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Original poster

Anyone experience with coeliac? And potential other causes.

98 replies

Justwingingitox · 05/12/2022 13:02

It's long winded so I'm going to cut this short..

Saw GP about a month ago I think, had 3 stool tests, routine bloods done to test for Coeliac, signs of IBD etc.
The only thing that come back slightly lower than they'd like was my potassium and phostate, as told to repeat again in 2 weeks time. They were repeated. Was told I need to speak to a GP regarding the 2nd lot of results. Had to wait 2 weeks to get a phone call from a GP - this was this morning.
Now the first GP I saw said to not cut gluten out completely as it will affect the Coeliac test.. but just carry on as normal. Now I'm not a massive fan of pasta, I'll have it once a week with a meal I cook or whatever, i don't NOT eat it. Bread, not necessarily daily but every other day if not every day. Over the course of the weekend I had toast, crumpets, bread with soup.. it's not like I'm not eating it.
The 2nd GP I spoke to today asked if I eat gluten such as bread and pasta, I said I eat them both just not necessarily every single day and every meal. He then proceeded to ask why this was and told me I need to eat/have either bread or pasta in every meal I have every day for 2 weeks for the coeliac test to come back with definite results?!
He said I need a referral to a specalist as still having ongoing problems and bloods still aren't up to expectations - also a couple of results on the lower end of "normal". He has requested more bloods in 2 weeks time once I have done this and told me this was serious and I need to do this.
To me I don't believe I have Coeliac disease - if im wrong I admit it.. I have many other triggers food wise and drink wise that cause major upset to my stomach and bowels, I haven't noticed gluten to be one tbh.
I just feel like a sodding child that's been told off even though I've done as asked the first time around, I also feel like a bit of bread or pasta with EVERY meal I have for 2 weeks is a LOT. Am I wrong here?
Did anyone else have to have this much gluten before a coeliac test instead of carrying on as normal with your normal diet?
Completely baffled by it tbh. I also feel like this is going to be another long 2 weeks waiting around for answers.

Symptoms -
Pain in upper tummy after full meals.
Extreme wind.
Ranging from constipation to soft stools - mainly soft tbh.
Nausea.
Sickness.
Left side pain radiating down to my pelvic area.
Weight loss - though slower than it originally was.
My stomach basically talks to me an hour or so after eating full meals mainly. Big roars and weird noises.

Any help or advice welcome!

OP posts:
IaminRome · 05/12/2022 15:25

Also worth saying - you get a flu jab and COVID boosters with coeliac, so might be worth having it on your records

Original poster
Justwingingitox · 05/12/2022 16:12

RitaSueandBobtwo · 05/12/2022 14:08

I feel your pain. I have been anaemic for two years and waited over a year for a colonoscopy appointment (as I am past Menopause age). Anyway whilst waiting I had severe stomach pains (at one point I went to A&E as the pain was absolutely unbearable). I had bloods done and they found anti inflammatory markers so they also did an ultrasound the following day and I had a cyst in my liver (I also have one in my ovaries). Anyway I had a double camera inspection and the results after about 9 weeks wait suggested I am likely coeliac. So two weeks later I had a coeliac test done at GP’s. No one had discussed coeliac with me but by coincidence I had reduced my carb/bread intake and no one told me about eating two slices a day but I looked up online and upped my bread intake again about a week before the test. The blood test came back inconclusive and I am waiting to see gastro again next week. With me I think its maybe IBS rather than coeliac as I am under a lot of stress at the moment.

