Anyone with experience of celiac or Gluten free? I'm really struggling.

[OrlandoInTheWilderness]

'm new at all this and I could do with a few knowledgeable opinions...!
About 5 months ago I was living a normal life. I'd struggled with diarrhoea after eating for years which I put down to the after effects of gall bladder removal.
Then I started having extreme pain sometimes. Proper, full on agony, lasting about 2/3 hours. Gradually progressing to throwing up too. I spoke to the Doctor who suspected gluten intolerance so I removed it from my diet. That was 8 weeks ago and actually I have been well! The odd rumbling tummy after accidently nibbling the wrong pasta etc (It has taken a while to get my head around) but no diarrhoea and stupid things like my dry skin started vastly improving.

Last night my brother and I decided to have a takeaway. I'd read online that indian is normally GF and fine so I had a king prawn Korma and special fried rice and 1 poppadom. Last night I could feel pressure building under my ribs (I normally start by feeling uncomfortable and overly full). I went to bed, but woke up at half one in agony. Extreme pain followed for about 15 mins before I violently threw up. I've been fine today, had a very small lunch (1 Banana and ham GF roll.) and been ok. Stupidly had about a 5p piece of cookie before realising they weren't my GF ones but normal ones and I've just had agony for 2 hours again.

Quite simply I'm exhausted. My brother thinks I have celiac but I daren't reintroduce G to find out. I feel cross with myself but also worried in case it isn't Gluten but something seriously wrong as the pain is so extreme. I've had gall stones pass down my pancreatic duct, broken my back and had a child and this is worse than that!

Any experiences or kind words? Does it sound like Celiac or just GI?

If anyone is still reading I'm seriously impressed and very thankful!

Gluten intolerance definitely can cause those symptoms and if they've been improved since cutting out gluten that does point to an intolerance or coeliac disorder. Did you tell the indian takeaway that your food needed to be GF - they may have accidentally contaminated you e.g. poppadom fried in same oil as samosas, or soy sauce used in the special fried rice

If the worst symptoms have been after the takeaway (possible gluten contamination) and the cookie (definite gluten contamination) that also points to an intolerance.

The longer you go without any gluten at all the worse the reaction is likely to be if you do have some, as you havent built up any tolerance to it st all.

I hope you get to the bottom of it.

Sorry you feel unwell OP. See your GP and they’ll do blood tests for coeliac disease as a first stage of investigations. Reintroducing gluten to try and find out won’t help. Hope you get sorted.

Thanks. I'm just flat with it tbh. The pain is exhausting.
@CherryMaple the Doctor did run bloods but not for Celiac. At that point I had been GF for 2 weeks.

I don't even know what I want from this - I just feel so alone and tbh a bit scared by the violence of my reactions.

If coeliac disease is suspected you're not usually advised to cut gluten out as you need to be tested first and your body's reaction to gluten can only be tested if you are eating gluten in your diet.

Obviously something is wrong, but without a medical diagnosis no one can confirm it is coeliac.

Well basically you need to be eating it several times a day for testing to have a chance at being reliable. I'd given up gluten under my own steam in a desperate attempt to get better, so I reintroduced it for an 8 week "gluten challenge" before the test, and I've never been so ill in my life. I was grey, obviously on the loo the whole time, awake multiple times a night (on the loo). Crippling pain. Sweating. I Had to work from home most of the time, and went into work just one day a week, taking 6 Imodium just to get there. Nearly fainted and fell down the stairs at one point. That was a particular highlight

Looking back I can't believe how ill I was! So I do feel your pain.

They won't be able to diagnose you at this point unless you go back to eating it. If you don't want to do that, then you'll never really know, but you can stay well by fastidiously avoiding gluten - including cross contamination. If you cut out gluten religiously and remain unwell, then it's presumably not that that's causing the problem. Then you can look at other things.

Avoiding gluten can be hard, but it's easier the more practise you get. The coeliac society are helpful.

I would go back to gp and ask for gastro referral x

Thank you everyone. It's just nice to know I'm not alone!

Thank you everyone. It's just nice to know I'm not alone!

I have symptoms like you if I eat anything with gluten in. Add to that a vit d and iron deficiency caused by the GI issues and inflammation which causes extreme fatigue, memory fog and hair loss. What a joy.
My Dr suggested the FODMAP exclusion diet while I was waiting for blood tests but because it excludes gluten the blood test for coeliac was inconclusive and I refuse to eat it again to get a true reflection.
I find Buscopan tablets helpful if I accidentally eat any.

I'd ask for a referall to Gastoenterology, they will do an endoscopy and tell you for sure whats going on.
I was supposed to eat gluten for two weeks before the endoscopy, but only did it for the weekend. Big mac and toast for breakfast, the stomach takes ages to go back to normal so they could see right away the villi were flat as pancakes and the biopsy said Coeliacs too.
Join Coeliac UK and download the app, it's my life saver when shopping. Lockdown has been good, I haven't swelled like I'm fit to burst in three months, still getting sore gums regularly though.

Your GP really should have ordered the blood tests for coeliac before suggesting you remove gluten from your diet. The only way to get a proper diagnosis will be to reintroduce it.

