I am coeliac and now Newley diagnosed diabetic

[Jill Johnson]

I have been coeliac since a young child and out of the blue just before the age of 60 had a routine coeliac blood test which showed up I was diabetic with a reading of 99. My gp rang and told me I was highly likely to be type 1 and put me on metformin . He said I would have a dietician appointment and diabetic appointment too. I had one follow up phone call but was not given much information or help from my gp at all. It was 3 months and I went for my next blood test and readings came down to 66 but the metformin was making me feel so unwell I was changed to gliclazide and after starting testing my blood sugars they were all over the place. The gp admitted he had dictated letters but they had not gone off but thankfully my son in laws brother who is type 1 was so helpful and even sent me a libre sensor to try. I had 5 hypos in 1 week and the worse being at 2am in the morning dropping to 3 and I felt awful for a few days after and this is very worrying as I am the carer for my husband who had mixed dementia. After ringing the gp telling them how awful I felt a nurse rang me back and has now agreed to refer me to a consultant and assures me the dietician letter has gone off too. My sugars are so up and down and I must admit it’s been so hard with the coeliac disease as most gluten free foods are laden with added sugars which makes it so hard to find suitable things to eat. I’ve got no energy and just feel pretty low right now but am determined to get on top of this hopefully when I get the right help as I am 4 months down the line now and have had no professional help until this nurse since last week. Has anyone else been left in limbo like me or is it a postcode lottery like everything else.

 

[EllieM]

Hi @Jill Johnson and welcome to the forums. I'm sure there will be help and support on here whichever type of diabetes you have, which seems to be a little up in the air at the moment. (But be patient, as most of the UK posters are asleep now.)

Unfortunately T1 and coeliac do quite often go together - autoimmune conditions seem to love company. But I am confused as to why your GP hasn't organised the T1/T2 tests so you know for sure which you have? At your age T2 is normally much more likely than T1 but if the issue is in doubt then I would expect your doctor to order the T1/T2 tests (cpeptide and GAD antibodies) to identify which kind of diabetes you have.

Many T2s on these forums seem to control their blood sugars very well by reducing the carbs in their diets, but if you are T1 then you will eventually need insulin and be able to inject for at least some of those carbs. (Some T1s find it easier to go low carb, others don't). Note that I'm not making any assumptions as to what type of diabetes you have at this stage - you need an appointment with a diabetic clinic so that they can do the tests.

I'm going to tag in some LADA (slow onset T1, generally the type of T1 got be people over 30) folk to see if they can help. @searley @Daibell

Some LADA can go for a long time without insulin, and the treatment varies a bit according to the view of the presiding diabetic specialist. Some like to start them on small amounts of insulin early, others don't. And some people manage to go years with an incorrect T2 diagnosis before the correct T1 one. (So you are actually lucky that your GP is considering the possibility now.)

As regards the hypos on gliclazide - I'd push my nurse to review the dose now because hypos are no fun at all.

I'm sorry you are currently feeling so unwell, things should get better once you get the right treatment. And yes, am not at all impressed by your GP forgetting to send the letters out, but there seem to have been quite a lot of posters with complaints about a diabetes diagnosis with no follow up care.

Lots of virtual hugs and once again, welcome.

 

[JoKalsbeek]

I have been coeliac since a young child and out of the blue just before the age of 60 had a routine coeliac blood test which showed up I was diabetic with a reading of 99. My gp rang and told me I was highly likely to be type 1 and put me on metformin . He said I would have a dietician appointment and diabetic appointment too. I had one follow up phone call but was not given much information or help from my gp at all. It was 3 months and I went for my next blood test and readings came down to 66 but the metformin was making me feel so unwell I was changed to gliclazide and after starting testing my blood sugars they were all over the place. The gp admitted he had dictated letters but they had not gone off but thankfully my son in laws brother who is type 1 was so helpful and even sent me a libre sensor to try. I had 5 hypos in 1 week and the worse being at 2am in the morning dropping to 3 and I felt awful for a few days after and this is very worrying as I am the carer for my husband who had mixed dementia. After ringing the gp telling them how awful I felt a nurse rang me back and has now agreed to refer me to a consultant and assures me the dietician letter has gone off too. My sugars are so up and down and I must admit it’s been so hard with the coeliac disease as most gluten free foods are laden with added sugars which makes it so hard to find suitable things to eat. I’ve got no energy and just feel pretty low right now but am determined to get on top of this hopefully when I get the right help as I am 4 months down the line now and have had no professional help until this nurse since last week. Has anyone else been left in limbo like me or is it a postcode lottery like everything else.

Oh, what a mess... I'm sorry you've been left hanging! You did get your blood sugars down quite a bit from the looks of it. Did you change anything in your diet? I had hypo's while on gliclazide, but I was combining it with a low carb diet at the time. I didn't know that could be risky, and my endo didn't either.

As you've found, a lot of coeliac replacement foods are high in sugars or basically carb heavy, so if you've been avoiding those, it could well be that you've been having less carbs than you had when you were diagnosed, and what HbA1c your medication was based on. Can you tell us what you currently eat, an drink, on a day to day basis? Meat, fish, poultry, cheese and eggs are, as far as I know, gluten-free as well as carb-free, so you might be quite okay with those, but with gliclazide you can drop way too low. Please do keep testing a lot, and find out whether you maybe should be cutting down on the glic to be safe with the way you're currently eating. If you're interested in low carb eating, (which some T1's do too to keep their levels from going all over the place) https://www.diabetes.co.uk/forum/blog-entry/the-nutritional-thingy.2330/ might help some, even though it is geared to non-coeliac T2's.