What a nightmare. I hope you really get some answers too. It's not the most pleasant thing with the symptoms that come with it all to be dealing with is it.
Feels like a never ending circle! Thank you for sharing your experience x

OP posts:
Original poster
Justwingingitox · 05/12/2022 16:17

JoanDarc · 05/12/2022 14:29

Op, I’m coeliac, diagnosed after lots of symptoms both upper GI and bowel about 7 years ago. My two cousins (sisters) both were diagnosed within a year - one with no symptoms, one without. The consultant explained to me that gluten can have a cumulative effect in some people, so you’re not necessarily displaying symptoms based on a specific meal.
I’m going back to GP for further tests as despite being GF, I’ve still got extreme pain and wind after eating. I’m now at the point I’m delaying lunch if I have afternoon meetings to save multiple trips to the loo. It’s grim, I feel your pain.

Oh that's horrible, especially when having to delay meals. I certainly try to avoid foods or anything that I think will trigger it whilst I'm out and about because it's not pleasant.
I hope you get some answers soon.
The upper part of my tummy is where after eating I do feel the nausea and pain hitting to begin with. And I'm sure that's where abouts the grumbling noises come from an hour after eating too. It's a minefield!!! So many symptoms and causes 🤯xx

OP posts:
Original poster
Justwingingitox · 05/12/2022 16:28

IaminRome · 05/12/2022 15:22

It depends if you need the diagnosis to stick to the diet - if you're just happy to cut gluten out completely and never go back to it, read every label and take it seriously, you might not want to bother with the test.
However, I've found it really hard not to waver, especially at the beginning. So I would definitely recommend pumping yourself full of gluten, get the test done and then see the results.

I also think it's much worse to cut it out and then go back to it for tests months / years down the line, so I'd just get it all done now.

My GP and the endo specialist gave me completely different advise.

Gluten with every meal isn't that much - just cut out rice / potatoes and use pasta / cous cous / bread / crumpets / cake / pizza / noodles / cereal / beer as your main bit of carb.

Gluten is in wheat, barley, oats, rye - even in soy sauce. Once you start looking for it you might find it's easier to eat than you think

I'm definitely going to pump myself with gluten over the next two weeks. As of this afternoon. The thought of going GF if it this is, is daunting. The checking and cutting it out.. After 30 years of having it in my diet. 🥴 I don't think I could carry on with it in my diet if this is the cause as I can barely walk with the pain in causes in my left side sometimes.
Beer sounds amazing right now.. I could use this as a good excuse but I'll behave!
As you say it's in more than I realise. I just don't know a lot about it, because I haven't ever had to think about it or worry about it.
We shall soon see I suppose. Thank you for your advice/reply xx

OP posts:
RitaSueandBobtwo · 05/12/2022 17:04

Hope you get to the bottom of it OP. My pains are also in my left side but I haven’t been crippled up in pain since I stopped eating bread (which I absolutely love).

My pains were so bad I haven’t seen a GP for any dietary advice only A&E, ultrasound, one quick gastro appointment and camera inspection. No one has given me advice about eating gluten or not eating gluten and whether I will have further tests at the next appointment but the thought of eating bread and risking being in agony with severe cramping pain to the point where I was in tears and writhing around.

MarigoldPetals · 05/12/2022 17:07

www.coeliac.org.uk/home/?&&type=rfst&set=true#cookie-widget

Have a look here. Your GP is correct.

Original poster
Justwingingitox · 05/12/2022 17:32

RitaSueandBobtwo · 05/12/2022 17:04

Hope you get to the bottom of it OP. My pains are also in my left side but I haven’t been crippled up in pain since I stopped eating bread (which I absolutely love).

My pains were so bad I haven’t seen a GP for any dietary advice only A&E, ultrasound, one quick gastro appointment and camera inspection. No one has given me advice about eating gluten or not eating gluten and whether I will have further tests at the next appointment but the thought of eating bread and risking being in agony with severe cramping pain to the point where I was in tears and writhing around.

Thank you lovely.
Do you have the same reaction to pasta etc that you do bread?
I hope you also get some answers st your next appt x

OP posts:
Original poster
Justwingingitox · 05/12/2022 17:33

MarigoldPetals · 05/12/2022 17:07

www.coeliac.org.uk/home/?&&type=rfst&set=true#cookie-widget

Have a look here. Your GP is correct.

