CD and Factor V Leiden: I am wondering if anyone with CD on this site also has a diagnosis of the blood clotting disorder Factor V Leiden?

[Waterlily]

I have this blood disorder and have only recently been diagnosed with CD. I was amazed when the Gastroenterologist, having noticed my blood status in my notes, specifically asked if anyone else in my family had Factor V and if so they should be tested for coeliac disease as, he said, there is now some research showing a connection between the two. I have only managed to find a few snippets on the internet about this, though it does seem there could be something in it. Incidentally, my blood group is A+ which is the most commonly occuring group in Factor V Leiden.

[tassie]

I haven't got a CD diagnosis as I was gluten free before the tests and a lot better for it so I believe I am and not willing to go back on gluten to prove it.

I also have Factor V Leidon and APLS

[Waterlily in reply to tassie]

Thanks for your reply. I too was gluten free before the tests but I was also given genetic testing which came back positive for CD. No gluten challenge or invasive investigations needed. I was not too bothered about a diagnosis for myself since I felt so much better, but I have a daughter who also has Factor V Leiden and 3 grandchildren (status as yet untested) so it was important to me for their sake.

[Venetia]

no i haven got a clotting disorder but after initial diagnosis I had some skin cancer lesions removed and found I bled more because vitamin k levels were low, my face had some very impressive bruising , the second time the plastic surgeon suggested an injection of vit k ,usually given to babies post birth and this worked well . several years later after another skin cancer lesion was removed my vit k levels were ok and a subsequent lesion was removed with no problems at all,(the skin cancers were nothing to do with coeliac disease just sun damage) Just thought of mentioning it here as talk about bleeding, I wondered if there was more of a problem at the time but seems with me just the poor absorption of Vitamins A E D and K,

[Waterlily in reply to Venetia]

Thanks for your reply. Your blood problem almost the opposite of thrombophilia - and I suspect your own analysis of your problem is correct .

[tmoxon]

Hi I have never heard of this before, when I have my blood tested my platelets are above the normal range and have an ! mark next to them, the range goes to 400 and the last time mine were around 465, none of the doctors have ever mentioned anything or offered treatment for the above range score, I have wondered about it though. I was going to ask whether anyone else had high platelets as my daughters is also high but hers is just within range. I also have the same blood group as you A+

[Waterlily in reply to tmoxon]

Thanks for your reply.

[Apricot]

Am Coeliac, and also have the Leiden V. (Plus assorted other stuff...)Never had any connection made between the two...so this is interesting...

Have always bruised easily...and bled horribly when having dental work done, need stitches etc.

A lot of research work on the Leiden V was done at University of Sheffield.....looked extensively at family..including those in USA and Australia. Blood Group 0...

Apricot

[Waterlily in reply to Apricot]

I submitted a reply to this and it seems to have disappeared, along with two others I replied to! Too late tonight to rewrite it. Will do it when I get time tomorrow. But thanks for your input. At least my links got through!

[weee in reply to Waterlily]

That funny, my lengthy reply has also disappeared..:(..ughhhh

[Waterlily in reply to weee]

Seems to happen quite a lot. Learned to copy answer before posting now!

[Waterlily in reply to Apricot]

Sorry not to reply again sooner. I found what you said about bleeding and bruising interesting as that has never been a problem for me - unless of course I was anticoagulated at the time. Did your family investigations throw up anything significant? All my older relatives have died so I am unable to trace back my family beyond my mother and dont know if she had CD, though I suspect she did. Only way I knew I had inherited Factor V fromm her was because my dad tested neg (blood group B). However, it is entirely possible he was the one with CD which of course would blow my hypothesis completely out of the water.! LOL.

[Apricot]

Further to my post ...have since found out that my sister...also has the Factor V Leiden..is blood group A.

If you have any citation for the research..I would appreciate it.

Many thanks

[Waterlily in reply to Apricot]

This is what came up on a couple of search engines. It's not much to go on, though there are a few research articles that only professionals can access.

ncbi.nlm.nih.gov/pmc/articl...

gut.bmj.com/content/55/11/1...

bmj.sk/2009/11004-13.pdf

However I also came across this reference from 2007 which interestingly completely slams it down! Obviously there have been a few more persistent researchers out there since

celiac.com/gluten-free/topi...

[weee]

My lengthy reply disappeared. So a shortened version. I was diagnosed coeliac after a DVT in my arm and was told that I had an 'antibody' which made me more susceptible to blood clots.. I was also found to be anaemic (again) and an endoscopy diagnosed coeliacs..

I no longer attend haematology