Hi everyone,
It's my first post here so hello to all! 🙂
I'm doing some research for a friend who's a very ill type 1 diabetic, she's so tired, ill and frustrated by this she's finding it hard to help herself, so I really wondered if you guys knew of anywhere that we could go to get advice outside of or as an add on to, the NHS. We're finding them too slow (this has been going on for 4-6 months) and my friend is getting increasingly ill.
Her symptoms are essentially the same as rapid gastric emptying syndrome/gastroparesis - nausea, abdominal cramping, acid reflux, frequent diarrhea (can be 3-5 times in the morning alone), dizziness, fatigue (she was off work for a good 2-3 months, and now is back part time but can only do around 3-4 hours at a push before she feels exhausted).
She hasn't been diagnosed with this syndrome, as there are many similar disorders so it may very well not be this.
Her sugar control has been terrible and erratic (and next to impossible to control with her digestive problems), she suffers from very low sugars (as low as 3 sometimes, quite commonly 4) and also sugar spikes (late teens through to early twenties). It's very rarely stable. I've noticed that she more frequently experiences more lows than highs which I've read can cause diarrhea?
It's hard to follow her sugars as she often will take the right amount of insulin, eat something and it continues to climb higher so she often ends up taking more insulin and then experiencing a crash. She's often at odds wondering what to do in this situation but feels she has to take more insulin in order to bring the sugars back down, and then she crashes.
Her diet is quite poor I think, but I'm not an expert in diabetes or digestive problems so it's hard to say what she should or shouldn't do.
- Breakfast is often crunchy nut cornflakes (this is usually about 9.30 am, 10.00 am although it's not consistent and her eating times can vary).
- Lunch is quite sporadic depending on what she feels she can eat but I often feel she's not eating well enough as there's hardly any fruit or veg (it can be a couple of slices of toast with nutella on, or a sandwich and a packet of crisps). Lunch is usually about 1.30 - 3.00 pm depending on when she manages to get up and how well she's feeling).
- Dinner is often 7.30 - 8.00 pm and seems to be the best meal that she has. She's had to move back with her parents as she's been so unwell she can't be left alone, and when she eats at home it's a good meal and has vegetables, meat, home cooked, often casseroles or something. When she goes back to her house with her husband it's usually pre-prepared bought food.
She seems to be better in the evening than in the mornings and afternoon.
She's been to the doctors and had the following tested for: coeliacs (negative), she's had an endoscopy which has proved negative for any blockages and no recording of damage from acid reflux, no hiatus hernia, nothing abnormal spotted, they've also ruled out ibs. She's still waiting for them to come back to her to arrange a tilt test for gastroparesis.
I know you can't give clinical advice, but I thought that your combined experiences might be able to shed some insight in terms of professionals we could go to or if you could share any experiences of your own?
We're in Devon, so any help or advice you can give would be greatly appreciated as we're all beside ourselves with worry.
Many thanks 🙂
It's my first post here so hello to all! 🙂
I'm doing some research for a friend who's a very ill type 1 diabetic, she's so tired, ill and frustrated by this she's finding it hard to help herself, so I really wondered if you guys knew of anywhere that we could go to get advice outside of or as an add on to, the NHS. We're finding them too slow (this has been going on for 4-6 months) and my friend is getting increasingly ill.
Her symptoms are essentially the same as rapid gastric emptying syndrome/gastroparesis - nausea, abdominal cramping, acid reflux, frequent diarrhea (can be 3-5 times in the morning alone), dizziness, fatigue (she was off work for a good 2-3 months, and now is back part time but can only do around 3-4 hours at a push before she feels exhausted).
She hasn't been diagnosed with this syndrome, as there are many similar disorders so it may very well not be this.
Her sugar control has been terrible and erratic (and next to impossible to control with her digestive problems), she suffers from very low sugars (as low as 3 sometimes, quite commonly 4) and also sugar spikes (late teens through to early twenties). It's very rarely stable. I've noticed that she more frequently experiences more lows than highs which I've read can cause diarrhea?
It's hard to follow her sugars as she often will take the right amount of insulin, eat something and it continues to climb higher so she often ends up taking more insulin and then experiencing a crash. She's often at odds wondering what to do in this situation but feels she has to take more insulin in order to bring the sugars back down, and then she crashes.
Her diet is quite poor I think, but I'm not an expert in diabetes or digestive problems so it's hard to say what she should or shouldn't do.
- Breakfast is often crunchy nut cornflakes (this is usually about 9.30 am, 10.00 am although it's not consistent and her eating times can vary).
- Lunch is quite sporadic depending on what she feels she can eat but I often feel she's not eating well enough as there's hardly any fruit or veg (it can be a couple of slices of toast with nutella on, or a sandwich and a packet of crisps). Lunch is usually about 1.30 - 3.00 pm depending on when she manages to get up and how well she's feeling).
- Dinner is often 7.30 - 8.00 pm and seems to be the best meal that she has. She's had to move back with her parents as she's been so unwell she can't be left alone, and when she eats at home it's a good meal and has vegetables, meat, home cooked, often casseroles or something. When she goes back to her house with her husband it's usually pre-prepared bought food.
She seems to be better in the evening than in the mornings and afternoon.
She's been to the doctors and had the following tested for: coeliacs (negative), she's had an endoscopy which has proved negative for any blockages and no recording of damage from acid reflux, no hiatus hernia, nothing abnormal spotted, they've also ruled out ibs. She's still waiting for them to come back to her to arrange a tilt test for gastroparesis.
I know you can't give clinical advice, but I thought that your combined experiences might be able to shed some insight in terms of professionals we could go to or if you could share any experiences of your own?
We're in Devon, so any help or advice you can give would be greatly appreciated as we're all beside ourselves with worry.
Many thanks 🙂