I knew one of the GPs were correct, it was just what one.. 😂 so conflicting.
Thank you x

OP posts:
MissSmiley · 05/12/2022 17:53

I was diagnosed ten years ago when I was 40, my antibody test came back negative for years then I got another horrible autoimmune disease so I was referred for the duodenal biopsies, I decided to have the genetic test for DQ2 or DQ8 before I had the endoscopy and this was positive so I went ahead and my biopsies showed classic coeliac damage. I mainly pushed to get tested because one of my children was having tummy troubles and they took him much more seriously when I had my diagnosis. As an aside those biopsies saved my life as they spotted a very rare cancer in my duodenum that I've since had major surgery to remove. I'm sero negative coeliac

MissSmiley · 05/12/2022 17:54

You can get gluten powder to sprinkle on whatever you're eating if you fancy that instead in order to up your amounts before the test

Turmerictolly · 05/12/2022 17:56

I had a lot of similar symptoms. I had a colonoscopy and an endoscopy and they found diverticuloses.

Schlaar · 05/12/2022 17:58

Symptoms can be variable. You can even be totally asymptomatic and still have coeliac. But you do need to be eating gluten for coeliac to be diagnosed, because they’re looking for signs of your body reacting to it. So the more you’re eating the more obvious the reaction will be.

Original poster
Justwingingitox · 05/12/2022 18:04

MissSmiley · 05/12/2022 17:53

I was diagnosed ten years ago when I was 40, my antibody test came back negative for years then I got another horrible autoimmune disease so I was referred for the duodenal biopsies, I decided to have the genetic test for DQ2 or DQ8 before I had the endoscopy and this was positive so I went ahead and my biopsies showed classic coeliac damage. I mainly pushed to get tested because one of my children was having tummy troubles and they took him much more seriously when I had my diagnosis. As an aside those biopsies saved my life as they spotted a very rare cancer in my duodenum that I've since had major surgery to remove. I'm sero negative coeliac

Thank you for sharing your experience. It sounds like you've been through a lot.. I'm glad you pushed and got the necessary investigations, as you say, it saved your life. Xx

OP posts:
Original poster
Justwingingitox · 05/12/2022 18:04

MissSmiley · 05/12/2022 17:54

You can get gluten powder to sprinkle on whatever you're eating if you fancy that instead in order to up your amounts before the test

Ohhh that's interesting, I'll look in to this. Thank you! X

OP posts:
Original poster
Justwingingitox · 05/12/2022 18:05

Turmerictolly · 05/12/2022 17:56

I had a lot of similar symptoms. I had a colonoscopy and an endoscopy and they found diverticuloses.

A few things have been mentioned but what you suffer from, hasn't. May be worth me keeping this in mind if this Coeliac malarkey is neg. Thank you x

OP posts:
RitaSueandBobtwo · 05/12/2022 18:09

@Justwingingitox mine is strange I can eat say a scone or a small piece of sour dough bread and be fine but when I started eating a couple of pieces of bread a day before coeliac blood test that was when the pain got really, really bad and intolerable.

Anyone know what sort of tests if any are likely at second gastro appointment (following double camera inspection and blood tests). I already have several autoimmune diseases. My main symptoms apart from anaemia are discomfort, severe pains, trapped wind, wind and really smelly bowel movements.

Original poster
Justwingingitox · 05/12/2022 18:11

Schlaar · 05/12/2022 17:58

Symptoms can be variable. You can even be totally asymptomatic and still have coeliac. But you do need to be eating gluten for coeliac to be diagnosed, because they’re looking for signs of your body reacting to it. So the more you’re eating the more obvious the reaction will be.

