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People with coeliac, can being " glutened" be this bad?

(29 Posts)
l4k Sat 29-Sep-12 11:33:26

I have another thread with more details( had a funny turn while out shopping!)in case I forget anything !
I'll try to be brief, been gluten free for about 18 months because after a very strict low carb diet I found I couldn't eat bread or pasta or even oats without getting a washing machine action in my guts, then diarrhoea with mucous and occasionally some blood.
Long story short, had some chicken with a light dusting of something powdery on thurs evening and have had a painful, tender abdomen ever since. It feels inflated and hurts to touch. It even hurts when i stand up and when my bladder is full . I had a mucousy bowel movement thurs evening , then diarrhoea x2 yesterday morning.
Saw gp yesterday who is referring me to gastroentlogist and said he thinks it's coeliac.
What do you think? Is this what it feels like if you accidentally ingest gluten?
Please help.

fuzzpig Sat 29-Sep-12 11:38:46

DH has coeliac and yes that is exactly what happens if he accidentally eats gluten!

The problem you're facing now is the test. Unfortunately, because you've been gluten free for so long, a test will come back negative even if you are coeliac. This is because in coeliacs, gluten makes you produce antibodies - these are basically what cause a thick gut lining which make you have mucus in your poo <ick> (sorry I don't have a brilliant understanding of it)

So basically AFAIK you can't have an accurate test unless you start eating gluten for a while - you'll need to speak to a doctor about this, don't just do it yourself. The other option is just keeping your diet as it is and not bothering with a diagnosis, it depends if you'd benefit from the prescribed foods (DH gets bread and pasta free which is brilliant as we are very low income)

NK346f2849X127d8bca260 Sat 29-Sep-12 12:58:39

Sounds very similar to what happens to my adult ds when he has eaten some gluten by accident ( diagnosed coeliac at 16 months old)

If you are given tests you will have to eat a diet containing gluten for 6 weeks,
my youngest ds was tested last year.

MoreBeta Sat 29-Sep-12 13:03:32

Sounds very very familiar symptoms indeed. Could be gluten or lactose though.

Coeliac suferers can react badly to lactose because their gut is so damaged by gluten exposure over many years.

If I eat gluten I feel like I have had a very hard night on the town for about 2 days and bad bowels like you describe. Normally I react to lactose quicker though in about 2 hours.

Sometimes chicken and often oven ready chips have flour on them to make them crispy. Lactose is used in a lot of foods too and often milk powder or whey.

l4k Sat 29-Sep-12 13:52:12

thank you all.I'm not sure if they'll even bother doing the tests as my endocrinologist did a blood test last year for coeliac and it was negative.I'd been gluten free for around 5 months then.
I am wondering if Have a problem with milk too.
I just want to know whats causing this, I'm always getting belly pain but this hurts really bad.It's eased off a little bit since this morning though.
I know I've got a good pain tolerance but was struggling at 6-7 am.

Thumbwitch Sat 29-Sep-12 14:03:58

Does sound like it but even if you're not coeliac, gluten intolerance could still do that to you.

I have a friend who has a wheat intolerance (rather than gluten) and she came off wheat after being diagnosed. After a few weeks of improved health and guts, she was passing a baker and couldn't withstand the scent of fresh-baked bread so bought a half-baguette, went home and ate it all. She was so ill - her face and eyelids all swelled up, her throat swelled up (thankfully not closing completely) and her guts went ballistic.

It's like her body had been in low-grade whinge mode for years while she was eating wheat, breathed a massive sigh of relief when she gave it up and then went into full screaming meltdown when she ate it again. She hasn't done it again since.

If you are coeliac, then you can develop lactose intolerance as well from the gut damage. I take it you didn't have the bowel biopsy last time you were tested, because they make you go back on gluten for ~6w before having it to try to ensure that your gut demonstrates damage.

CMOTDibbler Sat 29-Sep-12 14:39:49

Yup, if I'm glutened then the consequences can be spectacular, and I'll be cold sweaty, shaking, massive cramps and then my guts blow out for a couple of days.
The lactose thing is common in newly diagnosed/non compliant coeliacs due to the villi damage, but most recover from it once strictly gf as the villi regrow and start making lactase again

MoreBeta Sat 29-Sep-12 20:27:57

l4k - I am non coleiac gluten intolerant and was very ill for years before I stopped eating gluten. My health drmatically improved in a matter of weeks. Unfortunatley, I have had all the standard coeliac tests which came back negative but luckily I found a brilliant consultant who is a world expert on non coelaic gluten intolerance and he says millions are suffering from undiagnosed non coeliac gluten intolerance.

