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!

How are you OP? Had my long awaited gastro appointment yesterday which was a total waste of time. Background been anaemic for over two years (I am past menopause). Had recent bouts of severe stomach pains. Double camera inspection suggested coeliac but GP blood test came back inconclusive. The gastro doctor said I now have to have a genetic test done (but he wasn’t sure how to book or arrange one for me). So he was going to look into it and see me again after this. meanwhile if I wanted to I can have a try at cutting out gluten from my diet as it won’t affect the genetic test. Its like the left hand doesn’t know what the right hand is doing and everything takes so long to get any results back and then to see a doctor.

I've had a name change - but it's me 😊

Bless you @RitaSueandBobtwo. What an absolute faff. This might be self explanatory with the test name but what does the genetic test do and what is it for? Are you just going to go for it and cut gluten out and permanently? Will they be getting you to do another one? I'm just thinking if you cut it out, and then asked to reintroduce for another test - and it is gluten, it's going to cause you havoc.
I'm 1 week in to upping my gluten and I've had periods of extreme bloating, left side pain, today my bowels are at the really loose side of things, nausea and sickness. Last night I actually really struggled to eat pasta, not managing more than 5 or so mouthfuls. I'm not sure if it can have that effect on you?! But I've been good and having it in every meal as asked, and sometimes in-between.
I've got bloods next Monday (19th) and fingers crossed that'll come back with some sort of answer if anything. If it comes back neg - I'll feel extremely deflated.
One thing I have read is it is usually 6 weeks in the run up for the gluten test so will 2 weeks be enough to get an accurate result? I don't know anymore. 🙃😫 xx

I'm going to add to my post in hope someone has experienced this maybe as a symptom or dealing of Coeliac.. in the last 2/3 days I've experienced extreme muscle pain, in my legs and noticeably more in my left upper thigh, pain radiating front and back. Last night I experienced numbness in both legs for a little amount of time but was sure enough there when I got into bed. But it's the thigh/muscle pain I'm struggling with - I can't walk right on that leg - and it's given way a couple of times this morning which isn't ideal with this snowy and icy weather here. Nothing has changed lifestyle wise other than the look into potential coeliac and upping my gluten for the last week in which I am experiencing my usual symptoms slightly worse anyway. And I haven't done anything out of the ordinary to cause injury. Can anyone link the two with any experience themselves?

Genetic testing can be helpful - if you are negative, it is unlikely to be coeliac disease. However being positive does not mean you have the disease - just that you are at risk of developing it at some point. So helpful in ruling things out, rather than diagnostic.

Re the new symptoms - if your gut is damaged due to gluten, your absorption of essential vitamins and minerals can be reduced and it is therefore possible that you are becoming deficient in things such as vitamin D or iron. It is worth asking the GP to run tests if you continue to suffer.

Thank you!
I have an appt booked in to discuss recent coeliac test and other bloods that I've recently had done again also. 😊

It is also worth knowing that the TTG test does not work properly if you are IgA deficient as it is looking for IgA - antibodies. So while a positive is positive, a negative is not necessarily so. This is where the genetic tests can be useful. There are also alternative options is you are known to be IgA deficient.

Does anyone know if a positive blood test for coeliac means you definitely have it? My dd tested positive this week, waiting for dr follow up to see what happens next. From what I have gathered it looks like it’s highly accurate but wondered if anyone knew any better. Thanks.

Generally yes, although there are a few cases where it is caused by something else www.southtees.nhs.uk/services/pathology/tests/tissue-transglutaminase-antibody-ttg/

From what I've been told. Most likely yes. But as pp said, could be potentially caused by something else.

My son, now 25, was diagnosed at 18. As a child he was very emotionally reactive. He couldn’t shrug off teasing at school and became upset and angry.

I wondered whether the coeliac disease caused the same reactivity in anyone else? I always feel bad we didn’t get him diagnosed younger but he didn’t have major gastric disturbances and we just thought he was a skinny child like his sister and as both of us had been in childhood.

I am coeliac and when I had my daughter tested, was told to give her gluten three times a day for three months!

@handmademitlove & @Sameshitdifferentdayx thank you, that’s helpful to know.

@Abra1t i have been doing lots of reading today about it and it can certainly cause depression / anxiety, particularly in teens it seems, so it could explain some of his feelings. I also read symptoms are often less gastrointestinal in teens and often show in other ways so often harder to detect.

That’s interesting, thank you @Buckland123

@Abra1t we definitely saw a huge decrease in DDs emotional outbursts after she was diagnosed and stopped eating gluten. So much less reactive. I then read about a link between your gut and your brain and it all made sense.

It also clearly affects DD's emotions if she is now glutened accidentally.

I think my son is calmer now but of course he is older too.

Update - 2nd test for Coeliac come back neg.
Though bloods are now coming back that I'm "largely in the grey area" for Vitamin D deficiency..
He has referred me to specialist but preached about going private as I could be waiting months. At the moment this isn't something I'm able to do financially though. Anyone have any experience with any sort of gastro issues such as IBD and lack of vitamin D? 2 neg coeliac tests, so do I take this as a "definitely not Coeliac" ?! Confused. It's been dragging on so long!! Xx

If you are antibody deficient then it could still be coeliac. Ask your dr if they checked for antibody deficiency. If not, an endoscopy would confirm any bowel disorders.

I'm having similar issues op. Home test showed a faint positive. Gp test negative but have high iga. Due to go back to discuss in a couple of weeks

Thank you. I was meant to ask this! Completely forgot. Having a read though regarding this and funnily enough I have recurrent pneumonia since 2014! A consultant questioned as to why this was once as to whether there was an underlying cause but it was never looked in to properly. Noted and will give them a call tomorrow to check. Thank you x

It's a complete ball ache getting the answers, it's a long run.
You think you're getting somewhere and then bam, back to square one.
And every time I have bloods there seems to be something new I'm low in or lacking of 😂🙃 I hope you find some answers soon!! Keep me updated. I don't think I'm going to have another update until the specialist now. So could be months! Xx

@Sameshitdifferentdayx very apt username!!