Anyone experience with coeliac? And potential other causes.

[Justwingingitox]

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!

Coeliac disease can cause mineral and vitamin deficiencies as the intestinal lining is damaged, meaning you can't absorb the nutrients you need from food. This damage can also cause dairy intolerance. So anaemia, low phosphate and low potassium can all be caused by damage from coeliac disease.

This is very interesting. Thank you for replying. And I apologise if I'm sounding absolutely clueless - because I am just that, clueless 🥴 and I don't like to do a Dr Google. X

Everyday with every meal just seems so extreme for me. Because I could easily go a day without eating a slice of bread or a bowl of pasta

I don't understand why you wouldn't just follow the doctor's advice and eat the amount of gluten you've been advised to eat. That is the standard advice for anyone having a coeliac test. It may be more than you normally eat, but why does that matter? It's only for a relatively short time and it's for an important purpose.

Coeliac disease can cause very serious health problems further down the line, just as much in people who currently have mild or minimal day-to-day symptoms as in those who have debilitating symptoms. If you have coeliac disease, you have to cut out gluten to the point of avoiding any possible cross-contamination, going as far as e.g. not using butter that someone's got a couple of breadcrumbs into.

I've suspected I have coeliac for the past couple of years. I quit gluten, then went back on it to get tested. I tested negative, maybe because I didn't go back on it for long enough. I'm going to try again and get re-tested.

Why wouldn't you Google?

It's not that I wasn't going to follow the advice. I was genuinely confused and curious in regards to being given two different ways to go about gluten intake leading up to the test, so i wanted to know other peoples experiences and opinions/advice. Which has all in all, helped clarify the 2nd GP being correct and the 1st being not 100% clear on advice and what everythings about. If this had been told and explained to me the first time maybe I then wouldn't still be as clueless as I was a month ago.
In regards to the amount of gluten, it's not a big deal as such.. I just personally know I struggle on what I can manage and do eat as it is, so if it is gluten, and upping it like needed then it will be a shock to my system and potentially make me even worse than I already am. But that's what I need to do, so I'm doing it and have started doing it.
Whether other people can understand this isn't a problem, I know not everyone will see where I'm coming from.

Good luck with your re-test and thanks for the reply.

And I don't tend to Google much when it comes to health.. because I struggle with slight health anxiety from past medical traumas.

I don’t think googling helps always. People react to the gluten in different ways.
DD is only low in iron that we know. But problems with thyroid is also common so they keep an eye on that too.

I didn’t realise that I have had an under active thyroid for years too.

Coeliac UK is the place to go for information - both on the diagnosis process and how to manage gluten free diets if needed.

No googling doesn't always help.
Thank you for your reply, I'll keep that in mind xx

Ah well there you go, this could all be linked for you! Xx

I was having a good read on there last night - very daunting but I'll focus more once this test is out the way. Thank you x

Your doctor is right that you need to have consumed sufficient gluten for the test to work properly. This might sound weird but what do you eat? Surely not just vegetables and meat? If you don’t want bread and pasta you can have bulgar wheat or other grainy stuff as long as it’s not quinoa, biscuits, crackers, cake. Vegetarian meat alternatives are quite often made of gluten. I’m trying to think of all the things I can’t eat now haha.

Haha it doesn't sound weird. I know what I'm saying may not make sense to some. I'm just not a massive lover of pasta, bread etc. I do and will eat it just not every meal or if there are other options I'll have that. If I'm making a pasta dish or something for my children I'll sit down and eat it with them for the sake of the children. I love my salad bowls, with some meat in or whatever. Fish, meat, a variety of your normal crap here and there lol. Tbh I'm quite a fussy eater. Getting better though!
I suppose it's just about adjusting if that's what is needed, I'm sure I'll be fine, it's just all a bit overwhelming and overload. I'm on day 2 and I feel rank from yesterday and nausea still.
How long have you been GF? X

I don’t think googling helps always. People react to the gluten in different ways.

They do, that's true. But tbh I've so far found Google more use than the gp.

I'm glad google can be of help to you. But for some it can trigger massive anxiety.

True, but you're probably going to find out the same things asking on MN as you will by googling - i.e. that untreated coeliac disease can have very serious health effects (including osteoporosis and an increased risk of bowel cancer, among other things) and that you can get tested, but you need to have been eating a significant amount of gluten at least twice a day for six weeks before the test.

At the end of the day, either you have it or you don't, but if a doctor has suggested it as a strong possibility, imo it would be very foolish not to follow their advice about being tested, given the potential health problems from having it and not knowing

I haven't once stated, as I said previously, that I wasn't contemplating NOT doing as advised. I was merely asking a question due to two GPs conflicting advice. ☺️

Thanks again.

Do people experience rashes with celiac disease?

I have GI issues - diverticolosis and diverticulitis. I have a rash on my neck and chest. It doesn't look like a lupus rash. In my mind I am suspecting maybe it's connected to my belly issues.

I am wondering maybe if it's gluten.

I haven't a clue.

I haven't experienced any kind of rash - that's probably one symptom I haven't had haha. But I also haven't heard of anyone who has had a rash that I know of with Coeliac.
My friend has Chrons and get really bad mouth ulcers. That's about it. Hope someone can maybe shed some more light on that for you x

DD is coeliac. The GPS were useless - one told us to cut out gluten just so we could reintroduce it for the tests. Luvkily Coeliac UK have some helpful advice on their website. She needed to eat the equivalent of two slices of bread a day for 6 weeks but she hated bread so she had a bowl of gluten cereal most mornings and biscuits in the afternoon. Sometimes pasta or pizza for tea. She was 8. It was worth doing it properly because now she is healthy and has no lingering symptoms.

There is a form of coeliac disease associated with a rash - Dermatitis herpetiformis

It just makes it all a bit more of a daff when the GPS are none the wiser about advice and what to do doesn't it.
I definitely felt as though before this - it wasn't Coeliac. But I'm day 4 or 5, one or the other and I'm feeling rotten! I had duck last night with the pancakes - I was bad before the pancakes but the pancakes have sent me over the edge this morning x

I have a symptomatic GI issue where I am prone to infections. My diagnosis was on a discharge paper of a day procedure at the hospital. It was left up to me to learn about the condition through Google and support groups. The condition has to be managed daily through diet and there wasn't one medical professional that sat me down and told me. Also if I neglect this condition there is a bag of complications attached to infections. I mean like, vets are more informative when you have a sick pet.

For my condition doctors usually recommend increasing fibre but I learned that there's a whole entire umbrella of changes and monitoring to do along with that. None of it ever explained to me by a medical professional.