I have seen videos of people with non coelaic gluten intolerance who have such severe health problems thay look like stroke victims.

I have osteopedia (low grade osteoperosis), skin, gut, neurological issues, low grade arthristis and chronic interstitial cystitis. Basicaly gluten makes my immune sstem attack my body. Don't give up and do keep pushing for a diagnosis. You should mention non coelaic gluten intolerance to your GP and get a referal to a specialist. Unfortunately many doctors simply are unaware of it or dismiss it if classic coeliac symptoms are absent.

Your possible 'milk' issues suggest gut damage too.

l4k Sun 30-Sep-12 09:05:59

Thanks for replying. I know I have a wheat intolerance at the least and I'm definitely getting more sensitive to it. I'm hoping I can at least have the genetic tests to see if I'm predisposed to coeliac.
I can't see how I'd ever be able to tolerate eating gluten on perpose for even 1 day!
My concern right now is my whole abdomen is still feeling inflated and painfully tender. This is since thurs pm. It hurts most first thing in the morning when laying down and then emptying my bladder. It's best just sitting, not moving.
I hope the gastroentlogist is good and I don't have to wait long.
Morebeta, where abouts is your doctor ?
I can't carry on like this that much I know. My 4kids and dh have spent their weekend looking after me but that's not fair. And my house is a tip. I need to be well.
Thanks again.

MoreBeta Sun 30-Sep-12 09:10:46

l4k - wheat intolerance and gluten intolerance are two entirely different things. You may 'think' you are wheat intolerant but actually you may be gluten intolerant as wheat contains gluten. On the other hand you may be gluten intolerant but not wheat intolerant (as is the case with me).

Gluten intolerance causes a chronic ongoing autoimmune response (eg like coeliac) but wheat intolerance is an allergic response (eg like nut allergy).

Hopeforever Sun 30-Sep-12 09:11:40

You may well be right about the coeliac, but I thought it might be worth telling you about my eldest dd who had similar symptoms, improved in giving up gluten but she was eventually diagnosed with endometriosis.

Worth a quick google, may be nothing to do with your symptoms, but rule it out

Thumbwitch Sun 30-Sep-12 09:31:48

Morebeta, that is rubbish about wheat intolerance being an allergic response, sorry. I AM wheat intolerant, without gut damage, and it is nothing like an allergy. The clue is in the name - an intolerance is NOT the same as an allergy.

l4k Sun 30-Sep-12 09:49:41

thumbwitch, how were you diagnosed with a wheat intolerance? I'm not sure if i'm wheat or gluten intolerant or have coeliac. I'm pretty sure it's not an allergic reaction anyway.

And hopeforever, I had a hysterectomy last year and things were stuck together that shouldn't have been so I know I have adhesions.But wouldn't they have said if it was endometriosis?(still have ovaries btw)

thanks to all for responding.

Thumbwitch Sun 30-Sep-12 10:13:32

I have never had an "official" diagnosis - I had, however, had bowel issues from since I was a baby, non-specific in many cases but by the time I hit 30 I had quite bad IBS - sudden intense cramping that saw me needing to find a loo Very Fast while shopping, that kind of thing, and general bowel disruption.
Wheat intolerance is quite a common trigger for this so I gave it up - never been happier! Took less than 2 weeks for the IBS symptoms to go away, and sundry other issues such as frequent migraine, acid reflux/indigestion, tiredness after eating, nausea after eating. All gone. Unless I have wheat - in which case they start to creep back - specifically the acid reflux and IBS, plus I get terribly puffy under my eyes. I don't usually get the sudden horrendous attacks that a coeliac would if exposed to a little bit of gluten; I can "get away with" a single biscuit sometimes but if I do it again a second day I'll pay for it.

I cannot be arsed to be tested, in all fairness - I doubt I would test positive but I am not putting myself through 6w of being back on the wheat (misery!) as it would have no actual benefit to me to "know" - what I already know is good enough for me.

Also, I never had a dairy problem, ever. Still don't. <phew>

While lactose intolerance is not entirely diagnostic, it does point to small bowel damage, because the lactase enzyme is produced in the small bowel by the brush border, which is destroyed with the villi by the autoimmune reaction to gluten that occurs in coeliac disease.