I know it's hard when you're a carer to take care of yourself as well, but for the moment, do make yourself the priority. Like in the air plane safety protocols, take care of you first, so you're in a position to help those who can't help themselves.
Hugs,
Jo

 

[EllieM]

And @Jill Johnson just a quick mention that we have a specific gluten free dietary subforum here

Gluten-free Forum | Diabetes Forum • The Global Diabetes Community

 

[Jill Johnson]

Hi @Jill Johnson and welcome to the forums. I'm sure there will be help and support on here whichever type of diabetes you have, which seems to be a little up in the air at the moment. (But be patient, as most of the UK posters are asleep now.)

Unfortunately T1 and coeliac do quite often go together - autoimmune conditions seem to love company. But I am confused as to why your GP hasn't organised the T1/T2 tests so you know for sure which you have? At your age T2 is normally much more likely than T1 but if the issue is in doubt then I would expect your doctor to order the T1/T2 tests (cpeptide and GAD antibodies) to identify which kind of diabetes you have.

Many T2s on these forums seem to control their blood sugars very well by reducing the carbs in their diets, but if you are T1 then you will eventually need insulin and be able to inject for at least some of those carbs. (Some T1s find it easier to go low carb, others don't). Note that I'm not making any assumptions as to what type of diabetes you have at this stage - you need an appointment with a diabetic clinic so that they can do the tests.

I'm going to tag in some LADA (slow onset T1, generally the type of T1 got be people over 30) folk to see if they can help. @searley @Daibell

Some LADA can go for a long time without insulin, and the treatment varies a bit according to the view of the presiding diabetic specialist. Some like to start them on small amounts of insulin early, others don't. And some people manage to go years with an incorrect T2 diagnosis before the correct T1 one. (So you are actually lucky that your GP is considering the possibility now.)

As regards the hypos on gliclazide - I'd push my nurse to review the dose now because hypos are no fun at all.

I'm sorry you are currently feeling so unwell, things should get better once you get the right treatment. And yes, am not at all impressed by your GP forgetting to send the letters out, but there seem to have been quite a lot of posters with complaints about a diabetes diagnosis with no follow up care.

Lots of virtual hugs and once again, welcome.

Thank you for the reply there’s so much information on here. My gp rang me yesterday and has taken me off the slow release gliclazide and put me on 80 of the normal gliclazide at breakfast to try and help the spikes I’m having at the minute. He has also assured me that I have been referred to a dietician and the hospital at last as I am coeliac as well as diabetic.
I have been asked to test 4 times a day before meals and my dr is calling me again next week so at last looks like he’s listening to me. Thank you for your help.

 

[Jill Johnson]

Hi
Just an update as my gliclazide was spilt two weeks ago 40 in a morning then 40 early evening to try and avoid the spikes I was having but then last weds I started feeling really lethargic, legs like jelly then had several hypos over the weekend. Never felt so ill and haven’t been able to do much at all. My doctor rang yesterday and has now taken me off the meds altogether because of the hypos and is ringing me on Friday to see how I’m doing. My level have obviously gone up today but no more nasty hypos. Is it right to be on no meds for now and what do you think he will suggest next as this is all getting too much for me and getting me down. Just want my life back and this diagnosis sorted. Still no hospital appointment just a dietitian phone call which was helpful. I have bloods booked and an appointment with the nurse next week. Thank you all.

 

[ianf0ster]

Hi
Just an update as my gliclazide was spilt two weeks ago 40 in a morning then 40 early evening to try and avoid the spikes I was having but then last weds I started feeling really lethargic, legs like jelly then had several hypos over the weekend. Never felt so ill and haven’t been able to do much at all. My doctor rang yesterday and has now taken me off the meds altogether because of the hypos and is ringing me on Friday to see how I’m doing. My level have obviously gone up today but no more nasty hypos. Is it right to be on no meds for now and what do you think he will suggest next as this is all getting too much for me and getting me down. Just want my life back and this diagnosis sorted. Still no hospital appointment just a dietitian phone call which was helpful. I have bloods booked and an appointment with the nurse next week. Thank you all.

If you are Type 2 or are an early stage adult Type 1, then eating low carb (higher traditional) Fat may be enough for you without additional medication. Many T2's and a smaller percentage of T1's can control their Blood Glucose with no diabetes medication (in the case of T2's) or with hardy any Insulin (in the case of T1's).

What are you actual levels? It's best to test before each meal and then 2hrs after 1st bite in order to see the effect of the meal. Aim for a spike of less than 2.0mmol and a maximum BG high or 8.0 mmol or below. If you can manage to modify your meals in order to get into that range without going into hypo, then you are doing fine and in less than 3 months will have an HbA1C in the pre-diabetic range or even the 'normal range'.

 

[AndBreathe]

@Jill Johnson - My personal diagnosis was for T2, and I have done pretty well managing that with diet and keeping on the move.

On the advice on my Endo I follow a strictly gluten-free diet (my tests were negative and inconclusive, but then I haven't eaten bread or pasta in years.

When told to go gluten-free, I decided that I wouldn't go to GF bread, or whatever, as using subs increases the chances of tripping up and being "glutened" which is unpleasant. Over time, I softened and accepted GF Worcestershire Sauce and Soy Sauce, but that's it.

To be honest, I have no issues finding plenty to eat and drink, although initially it was a very frustrating experience to find gluten in so many seemingly innocuous "stuff", but hey ho. Thankfully it's not an essential nutrient!

I hope your situation clarifies soon. You need to be able to settle into things and get on with your slightly adjusted life.