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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

chronic liver disease ir celiac

42 replies

Terrifiedshakes · 29/07/2024 07:10

My Serum anti ttg levels came back elevated but the antibody test negative. I've googled and googled and it's coming back that with an elevated Serum anti ttg, if not celiac, then it could be the liver. I'm really stressed again. I'm not attention seeking, I'm just not well atm with health anxiety, I'm having a really bad time these last few months.

Now I'm worried again! I've never drank alcohol apart from the ODD night in my twenty ten years ago. I'm a very good BMI. Not had alcohol for years now.

I'm again freaking out. Again. And I go on holiday today.

The gp has refered me for a camera down the throat but only because I'm anxious. We sat together and decided if I wantedthe camera or not because ive got bo evert syproms of celiac. She refered me on the grounds of being anxious and needing reassurance and my maternal neice has celiac disease and my mum has rheumatoid arthritis. I'm not phased by having this camera. I'd do it myself if I could.

I've not got any symptoms of celiac, so it's got to be my liver thats the problem? But my liver blood results have come back in normal ranges so I'm just doing my own head in basically.

My symptoms are twitching muscles the odd pins and needles in feet and burning joints. But I'm a long distance runner so my burns could be that.

Please don't be liver diseases, damage. I need to snap out of this one for my DH and our family holiday. I can't go on holiday feeling like this again, it's not fair on him.

I did ask the GP if I'm not celiac then what do we do about my raised levels and she just shrugged and said not a lot really but I think she was just calming me down and thinking we will cross that bridge when we come to it and talk about your liver then. But she did say my liver results are in normal ranges.

It does help to talk on here.

OP posts:
Doggymummar · 29/07/2024 08:49

All my liver results have been off the charts for thirty years. I've had MRI, x-ray biopsies and there's nothing wrong with it. My consultant said it must be my normal. I no longer worry about it. I gave quarterly blood tests and if they change I have an investigation, it's exhausting but they never find anything.

Terrifiedshakes · 29/07/2024 08:52

Sorry doggy, that's so stressful for you to live with. The human body is amazing but a real pain.

OP posts:
Sosorryliver · 29/07/2024 08:53

Terrifiedshakes · 29/07/2024 08:44

I don't want a liver test. I don't want a scan. I don't want an MRI.

I want a doctor to explain to me results, what they mean, what they don't mean. The likelihood of things.

But I don't want any more tests. Or results. Or waiting for results. NHS or private. No more tests or letters or me having to look at the NHS app for results.

I just want to understand.

I think people think I want tests. I fucking do not. I can believe words if the person saying them knows what they are saying.

I don’t think gps are very good at breaking things down like that. Just that no further action needed. They have excluded most possibilities, they don’t give likelihoods in case they are wrong. I feel sure you could book an hour with a medical professional for them to properly break down your results.

Terrifiedshakes · 29/07/2024 09:04

Sosorryliver, have you got a poorly liver?

OP posts:
Ponoka7 · 29/07/2024 09:14

My liver results were worrying, it was the antibiotics and night nurse I'd been on. My friend gets an inflamed liver occasionally. As you age you'll need tests to keep you well. You need help, as said, for your anxiety. What are your salt levels like? Twitching muscles can be a lack of salt. Are you peri menopausal or have hormone issues? You've been lucky that you've been so well upto now.

Terrifiedshakes · 29/07/2024 09:17

Not peri. Magnesium, potasium, normal ranges. Not dehydrated. Good vit b12 and D.

I feel energised and can out run most men.

I'm 34. No skin complaints, swelling, pain. Good appetite. No weight loss.

Just anxiety and a shitty Anti Serum test result.

OP posts:
mindutopia · 29/07/2024 09:34

Definitely work on your anxiety, that’s the first thing.

Based on everything you’ve said, my guess would be this is either coeliac’s or something autoimmune. There really is nothing to indicate it’s your liver.

Even if it is, so what? I think you are catastrophising something that actually isn’t a big deal. I have a damaged pancreas. It doesn’t work anymore, diagnosed at 40 after largely no health issues ever prior. I am on meds to manage it for life. You know what? I hardly even think about it. I take my tablets (about 6 a day) and get on with life. My life is completely normal 95% of the time. I will have a completely normal life expectancy, even with a pancreas that has gone totally tits up. It’s fine. Doesn’t really have any impact on my life other than having to remember my repeat prescription.

BananaLamah · 29/07/2024 09:38

OP your doctor is a fucking idiot. Of course silent coeliac exists. I have it myself. Wait and see what they say when you have the camera.

