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!

I just realised I didn't cut this short. Sorry haha.

Also bloating as a symptom x

Yes, you are wrong about needing to eat plenty of gluten prior to the test, otherwise it won't be accurate. The GP was correct although their attitude sounds off. We were told the equivalent of two slices of bread, twice a day, for six weeks prior to the blood test. Then, if the blood test is positive, do not give up gluten until you've seen a consultant as they may want to do an endoscopy.

DD is coeliac. Be aware that coeliac disease often is closely linked with lactose intolerance.

I’m coeliac. I had two negative tests before I got my positive one.

The blood tests aren’t always accurate and you do need to be eating quite a bit of gluten - my GP said at least one meal with a decent serving of gluten per day I think.

I used to have intense stomach cramps, bloating, nausea, anxiety, gas, diahorrea. Every morning. And I thought everyone had this and I was just being a wimp.

Honestly though I didn’t think I had it and my mum is coeliac so I really should have known!

My DH is currently under investigation for coeliac disease. He carried on having gluten ahead of the blood test, which came back negative for coeliac. But after some extreme symptoms he has been told to remove it, but will have to add some back in before he has the endoscopy, however the wait for that is too long for him to suffer the whole time while he waits.

DD also has the same symptoms and has to follow a gluten free diet. The consultant and I have decided not to have her tested at this point, she is clearly intolerant, but neither he or nor I want to subject her to eating gluten for the tests.

It's possible to be to be no coeliac gluten intolerant.
Their symptoms are:
Bloating
Wind
Soft smelly stools
Brain fog and an inability to concentrate
Fatigue (extreme fatigue)
DD gets dots in front of her eyes and feels faint when she exercises
DD has low iron.
Sickness and a "whirly tummy"

All of these symptoms went after a few weeks of being gluten free and come back immediately if they accidentally eat gluten. DH was violently ill and was poorly (like flu) for several days after eating gluten recently.
Dd is lactose intolerant too, we don't know this about DH yet. We are in a steep learning curve.

Ehhh. It baffles me as to why I wasn't told this the first time around?! It's all very conflicting between the two GPs. 😫 it's exhausting.

I'm just beyond confused as to how much I should be eating. So if anything I've got to UP the amount I'm eating. 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 - but will be in other things I eat. I just wish this was told to me about a month ago when this all started!! Thank you xx

Because lots of GPs don't have the correct information, or don't look it up. It's hard to go through this but important to get the right diagnosis. The right diagnosis means you should be monitored for any vitamin deficiencies or bone density issues. For children it means their growth is also monitored regularly and a dietician is regularly involved.

Or, they can rule it out and look for another cause. A relative had coeliac ruled out but ulcerative colitis diagnosed, so they have different monitoring.

Thank you for replying.
Isn't it a complete whirlwind of emotions and feelings. I feel like it's too much for me to even get my head around with all the tests going on..
The GP this morning said he also wants to test other things that haven't been tested yet but all of which needs to be tested for the referral.
I'm just fed up and want answers. When doctors are conflicting in what they say and want done it's hard to get an understanding yourself.
I was also told to go private because it'll be quicker to get a diagnosis but I don't have the funds for that right now. 🙃
Sounds like you have it all going on too - xx

Have they done a stool test? Particularly for calprotectin as useful indicator in IBD (Crohn’s/ulcerative colitis). Quite a simple check to be done.

Word of warning. I had been off gluten for a while following positive blood test as part of investigations for lifelong anaemia. For first time in my life I wasn't living with low level stomach pains/issues. Then Dr asked me to get a biopsy for full diagnostics.

I did the eating loads of gluten as needed. Colleagues expressed concern at how poorly and pale I was looking as the weeks wore on. Then had a autoimmune response/disease on my retinas and lost 1/3 sight in left eye overnight. I'm convinced it was that gluntening that kicked it off.

Biopsy didn't even come back positive but I'm now off the gluten forever. Eyes need monitoring every 8 weeks at least forever now. And I'm on very strong drugs to control eye probs. Wish I'd just dumped the gluten the first time

UC or Chrons are what the 1st GP was certain on investigating more after the Coeliac tests came back the 1st time, even though stools at the time seemed OK. It's just she wasn't available to discuss the 2nd lot of bloods leading to this GPs opinions and decisions on the next steps.. to which he thinks it's more Coeliac.
Thank you for replying and for your time x

Yes and this come back OK at the time x

Oh bless you. This sounds awful!! I'm sorry you're now dealing with this, and ife long too. I never realised coeliac can be so debilitating to some.

I almost feel like it's gone on long enough - it took me a good year or so before it got worse to actually seek help from a GP. And I just feel like I should of carried on gritting my teeth and bearing it as I did before. I feel exhausted with all the tests and waiting around! I know it's to be expected but conflicting advice/opinions between doctors doesn't help and adds to it all.

Well you could think of it this way, a lot of people are really poorly ahead of being tested for celiac disease as they have to eat gluten. (I couldn't even eat it in order to be tested it made me so ill so I'm "classed as" rather than diagnosed as) so it's not too much of a hardship to eat it for a few weeks as you say, you don't feel it brings on your symptoms
I still had an endoscopy but of course it was inconclusive
I know if I eat it though I experience flashing lights/throw up which aren't classic symptoms either but I'm much better now I'm 100% gluten free.
I did get diagnosed with UC though but symptoms for that were erm dramatic!

@Justwingingitox DH has been told the consultant will be looking at other things like IBS etc at the same time too. He is currently taking buscapan and extra vitamins to help manage the symptoms. I suspect he will have to cut out lactose too as he felt a bit unwell after his beloved latte the other day.

I completely get this. I'm not against doing it for the benefit of potentially getting a diagnosis. It's just the conflicting advice and how to go about it from two different GPs that completely sent my head west.
Maybe it seems extreme amounts of gluten to me because as he stated "every meal, every day for 2 weeks" isn't what I'm used to. I struggle to eat a full meal of anything that's served on a plate without ending up in pain and nausea.. adding gluten in to every meal, every day will be a struggle, but as I said. I'll try my best!

Thank you for your reply.

I've heard just how bad UC can be, my friend suffers with this. I hope it's all under control for you x

I was advised buscapan too. Though I don't find it of much help when things are really bad.
Good to know other things are being looked at whilst under the consultant.
Coffee is also a flare up of mine.. I had a black coffee this morning and was sh*things through the eye of a needles within the hour, and now have stomach bloating and cramps! Joys x

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.

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.

@JoanDarc have you tried or spoken to your GP about lactose? My DD's consultant said a lot of people who are Gluten intolerant are also lactose intolerant. It maybe a lactose issue at lunch? DD gets a very upset tummy if she has a hot chocolate for example

@ginsparkles I didn’t know there was a link. To be honest I am not eating much in the way of lactose, wouldn’t normally have it at lunch but do have milk in coffee late morning so could be it.
I may try cutting it out this week to see if it makes a difference. Thanks

No problems. We use lactose free milk, or lactase tablets for DD.

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