Negative Coeliac Results

[JGibbons]

Hi everyone,

I requested a coeliac screening from my diabetic team and the results came back negative. I still feel something isn't right but when asked for further advice it was brushed off and assured that I am not suffering from this.

Instead of exploring other conditions, I was told to contact my GP with my problems.

Has anyone had any experience with how to manage this?

I feel like my problems are ignored, if it doesn't end in the one specific diagnosis I have to start the whole process of trying to find what the problem is again. Almost as if I'm not a person who will continue to have these problems.

I have had Type 1 diabetes for 20 years, diagnosed with IBS. Suffer from joint clicking and aches and have what seems to be a bloated lower stomach, amongst other symptoms which are commonly associated with the coeliac.

Apologies for the long message, any advice or support would be greatly appreciated - I am struggling at the moment

 

[EK297]

The symptoms are quite vague - as it the case with many autoimmune (and other) conditions. The GP might be better placed to get you additional tests and, fingers crossed, a diagnosis.

I am under investigation for Lupus at the minute. It’s been a looooong process, and quite frustrating at times. I’ve ended up going private and have an appointment for next week. Could be an option worth exploring?

 

[JGibbons]

Thanks for the reply @EK297 , I haven't considered going private tbh.

I am currently at the stage of frustration where nothing seems to work and seemingly get passed from pillar to post. Whenever I contact the GP it's usually suggested to go through the Diabetes team and vice versa!

I'll have a look into this and good luck with everything, hope you find some answers to your problems!

 

[AndBreathe]

Hi everyone,

I requested a coeliac screening from my diabetic team and the results came back negative. I still feel something isn't right but when asked for further advice it was brushed off and assured that I am not suffering from this.

Instead of exploring other conditions, I was told to contact my GP with my problems.

Has anyone had any experience with how to manage this?

I feel like my problems are ignored, if it doesn't end in the one specific diagnosis I have to start the whole process of trying to find what the problem is again. Almost as if I'm not a person who will continue to have these problems.

I have had Type 1 diabetes for 20 years, diagnosed with IBS. Suffer from joint clicking and aches and have what seems to be a bloated lower stomach, amongst other symptoms which are commonly associated with the coeliac.

Apologies for the long message, any advice or support would be greatly appreciated - I am struggling at the moment

JGibbons, did you ensure you'd had plenty of gluten containing foods in the few weeks leading up to your screening (assume that was the antibody test)?

I'm not T1, but as a result of a consultation with an Endo a few years ago I was also screened (alongside a massive raft of other tests). I am a committed low carber, and hadn't eaten bread or pasta, or any of the common foodstuffs containing gluten for years, so it was highly unlikely to be positive. It wasn't.

Cutting to the chase, my Endo recommended a gluten-free diet in any case, as ".... people with auto-immune conditions tend to do well on it...."

Actually my digestive system did perk up a bit afterwards, so might be worth a whirl?

If you do decide to go for it, you need to go strictly G-F and need to stick with it for a number of MONTHS. That's how long it can take for some impacted folks to turn the corner.

 

[EK297]

Thanks for the reply @EK297 , I haven't considered going private tbh.

I am currently at the stage of frustration where nothing seems to work and seemingly get passed from pillar to post. Whenever I contact the GP it's usually suggested to go through the Diabetes team and vice versa!

I'll have a look into this and good luck with everything, hope you find some answers to your problems!

And you!

 

[becca59]

Since Christmas I too have had ongoing digestive issues. Though in the upper part not lower. Have been very lucky to have a raft of investigations and am waiting on the results of tests for gastroparesis.
I imagine like me you have done all sorts of research trying to come up with your own answer. I happened on lactose intolerance this week. I had always dismissed this as have never had problems in the past. However, it is something that happens as we age and our bodies lose the ability to deal with the lactose. Might be worth a read. Digestive problems are miserable enough aren’t they, but as a Type 1 trying to manage food with insulin life becomes quite a toil. You have my sympathies @JGibbons
Just to add I have never spoken to my diabetes team about any of this. All tests were activated (quickly) by my Gp, via phone consults, and I am now in the hands of the gastrointestinal department. Blood tests, organ scans, gastro tube into the stomach. Scans to show food passing through. Perhaps I am lucky enough to have a good Gp. But please don’t dismiss getting yours on board.