Terrifiedshakes · 29/07/2024 09:39

I thought she was a bit of a fucking idiot too BananaLama, just didn't want to say it.

OP posts:
pinkdelight · 29/07/2024 09:40

It does help to talk on here.

I know you feel this, but with health anxiety posts it sometimes feels like it's a way of feeding the anxiety - seeking reassurance but actually finding more things to worry about and not ultimately helping even if in the moment it feels good to be talking about your worries and finding new angles on it. The real issue here as some PPs have said is the health anxiety and getting help for that. Without managing that, any other health issues (if there are any) are very hard to get clarity on because the anxiety distorts it and the googling does not help.

RosesAndHellebores · 29/07/2024 10:11

Terrifiedshakes · 29/07/2024 08:44

I don't want a liver test. I don't want a scan. I don't want an MRI.

I want a doctor to explain to me results, what they mean, what they don't mean. The likelihood of things.

But I don't want any more tests. Or results. Or waiting for results. NHS or private. No more tests or letters or me having to look at the NHS app for results.

I just want to understand.

I think people think I want tests. I fucking do not. I can believe words if the person saying them knows what they are saying.

So you want a Dr to spend time with you, reviewing all your results and whether there are interlinks and adjustments to ensure levels across the board are optimal. In which case, you need to find an excellent private physician/GP with an interest in auto immune/endocrinology. I guess you need a 40 minute appointment and to go armed with print outs of all your results. They may recommend a few new tests, probably blood and a follow-up appointment.

Peace of mind is important but it costs money. Unless there are significant clinical indicators that something is wrong, it is a luxury that you must pay.

Nothing wrong with fucking luxuries - they are no different from fucking tests that you deem unnecessary.

If you don't wish to part with your own money I would gently suggest that you get a grip. FWIW I have a significant chronic medical condition. I do not reach the clinical bar to receive optimal treatment due to nice recommendations. I am afraid, therefore, and using yiur own phraseology, I have to pay fkr the fucking treatment even though the NHS ran all the tests to determine the condition which was useless expenditure as they won't treat it.

Terrifiedshakes · 29/07/2024 10:14

Roses, think I just want to get back on Sertraline and the receptionist wouldn't give me a telephone appointment. While I'm sat with the GP, I'll probably as them a few questions about my results, yes. But I'll also be mindful I have about 5 mins with them.

OP posts:
Terrifiedshakes · 29/07/2024 11:47

The Dr did look at every single blood result. He has reassured me he's not worried about my liver and explained why.

He gave useful tips about my anxiety.

He couldn't have been more patient, informative and knowledgeable.

The appointment took about 6/7 mins and its probably given me 6/7 weeks of calmness until I have the camera, which I'm not worried about.

OP posts:
CovertPiggery · 29/07/2024 12:30

Terrifiedshakes · 29/07/2024 11:47

The Dr did look at every single blood result. He has reassured me he's not worried about my liver and explained why.

He gave useful tips about my anxiety.

He couldn't have been more patient, informative and knowledgeable.

The appointment took about 6/7 mins and its probably given me 6/7 weeks of calmness until I have the camera, which I'm not worried about.

I'm really you had a good doctor that explained things for you.

It makes such a difference to feel listened to and that they have actually looked at everything.

CormorantStrikesBack · 29/07/2024 13:20

You’ll probably be waiting months for an endoscopy? Six to ten months wait here.

if blood tests are in normal range then they’re normal even if at the higher end. Some caveat applies around vit d tests and I think thyroid but liver tests are accepted range.

Terrifiedshakes · 29/07/2024 13:38

6-10 months?

Crikey.

My gym buddy's husband is a consultant in this area. I've not mentioned it as I don't want them to think I want any favours. My DH works for them too and I've told him not to mention it. Now I'm more relaxed though, I'm definitely not mentioning it.

OP posts:
Sosorryliver · 29/07/2024 21:35

Terrifiedshakes · 29/07/2024 13:38

6-10 months?

Crikey.

My gym buddy's husband is a consultant in this area. I've not mentioned it as I don't want them to think I want any favours. My DH works for them too and I've told him not to mention it. Now I'm more relaxed though, I'm definitely not mentioning it.

It depends on your area/ local waitlists. I have an appointment for a top and bottom endoscopy about three weeks from referral. My bloods are normal, apart from anemia, so they think there's some sort of intermitant gastrointestinal bleeding although I've done three qfit tests which were all fine.

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