgery as a simple blood test. If the tests come back negative and they are not showing any symptoms then that's great. Of course, if they do develop symptoms in the future you should ask for further testing. They must be eating gluten regularly for at least 6 weeks before the test in order for it to be accurate. Also, if you have any brothers or sisters yourself, they should also be tested really, especially if they have any symptoms that may have been put down to things like IBS.

DSM Thu 17-Jan-13 16:23:29

I can't, my GP specifically said that DS wouldn't be tested. She said that if he ever shows symptoms then he'll be tested.

He definitely doesn't have it at the moment. I will know if he does.

freefrommum Thu 17-Jan-13 21:08:21

Yes you can DSM, take the NICE guidelines to your GP and demand a blood test for your DS. You are well within your rights to do so and if they refuse then complain to the PCT. Having the test done now when he has no symptoms will at least provide a baseline for comparison if he ever does develop symptoms so it's really important. Please please contact Coeliac UK for more advice on this.

Charmingbaker Thu 17-Jan-13 21:34:20

DSM- my GP refused to test my son when I first asked last August because he had no symptoms. I couldn't see any symptoms in him, but he was about to start his GCSEs and I figured if he's clear now he'll be clear for at least a couple of years- remember it can take a long time for symptoms to show and they can appear very gradually so you don't necessarily notice. Even with no obvious symptoms he has come out positive. He has been quite tired and grumpy, and this Is now improving. We had put that down to him being a teenager, his friends mums had said their kids where just the same, but I now see this was exacerbated by the coeliacs. He did start getting more typical coeliac symptoms a month ago., and fortunately he only had a few weeks before going gluten free so hardly missed any school. If I had waited for symptoms he would have been Ill for a while whilst waiting for diagnosis.

itshotintexas Tue 22-Jan-13 03:54:46

Dsm, my ds2 had classic coeliac symptoms, and was diagnosed shortly after. We were told to test all first degre relatives so my dh and me were tested, he is negative, I have both genes for coeliac, but ok at the time. I looked at ds1 , tall, growing, no symptoms at all and decided not to test. Fast forward a year, we were moving overseas and I thought I would just check to make sure. His antibodies were off the scale, he had severe gut damage when viewed at endoscopy - imagine how bad I felt. Protocol is as freefrom says, all first degree relatives need to be tested. To add to list of complications if left untreated, lymphoma, liver failure, print off guidelines and take them in. Good luck.

KTKT Wed 23-Jan-13 21:46:17

I totally agree with FreeFromMum. DD1 (5) was diagnosed as Coeliac last year. When I took DD2 (2) to GP, the Dr said only to test her if she was showing symptoms!!! (DD1 had no symptoms at all). This shows the total lack of knowledge and experience within the NHS. When I said to GP that I would be a negligent parent if I didn't get DD2 tested, she actually agreed and admitted lack of money within the NHS meant they wouldn't help me!
DSM - DO get your other child tested. I paid privately in the end because ones health is of paramount importance. As a parent we are responsible for looking after our children - even if uneducated GP's working within the financial constraints of the NHS can't help us.
Coeliac UK are fabulous as is this forum for knowledgable and experienced advice from fellow sufferers. Good Luck!

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