Has anyone had the CD Gene test?

[tmoxon]

Just wondering whether anyone has had the CD gene test, my daughter has been diagnosed with IBS and ME and I am just wondering whether she has CD. Tests for CD have come back negative. I know after listening to an American podcast that they tested to see if relatives carry the CD gene and test every year if the gene is present, if it isnt present the person will never get CD and they dont have to worry about getting tested ever again. Seems very sensible to me.

[Liana]

Yes, I have had the DNA testing done for exactly that reason. The specialist wanted to see if he could rule out the potential of CD being an issue without the gluten challenge and biopsy, so he ordered the test for me. It came back positive. I do have one of the genes that indicates that I am genetically predisposed to developing CD. It does not mean I will, but it can never be ruled out either. As I am gluten intolerant to the extreme, eat a completely gluten free diet and have a family history of CD, I am not concerned about a specific diagnosis. I just don't eat gluten. By the way, I have IBS and Fibromyalgia (along with many other issues). I live in Canada.

[tmoxon]

Hi Liana

Thank you for responding, I was hoping to hear from someone in the UK, but I do value your answer so thanks. After listening to the Hold the gluten podcast i know that in the USA they provide this test but wondered whether it was available to us on the National Health Service. To me it makes perfect sense as if you dont have the particular gene then any problems can never be attributed to CD and I dont know how much the blood tests cost but surely it would be cheaper than going down the path of more and more blood tests and then possible endoscopy.

For years as a little girl and teenager my daughter would get up in the morning and say she didnt feel very well, there was nothing that we could put our finger on. She has the same mild stomach issue symptoms like myself, has hayfever type allergies like me and migraines, however has had 2 blood tests and both have not found evididence of CD we asked that she be tested to make sure that she isnt someone who doesnt produce the antibodies but apparently she does. The gene test would to me be the best option. Thanks again

[Hidden in reply to tmoxon]

I don't think the gene testing is available on the NHS. I've read that there is no UK lab which does testing (tests are sent to the US) but I can't vouch for it as it probably came from a website providing the tests!

Apparently the implications of a negative test are not straightforward and the results difficult to parse (though I note that the article is not recent, so perhaps things have changed since 2008 - ?): celiac.com/articles/21567/1...

Good luck.

[tmoxon in reply to Hidden]

Thank you for replying Hollyann, I have read the link you sent and it sounds as though the genetic testing may be quite complicated to interpret, and if it isn’t done very much over here then it may be even more difficult to either get the test done and then actually rely on the people who are looking at the results to read them correctly.

[Hidden]

Hi tmoxon I have recently had the gene test in the uk. I don't think that the bloods were sent to the States but will ask when I go back to the hospital next week. The blood tests look for HLA DQ2 and DQ8. I was negative to both and all other bloods were negative for CD yet I still had partial villous atrophy. Now we are going through yet another endoscopy to see if there is recovery of the villi. I hope that you manage to get your daughter sorted out and she starts to feel a little better. Sometimes it feels like a very long road we have to travel in order to find a diagnosis and to begin to recover. As many of the members of this site have said to me over the last few months keep your chin up,try to stay positive and have a bit of a scream and shout to let off steam when you need to. X

[tmoxon]

Hi Busby Thank you very much for your reply, sorry to hear that you are struggling to find out exactly what is wrong. Have you looked at Hollyanns link as that would appear to point out that the gene test isn’t as cut and dry as I thought. After hearing about the test via the podcast I listen to I thought that it was a black and white answer to whether you had the genes responsible for CD. I totally agree with you about the long road to recovery I thought that once I went GF I would feel better but to be honest I can’t tell much difference. I hope your endoscopy goes well and that you find out what is causing the issue, please keep us posted. Thank you very much for your help

[Hidden in reply to tmoxon]

Hi again tmoxon.

I hope my reply doesn't put you off having testing, which wasn't my aim. I was really addressing the assumption that the test results would be, as you say, cut and dried. I too was interested in being gene tested (both my mother and I have had gut problems and other symptoms but no diagnosis, and my mother's father died of bowel cancer) so I investigated what it would mean and what the implications are and I just wanted to pass on the link so you could see what was involved. It seems like you'd just need to find someone who knew what they were on about to interpret the tests.

And if it helps at all, I've been gf for over four months and I don't feel any better either! My blood test was negative for cd. My only gut symptom is occasional gastric dumping (and some vitamin/mineral deficiencies, which could be gut-related) which my doctor said sounded like IBS. It is the devastating complete exhaustion and weakness that I'm trying to tackle with the gf diet and a load of supplements, but no improvement so far.

Good luck with your health and your daughter's.

[tmoxon]

Hi Hollyann

No you didn’t put me off at all it is just that someone mentioned on here the other day that blood tests you have for deficiencies etc. sometimes come back as normal yet they can be at the lower end of the scale and you could not be feeling at your best simply because they are too low for you. Someone I know have a very bad infection a couple of months ago and it took 3 tests to find out that it was an infection, they knew they were ill and kept going back but the first two tests came back as negative, so it makes you wonder just how accurate the tests are.

At least we know that the gene test is available after Busby’s posting so perhaps there is light at the end of the tunnel.

Sorry you are not feeling any better with the GF diet, it can be disheartening, the only thing that keeps me going is the fact that I know I will feel worse if I don’t carry on with it.

I hope you find some answers soon, it really is a minefield getting the correct information, I think that the people on this website are more knowledgeable that the doctors etc sometimes.

My daughter like my symptoms are intermittent, neither of us suffer the really bad stomach issues ( although we do have some but not as severe as others do) so I never went to the doctors with my ailments apart from once or twice which was a waste of time and then I never really pursued the problems

Many thanks for your help and good luck with getting sorted out

[Jacks]

Hi, I did have the HLA gene test as part of a UK research study into the number of coeliacs with DQ2 and DQ8.

[tmoxon in reply to Jacks]

thanks for letting us know Jacks

[borat]

Hi. I live in Norway. I have had lots of health issues, including ME and wanted to rule out CD. I also found out that I had cousin and a half sister with CD. I ordered a gene test from Peter Osborne in US. It came back positive for both CD genes.

[tmoxon]

Hi Borat thank you for your message, I had forgotten all about this post. As far as we are aware my daughter has had the gene test, although we did have to complain about it as the first test went missing, a second one was eventually done which we were told was negative. We have never seen the results so have no idea what the test was.

Thank you for the information regarding the doctor in the US. At least we are aware that if she wants to be checked again the option is going to be available.

I dont know whether you are aware but in Australia they are working on a vaccine for CD which will work on people with the particular gene, so if or when that ever becomes available I would assume that the gene test would have to also be available so that people could see if the vaccine would work for them. smh.com.au/healthcare/vacci...

Hope your gene tests will help you