 

[MBlaik2021]

Sorry to hear you are struggling. Just to let you know the coeliac test is only reliable if you have been consistently and regularly consuming gluten (i.e. if you've been avoiding it recently or generally the results may not be accurate). Hopefully, you'll get the test as its good to know - a process of elimination!
IBS can be multifactorial and there may be other factors at play - pathogenic gut bacteria, dysbiosis which could be driving symptoms if gluten isn't the culprit. I hope you find some resolution soon.

[Moderator edit in alignment with forum rule.]

 

[MBlaik2021]

PS just re-read and saw you've already had negative coeliac test results. Again, depends if you had eliminated gluten already or whether you've been consuming it regularly. And a negative result doesn't mean that you don't have a sensitivity to gluten, it may not agree with you. Try eliminating as recommended by someone else on here, if symptoms don't improve, it may be something else entirely. You don't want to eliminate gluten containing wholegrains long-term without good reason - its limiting and they are a great source of fibre.

 

[CB67]

This is my first time posting and I’m not technically minded. Anything could happen!

Type 1 for over 50 years, coeliac for 20 years, lactose intolerant for 2.5 years.

Took a wild guess that I was lactose intolerant. I was experiencing symptoms very similar to the symptoms I had when I was diagnosed coeliac. The main symptom in both cases was bloating. I simply cut out the lactose completely, didn’t consult GP or diabetes nurse. Within days felt much better. Might take longer for others though. Did mention it to GP later who shrugged and said it goes with the territory, i.e. being coeliac etc. Have decided that I just have a sensitive digestive system and am really careful about what I eat.

So, @JGibbons, it could be lactose. It’s fairly easy to cut out for a few days, won’t do any damage and if it’s just for a few days you wouldn’t need medical permission, so to speak. I’d try that, if you haven’t already.

Also there’s something called gastroparesis, which is ‘delayed gastric emptying’ - stomach takes too long to empty its contents. Often occurs in people with type 1 or type 2. Happens when nerves to the stomach are damaged or stop working. You could try mentioning that to GP if it seems to fit.

Along with everything else, having a dodgy digestive system is annoying, tiring, frustrating. I hope you find some answers soon.

 

[JGibbons]

Hi everyone,

Apologies for not getting back to you all sooner. @AndBreathe @becca59 @CB67 thank you for the responses.

It just grinds you down a bit on top of life.

I had consumed gluten leading up to the tests but may consider cutting things like lactose out in somewhat of an elimination diet going forward.

A dreaded attempt at the GP seems to be the best answer, but it's hit and miss with what kind of response you receive, it just shovels it on top.

Suppose I'll just have to endeavour to find some answers, but it is super helpful to hear from people on this forum, from advice to words of encouragement.

Hope everyone is getting on ok!

 

[AndBreathe]

Hi everyone,

Apologies for not getting back to you all sooner. @AndBreathe @becca59 @CB67 thank you for the responses.

It just grinds you down a bit on top of life.

I had consumed gluten leading up to the tests but may consider cutting things like lactose out in somewhat of an elimination diet going forward.

A dreaded attempt at the GP seems to be the best answer, but it's hit and miss with what kind of response you receive, it just shovels it on top.

Suppose I'll just have to endeavour to find some answers, but it is super helpful to hear from people on this forum, from advice to words of encouragement.

Hope everyone is getting on ok!

JGibbons - I wish you well with your ongoing challenges.

I wonder if your approach as been quite targeted with your GP and/or Diabetes Team? Yjust tell him you have x, y z symptoms that are persistent ou talk about having requested tests for Coeliac and so on. Could it be worthwhile approaching GP/Diabetes Team (although personally, I would side with the GP) and describe your various symptoms, telling him/her these are running you down and ask for general help to resolve things.

What you describe - aside from the clicking joints - seem gastro related, so maybe your Diabetes Team could be a blind alley any way? I know it's difficult when we have done our own homework and firmly believe the issue is x, y or z, only to find we can't get the support for it.

Oftentimes our GPs in particular, don't like it when we feel we might have a bit of an insight, so perhaps a different form of GP management could be in plan?

(A couple of years ago I had a chat around this with a friend of ours who is a consultant opthalmologist. I was having a mega whinge about something. His response was along the lines of "but you're not the average patient. Few patients have a clue about anything. Few will have done any thinking, or carried out any research of made changes before a consultation and they are simply not used to engaging on an equal basis. The poor bloke is probably reeling."

He further went on to tell me that it had taken him a few years to realise this and a few years to welcome engaged patients and feel enriched by their challenges. Uni doesn't help them with any of that. It builds their confidence in the "fact" they know more than the other person in the room. To be challenged by someone well clued up can instil frank panic.