Also, just to say that when I was first diagnosed and my intestines were falling to pieces, any large rich meal would aggravate it regardless of whether or not it contained gluten. So if it is coeliac then if you eat very carefully and healthily for a while then things should improve. Another thing to note is that dairy intolerance often coexists with coeliac and will sometimes resolve after some time on the GF diet.

One last thing! I lived in America for a while a few years back. Despite being very careful on the GF front something made me terribly ill there. I know their labelling is not as good as in Europe. I followed the low FODMAP diet for a while (as mentioned above - it is strict though) and that helped a lot. And I felt completely better once back in the UK.

I too am amazed that your GP discussed this with you, and didn’t take bloods before you cut out gluten? Did he tell you to stay on gluten for he time being?
What you have done is very common. I’ve seen people in here regularly telling people to “try going gluten free”.
And you are proof this is not a good idea. Testing for coeliac needs to be done under medical supervision if you want a proper diagnosis.
My friend did what you did and has never had a proper diagnosis as a result.
Just avoid the gluten now, and presume you are intolerant.

Thank you everyone, some interesting points there! I'll speak to the doctor on Monday.

I just wanted to reiterate the fact that you shouldn’t cut out gluten or you might not get an accurate diagnosis. I’m coeliac and I eat Indian takeaways often; it doesn’t sound like there was any gluten in what you ate but it could have been cross contaminated. Hope you get a diagnosis soon, either way.

My mum is coeliac and as others have said, if your GP suspects coeliac disease then you should not be cutting it out of your diet until you've had a blood test to diagnose first. Good luck OP.

If you have severe coeliac disease I understand it can still be detected on bloods even if you have cut out gluten.

As an aside, my DD had bloods, came back coeliac, then was told by the GP to cut out gluten. It meant she never got the biopsy (because you have to be eating gluten) so her diagnosis is incomplete even tho all the medics agree she has coeliac disease. She should have carried on eating gluten and I should’ve hassled for a biopsy ASAP. We had no idea. We were just glad she was so much better without the gluten, but it’s very irritating that she has no formal diagnosis without the biopsy.

@AllAboutHallowsEve You need to carry on eating gluten til after the gut biopsy, not just the bloods unfortunately.

I was told to cut all gluten/wheat out instantly by my gastro consultant and only had to eat it once a day for the 2 weeks leading up to endoscopy and colonoscopy. Indian food isn't all gluten free, found out the hard way.. always ask when eating out, it's a common problem these days and most places are really accommodating for GF diets now, years ago eating out or takeaways were impossible!

You sound more severe than just GI. My DD2 has GI - she can eat Indian takeaways and soy sauce, but normal bread and pasta are a no. Agony and hours on the loo - oh, absolutely, but only if she has eaten a significant amount of gluten or is under extreme stress (in which case anything can trigger it).

I would get a referral and have it investigated properly in your case. If you want recipes for really nice fully gluten free baked goods, pm me - we have been gluten free baking for 4 years now. It's so much nicer (and cheaper) than bought.

Oooh yes please@pointythings! I'll pm you. I love baking!

Cherry- I seem to remember reading somewhere that children could be fully diagnosed from blood test alone? How old is she?

I didn't bother with the test. No way I'm putting myself through that to prove something I already know. It's been about 8 years now.

I have had crazy times where I've either thought I'll risk a bit or cross contamination at a restaurant or someone's house and it's horrific. It's much easier to sustain now as there's nearly always a gluten-free option.
I refuse to cook gluten in my house, my husband occasionally buys some for himself but he's very careful and mostly sticks to a gf diet at home nowadays a as he's seen how ill I get.

One thing to note you may also be reacting to dairy and oats - even gluten free oats. I'd advise you get in the habit of obsessively checking labels and asking at restaurants. Never assume it's gluten free. You'll be shocked at some of the shit they put wheat in!

Going gluten-free changed my life completely in many ways asides from sorting my bowels out from my menstrual cycle to my energy levels and reduction in anxiety. I also lost a shit ton of weight without trying and got rid of unexplained aches and pains. It's worth sticking too although it's a complete inconvenience I promise it's worth it. Good luck and welcome to the club!

@OrlandoInTheWilderness I have sent you a bunch of baking related PMs.

@BrutusMcDogface Thanks Brutus. She’s 16. Had bloods a year ago. She’s had a genetic test and two other bloods. District general hospital referred her to the nearest teaching hospital. Her bloods aren’t borderline, but they said to diagnose without a biopsy she’s have to be ten times over the threshold level - and her bloods aren’t high enough. For a biopsy, she’d have to restart eating gluten for 3 months - there’s no way she can do that. Although having a formal diagnosis wouldn’t gain anything in terms of additional treatment, etc, it’s irritating that the medics all agree she’s coeliac based on the bloods and presentation, but she’s not got an official diagnosis. (The GP should have told her to carry on eating gluten and rapidly referred her for a biopsy.) In some areas, a formal diagnosis gets you GF food on prescription, and is also a passport to a free flu jab. Neither of those are worth 3 hellish months of gluten eating...

Thank you @pointythings! I'll have a gander tonight.

Thank you everyone for your advice and support.