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 - My Mum and my Uncle have both just been diagnosed with Coeliacs. They both have different symptoms though!! With my Mum, if she comes into contact with wheat or gluten she gets stomach ache, diahorrea, very lethargic, moody/feeling down. She has changed her diet but keeps getting caught out with things like make up. She does feel a million times better after changing her diet though and has loads of info so if you need any advice give me a shout.
My Uncle has been feeling poorly for around 10 years but they never tested him for coeliac. The way he has it is he has very low iron and is very tired and pale and skinny because his body couldn't digest what he was eating so he wasn't getting and vitamins or nutrients from his food so was basically malnourished. Since changing his diet he has put on a stone and the only effects he now gets is indigestion.

(my Mum had nausea too and it had been going on for months before she could get diagnosed)

thanks zephyr, that's really interesting.

What pissed me off was that the doctor implied I wasn't eating properly - I told her that I cook every meal I eat (almost every one from scratch), eat loads of fresh fruit and veg and wolf down loads of meat. Yet since the beginning of this year, I've managed to lose around 5kgs without doing anything, can't resolve the anaemia without taking supplements and am feeling generally quite crap (though have days when I feel completely fine).

She told me to take an iron and multivitamin supplement for 2 months and then go back and have another blood test because they can't ignore the fact that my white blood cell count was low (so she was sure it was a blip and another test will show it is normal)!

She has written 'test autoanitbody screen' on the blood test form for January so maybe this will pick it up?

or even autoantibody!

When I talk to my Mum next I'll ask her about it for you (She works at the docs!) She might be able to give some info that the docs won't

thanks for that - your poor uncle feeling ill for so long. He must have thought he was going mad.

Foxinsocks my cousin has coeliac disease diagnosed as an adult, and her main symptoms were feeling very tired and losing weight.

I have recently had some investigations (well still on-going actually) and I ended up being referred to an immunologist and had loads of things tested for, blood tests and patch tests (for allergies). The only test which was inconclusive was coeliac, and was told that often it has to be confirmed with a biopsy.

So I would definitely recommend if you are still feeling bad and your next test results still show signs of an autoimmune reaction, you do insist on seeing a specialist.

HTH

thanks frayedknot. I was wondering whether she could have picked it up in the first blood test but obviously it sounds like she would have had to ask for something specific (which is what I guess the 2nd lot in a few months time will be for).

It might be worthwhile trying in the meantime cutting out wheat and/or gluten just to see if you start to feel any better in yourself. It took quite a long time for my Mum and Uncle to get their referrals for a biopsy (2/3 months i think)

Hi Foxinsocks, my dh is coeliac and coincidentally I'm having a blood test for it next week, since I'm clearly intolerant of wheat - basically have a strong reaction a bit like Zephyrcat's mum after eating it. My GP has written on the form:
under additional tests - 1 antigliadin, other coeliac markers; and, under relevant clinical details - exclude coeliac.

Dh didn't actually have typical symptoms, but had very itchy skin occasionally plus mouth ulcer-type problems; he got tested because his brother is coeliac. The biopsy was necessary in his case as the blood test was inconclusive. In fact the GP he saw was a bit reluctant to refer him on the basis of the blood test - yet the biopsy was very clear.

Sounds like you'll have to push to get properly tested. I went in to my GP determined not to take any nonsense; fortunately, however, she didn't give me any. Anything else, just ask

Just re Z's last post - make sure you're eating a normal diet, including gluten, for a week before you have a blood test for coeliac; otherwise you won't have gluten in your system when you're tested IYSWIM.

I was going to cut out wheat to see what would happen but also read that it can take months to feel 100% better so I might as well carry on regardless until the next test.

In fact, I was thinking of deliberately eating stuff with gluten in to see if it made me feel any worse!

In 2 months time, when I have the blood done, all I do is turn up at our minor incident clinic and they do the blood test - I guess they can't add coeliac markers onto the test form? I'm not sure if 'autoantibody screen' covers the coeliac stuff or not. I suppose I should go back and ask the GP to add it to the form.

thanks for everyone's help by the way.

I would get it added to the form. I think we were told that it's quite an expensive test, that's why they baulk at it.

oh I see. That makes sense actually - she seemed quite pissed off that I would have to have another blood test (because they can't just dismiss the low white blood cell count without another test to check that it's recovered) so I'll probably be the least popular patient when I ask for other stuff to be added! Even though I am hardly ever ill, I've already been made to feel like a hyperchondriac.

I might just do a few home test examples with lots of gluten to see if it makes me any worse before I tell her my theory. I still can't believe that she had never seen my rash though - especially as coeliac disease is apparently not as rare as it used to be.

TBH, being a known coeliac is a bit of a trial for GPs too - you can get loads of gluten-free food on prescription and they have to get their heads round that.

However, the test is justified because:
a) Undiagnosed coeliacs who keep eating gluten can go on to have serious health problems
b) A strictly gluten-free diet, which is essential for coeliacs, is technically quite tricky to follow - so you wouldn't want to do it if you weren't actually coeliac. Going wheat-free is easier, and I get the impression that wheat-intolerant people can be more relaxed about the whole thing. (For example, in our house dh has his own toaster, butter/butter dish, bread board, etc - no contamination allowed.)

oh my goodness fauve, what a trial! Do your children show any signs of it (I have read that it has quite a lot to do with genetics?).

To be honest, it would be great if it was just a virus but I just don't believe that it is. Also, the coeliac bit would explain why I am persistently anaemic despite having courses of iron (it seems to recover then slowly deplete again) - it would also explain the tiredness. I just want to get to the bottom of it all really and if this is a possibility, then I want it ruled out.

Fauve is right - undetected it can have quite serious long term effects - with my uncle he hasn't been absorbing and vitamins/minerals into his system, with my Mum it's her intestines. All the time she has been eating wheat and gluten her system has been unable to deal with it so the villi (little fingers inside your intestines that break down food) get damaged and the intestines become damaged and scarred - it is however reversible by changing diet. Mum has to be totally wheat and gluten free and it is an absolute nightmare!! Even gluten in make up and lipsticks make her ill!

Me and my sister have no signs yet but it's often not detected until later on. My Uncle's dd is 5 and tested negative for coeliac but has exzema and tummy aches which cleared up as soon as she tried a wheat free diet.

I didn't realise gluten was in so much.

practically everything!!!!

We hope the kids won't have it - breastfeeding cuts the risk by a big percentage, and they were both breastfed, unlike dh and his brother. We've been told not to get them tested since they appear to be symptom-free, although I guess if I do have it, then that might change. I don't really understand about their risk as yet.

Foxinsocks - my mum has coeliac diease, and was diagnosed by a dermatologist for **s sake, when she saw the appalling rash my mum had on her scalp, shoulders and knee. This is while she was being investigated for cnacers because her weight loss was so bad: they even threatened her with dripfeeding because she was terribly aenemic and the hospital said she clearly wasn't feeding herself properly (aged 62)!. Like you, she was eating properly and carefully. It can take up to 15 years to develop according to her consultant, but often has a sudden and catstrophic appearance when the body is stressed (in her case, probably post surgery). The rash was terribly itchy. Its called something like dermatitis herptoformia and is very obvious to a dermatologist. HTH

sorry about spelling - in a hurry!

Fauve, as a matter of interest, what mouth ulcer problem did your dh have? Was it lichen planus by any chance (ulcerating patches that are autoimmune)?