Ongoing tummy problems

[AineAnne]

I had tummy problems - cramps, pain, loose very smelly stools, severe flatulence (sorry, too much info! ) which became constant last year. My GP did a lot of tests and as a result I was diagnosed with high ferretin and then genetic haemocromatosis. Saw liver consultant and he said I had some fatty liver also. I am to start blood letting later this month though I got the impression the consultant was not certain my symptoms were even caused by haemocromatosis.

But all my tummy problems remain and the symptoms above are constant. Can haemocromatosis cause this? I am beginning to worry that I have something else going on. My iron levels aren't even all that high, now 459.

Thanks for reading.

[AyrshireK]

That kind of tummy trouble isn't listed as a symptom of Genetic Haemochromatosis on the BLT webpage about the condition. britishlivertrust.org.uk/in...

Have you had a colonoscopy to check your bowel out? Sounds like something more bowel related than liver. Have you kept a food diary to see if there is a trigger in any particular food group? - things like coeliac disease can cause those symptoms with gluten being the issue, dairy can upset some people. Good old diverticular disease/diverticulitis and even irritable bowel syndrome. Plenty of things can cause the types of bowel symptoms you are experiencing. Perhaps even more tests needed on that score.

Katie

[AineAnne]

Thanks Kate. I am going to follow up on the bowel issues.

[Fibro2021]

It's a well known fact that hemochromatosis leads to secondary liver damage, fibrosis and cirrhosis due to the accumulation of iron in the liver. Have you had any tests to determine the degree of liver fibrosis, such as fibroscan or ARFI elastometry?

[AineAnne]

Hi Fibro2021Yes I had a fibro scan and it did show some hardening of the liver. The consultant did not know if it is due to haemocromatosis or fatty liver or probably a bit of both. I have had mild fatty liver for about 15 years but it has never really got any worse.

He was going to suggest a liver biopsy but seemed hesitant and instead decided to arrange for me to start venesection. Am waiting to hear from nurse re first appointment. However I am now v concerned that all these symptoms I have are due to colon problems. To be honest since I tested positive for the double GH gene, my original tummy symptoms seem to have been forgotten about.

[AineAnne]

Not forgotten about by me but by NHS!

[jbrking]

Hi I have liver fibrosis and I’ve also suffered from attacks of diarrhoea and stomach pain. I was told for 2 decades that it was IBS. Anyway long story short, I was referred to Gastro about 5 years ago and had numerous tests - bloods, stools, colonoscopy with biopsy to rule out other things and a little unknown test with a sehcat scan which diagnosed the bile acid malabsorption. It’s a very misdiagnosed condition, often mistaken for other stomach/bowel conditions. Anyway, look at bad-uk.org website for info. If you think you have ask your GP for a referral and in the meantime ask for a trial of colestyramine sachets. If they help then it’s pretty conclusive. Good luck.

[Fibro2021 in reply to jbrking]

I agree with you that instead of bile acid malabsorption, which should be confirmed by the Sehcat scan, IBS is often misdiagnosed and no additional tests are performed for the patient.

[AineAnne]

Thank you for your helpful replies. I am going to see my GP on Thursday and am going to push for bowel tests. I think the haemocromatosis may be a red herring and my symptoms are more bowel related.

[Benwillfred]

I also had terrible tummy troubles..got so bad I couldn't leave the house !! My liver dietician advised to try lactose free milk..its amazing the difference...worth a try

[AineAnne]

Thanks for your message. I have noticed these past few days that fibre seems to really make it worse so I have cut down on it, give my tummy less work to do until I find out exactly what is causing it. I will bear in mind the lactose free milk. I am seeing my GP tomorrow and am going to ask to have my bowels investigated though it may be all down to GH. But it is reassuring to know that you had similar problems with your tum. I have not really had many aches and pains with GH, been mostly tummy probs.

[HB70]

This is really interesting, I went to the GP in March 2020 with stomach pain following a urine infection. I was tested for everything and was diagnosed with PBC. Still have the pain now and still on at the GP and consultant to investigate my bowel. GP says I have to accept I have a sluggish bowel but now thinking it could be bile acid malabsorption. Definitely worth looking into, there's definitely something not right.

[Hidden]

I did the blood letting as well. Twice at $150 a pop. Waste of money unless you actually have hemochromatosis. Mine was all due to booze. Ferritin and other iron numbers came back to normal rather quickly. Stomach issues as well but that has all but disappeared now.

I also had to be careful with the blood letting because my platelets are low..