Gluten intolerance - well gluten is found in wheat, barley, rye and oats. The gluten molecule in the first 3 is quite similar, and the avenin in oats is rather different, hence some coeliacs can tolerate oats but others can't. So I suppose you could work it out by finding out if you can tolerate barley and rye but not wheat; or if all of them set you off.
As it happens, I steer clear of barley as well but generally of the malted variety - beer and whisky make me awfully ill, even just small amounts! grin

Hope that helps!

l4k Sun 30-Sep-12 10:30:36

Yes. It helps a lot. I've not tried barley or rye but I know I can't eat oats. Same reaction as wheat, gurgling stomach and guts, horrid smelling wind and then diarrhoea So does that point more to coeliac ? I've gotten so sensitive now that one mouthful of my ds2 sausage when cutting it up can cause these symptoms. I haven't eaten a biscuit for over 18 months and I bloody love biscuits!! (apart from gluten free but they are so full of sugar I can only have one and one is NEVER enough!!).
I bet I won't get an official diagnosis either, but it doesn't mean it's not true. Thank you.

Thumbwitch Sun 30-Sep-12 11:02:01

Morebeta - just had a thought - you weren't getting mixed up with the difference between lactose intolerance and cows' milk protein allergy, were you? Whenever I've seen you discuss this before, you've usually been pretty clued up about it so I was quite surprised to see your comment re. wheat intolerance - but then wondered if you had just mixed your grain and dairy up. Of course, you might not have.

l4k - it definitely suggests gluten rather than just wheat; but then again it might be wheat and oats and not gluten. You'd need to try the other 2 grains as well to be sure (if you can bear it!)

Lonecatwithkitten Sun 30-Sep-12 12:40:03

Oats are very often contaminated with wheat as they are usually grown on the same farm. Nairns do gluten free oats that have a guaranteed of no cross contamination so it maybe contamination is the problem.
Intolerances, allergies and coeliac are all immune mediated conditions, but their manifestations vary widely from individual to individual. Immune mediated disease is very, very complex and the wide sweeping statements that are being made up thread does not take this complexity into account.

MoreBeta Sun 30-Sep-12 16:46:37

Thumbwitch - I think you may be gluten intolerant and not wheat intolerant. Honestly I do.

My consultant has been very very careful in making sure I do not have a wheat allergy. I have had specific wheat allergy tests. My problem is only with gluten but I am not coeliac.

Reading your post makes me strongly feel you are in fact non coelaic gluten intolerant like me. Missing out wheat will of course eliminate gluten and the fact you have not been properly diagnosed like I wasn't for years make me even more convinced.

No I am not mixing dairy and lactose intolerance. I am a bicohemist by traning and my consultant is a world expert in non coeliac gluten intolerance. I have been through this in great detail with him.

It is very hard to diagnose and I was extremely ill for a long time. I have an autoimmune problem caused by gluten - it is not an allergy.

MoreBeta Sun 30-Sep-12 16:48:02

Lonecat - Sainsbury also now do pure gluten free oats which I can tolerate in their Freefrom range.

hellymelly Sun 30-Sep-12 16:59:35

I am in a similar position- if I eat gluten I get terrible tummy cramps, worse than labour by far, and then diarrhoea, for a few hours. I have auto-immune underactive thyroid, and other things linked to coeliac. I think I am probably coeliac but can't face six weeks of gluten. Am worried though as I am not uber vigilant about traces (other than with oats, where I am sometimes fine, sometimes not, so assume its a level of contamination issue as I'm fine with the gf ones). I eat things like chocolate that may have traces, which is not good for coeliacs so need to chat to my GP about it. Also should have dds tested if I am, so there's that reason for finding out too.

l4k Sun 30-Sep-12 18:36:33

hellymelly, I also have a pituitary condition which has autoimmune connections .It causes my thyroid to be underactive and also my adrenal glands too.
It's all so bloody complicated.
When I feel better I could try GF oats, rye and barley (all seperatley)

I've also wondered about having my dc tested.The youngest has a problem with milk,It gives him terrible excema (sp?).They are all good weights and heights though.

Thumbwitch Mon 01-Oct-12 00:26:04

OK morebeta, you're not mixing them up, just wrong about the wheat intolerance being like an allergy then. A wheat allergy would be like an allergy. The immunological response is different.

Thumbwitch Mon 01-Oct-12 00:26:57

I am also fine with oats, just as an aside.

l4k Mon 01-Oct-12 21:32:21

I've got an appointment with the gastroenterologist in the morning.I'm quite apprehensive. I hope we get somewhere.
But what if he just insists I eat bread for 6 weeks for a celiac test or bugger off ? Don't know what to think, I'll have to wait and see what he thinks.

hellymelly Mon 01-Oct-12 23:15:42

Good luck, keep us posted.

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