Well I've started off strong. I think 🤣😂 since 12pm I've had a tortilla wrap (worth noting I experienced nausea and bloating shortly after this but unsure whether this is from the coffee that upset me this morning, as that caused upset tummy).. a crumpet and I'm having ome made burgers for dinner.. in a bunch. Haha! I'm trying. Thank you. X

OP posts:
Original poster
Justwingingitox · 05/12/2022 18:30

RitaSueandBobtwo · 05/12/2022 18:09

@Justwingingitox mine is strange I can eat say a scone or a small piece of sour dough bread and be fine but when I started eating a couple of pieces of bread a day before coeliac blood test that was when the pain got really, really bad and intolerable.

Anyone know what sort of tests if any are likely at second gastro appointment (following double camera inspection and blood tests). I already have several autoimmune diseases. My main symptoms apart from anaemia are discomfort, severe pains, trapped wind, wind and really smelly bowel movements.

Isn't it weird?!
I suppose like some things - in small doses, it can be OK for some.
Interesting you mention anaemia too. I've always struggled with anaemia on and off .. though latest blood tests show my iron levels to be "normal" whether that's the lower or higher end I don't know, as stated in my post, some results are the lower end of "normal."
Does anaemia play a part in coeliac disease at all? As you can tell, I need to do some research. 🙃😂

OP posts:
RitaSueandBobtwo · 05/12/2022 18:38

Yes @Justwingingitox according to NHS symptoms are.

Anyone experience with coeliac? And potential other causes.
Original poster
Justwingingitox · 05/12/2022 18:43

RitaSueandBobtwo · 05/12/2022 18:38

Yes @Justwingingitox according to NHS symptoms are.

I mean I did read this as I was curious earlier and doing little research on coeliac and everything else surrounding it.. I seemed to of skimmed past that bit.🙃 thank you!! We will see what the next lot of bloods say! X

OP posts:
Original poster
Justwingingitox · 05/12/2022 19:31

Small update - I've had quite a bit more gluten as to what I'd normally have in a day (some days I can go without bread, pasta, basically small amounts of gluten!)

tonight I have eaten a chicken burger (crispy battered chicken) in a relatively big bun, with a small handful of homemade chips, about an hour or so ago, I now have an awful grumbling upper tummy, pain in the upper and left side and I feel horrendously sick, i can almost feel it sitting in my throat kinda feeling. 🙃 whether it's gluten or not.. who knows but this 2 weeks is going to be rough if it is!!

OP posts:
ginsparkles · 05/12/2022 20:33

Oh poor you @Justwingingitox ! Fingers crossed it's not a horrid couple of weeks.

RitaSueandBobtwo · 05/12/2022 20:52

Take care Op.

JubileeTrifle · 05/12/2022 20:58

I find GPs aren’t very knowledgeable about it really.
It’s worth finding out because there is a big difference between cutting out gluten and being coeliac - which sadly people don’t generally understand.
DD is coeliac and has a yearly lot of bloods done as there are other related issues to be looked for which they won’t necessarily do if you aren’t diagnosed

Original poster
Justwingingitox · 05/12/2022 21:06

JubileeTrifle · 05/12/2022 20:58

I find GPs aren’t very knowledgeable about it really.
It’s worth finding out because there is a big difference between cutting out gluten and being coeliac - which sadly people don’t generally understand.
DD is coeliac and has a yearly lot of bloods done as there are other related issues to be looked for which they won’t necessarily do if you aren’t diagnosed

Oh really? That's interesting. Thank you.

Between both GPs there has been a lot of uuming and arring, so I do agree in regards to the knowledge side of things personally, especially as they both gave different advice. I feel like I've been made to question my symptoms at times as if I'm making my symptoms up because initial tests come back fine minus the low results in the bloods. 🙄 definitely something going on and they do agree.. it's just what!
Do you know if low phostate and potassium can be caused by coeliac, or is something your DD has experienced, or lack of certain vitamins? That hasn't been made clear to me, I've just assumed that until now, but will mention it when I next speak to a GP.
Thank you for replying x

OP posts:
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