Does anyone here have any experience of Coeliac Disease as an adult?

[foxinsocks]

Just wondering as I've been undergoing blood tests recently because I've been feeling v run down and tired, headaches, nausea - also had some strange rashes on the outside of my knees and elbows.

Had a blood test which showed I was midly anaemic (as I was when I was tested several months ago) and also my white blood cell count was down (apparently typical of an autoimmune reaction).

My useless GP (didn't see the normal one) told me she thought I was just recovering from a virus. Whilst I'd like to have faith in her judgement, I just cannot believe I could have had a virus for so long (these symptoms have been going on for several months).

Whilst searching for a picture that matched my (apparently unidentifiable) rash, I found one that matched it exactly and saw that it was linked to have Coeliac Disease. This would also tie in to my other symptoms and my blood results. I'm not going to obsess about it but I'm wondering if anyone has it or has a family member who has it and can tell me what their symptoms were like and how they had it diagnosed. Thanks.

Hiya again... I spoke to my Mum last night but I didn't have the pc on so had forgotten a few details.. She did say however that the test for coeliac as it shows on your bloods form is 'Endomysial Antibodies' She said something about the white antibodies show your body reacting adversly to the wheat etc but I will ask her that again properly.
She also said that when you have a blood test for coeliac, it is possible to get a 'false negative' result - ie it will come back negative but you do actually still have it but in a different form. It isn't possible to get a false positive though.

cmm is right, it is called something like dermatitis herptoformia. We belong to the coeliac society as my dd has coeliac disease, but they help people with d.h. aswell. the treatment is the same for both, a strict gluten free diet. hope you get this sorted soon, it took nearly 2 years to sort my dd

Callmemadam, yes it was lichen planus (see fauve). I saw my consultant gastroenterologist last week and he was not aware of any connection between lichen planus and coeliac disease, and pointed out that as I am now gluten free, the mouth problem cannot be linked to gluten! I have to have a second biopsy to confirm my villi are now standing up (after 6 months gf).

Since going gf, I have felt less tired and more energetic. It is a pain looking at the labels of every food item I buy, including sweets and chocolate, and having to ask at restaurants which meals are gf (and then having to explain to the waiting staff what it all means).

thanks everyone - what worries me is that I seem to have spells of that rash (and it is almost certainly that rash because I've seen pictures of it) and then I have spells where the rash is better but I have no idea why that is - according to what I've read, once you have that rash, it doesn't disappear on its own. But it has only started appearing in the last month so maybe I need to be more run down before it comes back again!

If I do have this, I have a feeling it's probably only started to get bad now (i.e. has been getting worse gradually over the last year or so).

Thanks for your help. I'll let you know what happens.

Thanks clarkkent - I asked because I also have erosive lp and have it barely under control (no steroids) but it seems to be linked to stress, but I know it is an autoimmune reaction, and I come from a family with a big history of autoimmune conditions such as thyroid disease, diabetes type 1 and rheumatiod arthritis.

thought I would revive this rather than hijacking suedonim's thread ({http://www.mumsnet.com/Talk?topicid=29&threadid=139307&stamp=060124123828\here})

Well the time has come for my second set of bloods. I'm going to try and choose a time when the rash is at its worst as I still believe this is the key to the problem! I still can't see a direct link between gluten containing food and the way I'm feeling, (i.e. any sort of reaction isn't immediate) but I've read a few of the coeliac websites and it appears this may not happen anyway (I'm used to proper allergic reactions like my kids get!).

I really hope the GP takes me seriously this time. Even though my blood tests have got a certain GP's name on them, I'm going to try and go to another one so I get a different opinion.

Clark, when is your next biopsy due?

here

I've been wondering how you got on but couldn't find this thread for the life of me!!

aww thanks zephyr!

out of interest, have you ever been tested for it? I imagine with your family history, you probably keep an eye on any possible gluten reactions!

I haven't been tested but I plan to get around to it... especially as my Mum and her brother had it for so many years without knowing!! I watch out for dd and ds as well just in case it's skipped me!

Hiya foxinsocks - I don't know if you saw GMTV this morning, there was a lady on there who had been suffering from terrible rashes, feeling ill, run down etc and the allergy specialist got her to take all the wheat products out of her diet and she was feeling 100% better within 6 weeks. They said her story would be on the website but I can't find it, only \link{http://www.gm.tv/index.cfm?articleid=18631\this} but it might be worth a read through. Have you got any further with finding out about what yours might be?