Diabetes with extra unknown illnesses

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CMH

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Hi all,

I’m looking for advice on behalf of my partner. His journey with diabetes began in July when he went to the doctor with chronic diarrhoea, which is sometimes really urgent. While they were investigating the cause of this, they did a HBA1C test and his was 137. Soon after, he was put on insulin and things seemed better for a short time. Originally they thought he was type 1 due to drastic weight loss but the test came back negative and he was told it was type 2. This is reasonable because his diet before diagnosis was not great.

However, the diarrhoea continued and he began to get severe abdominal pains too. He had a fecal elastase test to test for exocrine pancreatic insufficiency which came back normal. He’s also been tested for haemochromotosis because his iron levels were high. The results came back showing he had two genes for two different types of haemochromotosis. Normally you need two genes of the same type for a diagnosis of haemochromotosis. The GP thinks that this would not cause any damage but the diabetes specialist asked for further tests to see if high iron levels have caused the diabetes. The specialist also asked for them to redo the blood test to check if he’s type one.

He’s also had an endoscopy, a full body CT scan and today a colonoscopy, all of which showed nothing noticeably wrong.

At the moment, he is really struggling with controlling his blood sugar. It seems really erratic and completely unpredictable. We wonder if this has got to do with his digestion being erratic or if the iron levels are effecting his control. Or maybe both.

So far, the only treatment he’s had is the insulin and codeine which helps with the pain and reduces the diarrhoea from 6 to 10 times daily to maybe a two or three times a day.

Is there anyone who has had a similar experience or has some recommendations about what to do next? It seems like every test comes back negative but the digestive symptoms continue and he’s feeling so fed up. It’s affecting his ability to work and socialise and this has a really negative impact on his mental health. Any advice would be greatly appreciated!
 
Hi @CMH, I’m a newbie here and I can’t comment on the issues relating to his BG. However in 2007 I had my gallbladder removed and for 2 years suffered with diarrhoea several times a day and I empathise with your partner. I now have to take a sequestration medication everyday to combat this issue. It’s called “Colestyramine” or “Questran” and is available a low sugar form. Perhaps asking his GP to prescribe this to see if it helps cure the diarrhoea?
 
When I was originally diagnosed with diabetes back in January 2023, the diagnosis was a by product of trying to get a definitive answer for my stomach issues. Things had got that bad over Christmas last year that I felt really uncomfortable leaving the house.

Ultimately my colonoscopy diagnosed inflammatory bowel disease (Crohn's) but that didn't really account for all the symptoms.

Slowly but surely, as I have brought my diabetes under control, the stomach issues have also been tamed and I rarely have an issue now - very occasionally I will have a flare up.

Has your partner changed their diet alongside the insulin? I followed a low carb approach to manage my diabetes and it has also sorted out my stomach issues. I appreciate it doesn't work for everyone but it might be worth a go.
 
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Going low carb improved my gut health enormously too although I was no where near as bad as your partner sounds. You do have to be careful going low carb when using insulin but as long as he adjusts his doses to account for it, he should be fine, if he decides to try that option.

I can't comment about the stomach pains and haemochromatosis as I have no experience of that but I hope you find a cause and some appropriate treatment soon.
 
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The erratic digestion is probably not helping his blood sugar levels @CMH I remember your previous posts. I too thought it sounded like a pancreatic problem so it must have been a blow when the faecal elastase came back normal.

I can’t remember if he’s had a coeliac screen? One thought - has he been tested for intestinal parasites like giardiasis?
 
@Duane62 Thanks so much for sharing. I will definitely suggest he talks to his GP about this.

@Deb_l I really sympathise with what you are saying about being afraid to leave the house. This is definitely something my partner is suffering with at the moment. He has tried lowering his carb intake but this is quite a struggle for him so it’s a work in progress. Perhaps your experience and that of @rebrascora might give him the motivation to keep going with this! Thanks for sharing your experience.

@Inka thanks for your comment. He has been tested for coeliac but not for any parasites as far as I know. Definitely something more to look into! It was a bit of a surprise when the FE test came back clear. We’re both still a little sceptical about the result as I’ve read online that the results are not always reliable if the stool sample used is watery. Some kind of pancreas issue has always seemed like the best fit for all of his symptoms.
 
@Duane62 Thanks so much for sharing. I will definitely suggest he talks to his GP about this.

@Deb_l I really sympathise with what you are saying about being afraid to leave the house. This is definitely something my partner is suffering with at the moment. He has tried lowering his carb intake but this is quite a struggle for him so it’s a work in progress. Perhaps your experience and that of @rebrascora might give him the motivation to keep going with this! Thanks for sharing your experience.

@Inka thanks for your comment. He has been tested for coeliac but not for any parasites as far as I know. Definitely something more to look into! It was a bit of a surprise when the FE test came back clear. We’re both still a little sceptical about the result as I’ve read online that the results are not always reliable if the stool sample used is watery. Some kind of pancreas issue has always seemed like the best fit for all of his symptoms.
It may help to look at the website of Guts.uk which has info on all sorts of gut disorders with a search on either symptoms or conditions.
 
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