Type 1 diabetes and coeliac symptoms

[Alexm5079]

Hello

I am just wondering whether there are any type 1 diabetics on here who have been diagnosed with coeliac disease? If so, would you mind sharing your symptoms in relation to your diabetes glucose levels as well as the symptoms that come with coeliac?
The reason I am asking is because I have been t1 for nearly 11 years now and since I had my last baby 8 months ago I have been waking up with extremely high sugar levels every morning that we have tried to get to the bottom of but cannot. I have never had this problem before. To add to that I do eat carby meals in the evening but like I said it had never affected me like this before and I also go to bed with a reading of less than 8mmol but wake with anything above 15 up to 27! Also been waking up aching all over and no periods for 3 months, hair loss, low folate levels, gurgling stomach especially the upper abdomen after I eat a carby meal. Constipation and diarrhoea. Pains in tummy. Tiredness, headaches and I'm pale. Also noticed a lot of mucus in stools (not all of the time). Sorry tmi. I have had blood test done waiting on results but I'm thinking it may be best to just cut the gluten out. Doctor says coeliac comes hand in hand with t1 diabetes. Thanks guys

 

[CarbsRok]

What ever you do don't cut the gluten out until you have been tested for Coeliac as the test wont be accurate.
Hope you feel better soon.

Have you done any basal testing so you can find out exactly when your blood sugars start to rise?

 

[Alexm5079]

Hi thanks for the reply.
I have been using the freestyle libre sensor on and off and according to that it starts to spike about 12 midnight and just rises up. I take levemir at 10pm.

 

[GBS_82_]

What time do you finish eating your evening meal and what sort of stuff are you meeting? I'm sure you've already thought all this through, but just in case

 

[Alexm5079]

Yes I have. I have food about 7pm and then usually so munchies like crisps and yogurt about 8-9pm but I have ruled all of that out thanks anyway

 

[azure]

I only know one Type 1 in real life who has coeliac and they had unexplained hypos before diagnosis. I assumed this was because they weren't absorbing things properly, but I dont have CD myself so don't know.

I've changed my basal a few times since having my baby, so don't feel bad if you're having to,do that.

If it's not coeliac, the only other thing I thought of was if you were having disturbed nights as that makes me high. However, as you say, your highs are really quite high : /

I hope you get to the bottom of whatever it is and get it sorted soon.

 

[Kristin251]

I am not celiac but I am very gluten/ grain intolerant. I had all the issues you describe when my sugars were high pre DX of T1. Once I started on insulin and absorbing my food all the symptoms went away. Also had lose teeth. Even though I tested negative for celiac I was advised to continue staying GF. I'm dairy free for the most part as well. Gluten and dairy go hand in hand. Same size and shape of protein so your body perseeves dairy the same as gluten. Gluten can block yourninsulin receptors as well. Same with dairy for me. I'm much more insulin resistant when I eat dairy.

 

[Alexm5079]

Ahhh so that could explain why I have high sugars after a pizza... so how were you diagnosed with the intolerance if you don't mind me asking?

 

[CarbsRok]

Yes I have. I have food about 7pm and then usually so munchies like crisps and yogurt about 8-9pm but I have ruled all of that out thanks anyway

Are you blousing for the munchies if not there lies your problem. Crisps and yogurt would also cause a slow rise even with a bolus due to the fat content.

 

[Alexm5079]

I do take injection for my evening snacks if it contains more than 15g of carbs we've already looked at that issue. They've ruled out my last meal/snacks of the day due to the timing of the spike I am getting it even happens when I don't eat anything in the night thanks anyway though

 

[Kristin251]

My body diagnosed me haha. Don't necessarily have intestinal/ digestive issues but I will be very moody, low energy and weepy the next few days. I gain boatloads of weight overnight.
The symptoms I described above were more NOT being diagnosed soon enough, losing tons of weight in a few weeks. I was 'starving in the land of plenty' as my Dr put it. I was eating tons of food to try to stop weight loss to no avail. Without insulin and high bs I was not absorbing my food.

My daughter tested negative to celiac but buckles over in severe pain with the slightest crumb. Symptoms of gluten intolerance are not always intestinal. They can show up anywhere with any disease or illness. Inflammation etc. it's much easier for me to avoid it knowing it blocks insulin receptors. I don't want high bs nor to I want to pump myself full of insulin for it. It's just not worth it FOR ME. We all have to make our own decisions and formulate our own diet. I will also meantion all grains, starch and sugar make me very sleepy. My body is telling me something. Pain is not the only sign.

 

[Alexm5079]

I didn't know that gluten blocks insulin receptors so it's obviously better to avoid it where possible and especially if you want to lose weight. Thanks for your feedback

 

[Kristin251]

If you want to lose weight, ditching gluten ( as well as other grains) and dairy will give you a great jump start. For me personally I need to keep carbs quite low. I get my carbs only from avocado, above ground veggies and nuts/pumpkin seeds. This also gives me the best energy. I'm sure you will see your sugars drop as well as your insulin doses and your insulin sensitivity. Test test test. And talk to your team if you decide to try this. Most people want more carbs and variety than me. I want a happy stomach as well as good bs control. This diet is my ticket but it surely isn't for everyone.
Also to mention when I dumped grains many years ago, pre T1 DX my health improved emmensly. But that is just me.

 

[Okulu]

I am not celiac but I am very gluten/ grain intolerant. I had all the issues you describe when my sugars were high pre DX of T1. Once I started on insulin and absorbing my food all the symptoms went away. Also had lose teeth. Even though I tested negative for celiac I was advised to continue staying GF. I'm dairy free for the most part as well. Gluten and dairy go hand in hand. Same size and shape of protein so your body perseeves dairy the same as gluten. Gluten can block yourninsulin receptors as well. Same with dairy for me. I'm much more insulin resistant when I eat dairy.

"Gluten and dairy blocks insulin receptors"? I'd love to see the evidence for this. Do you have any, Kristin?

 

[Okulu]

Hello

I am just wondering whether there are any type 1 diabetics on here who have been diagnosed with coeliac disease? If so, would you mind sharing your symptoms in relation to your diabetes glucose levels as well as the symptoms that come with coeliac?
The reason I am asking is because I have been t1 for nearly 11 years now and since I had my last baby 8 months ago I have been waking up with extremely high sugar levels every morning that we have tried to get to the bottom of but cannot. I have never had this problem before. To add to that I do eat carby meals in the evening but like I said it had never affected me like this before and I also go to bed with a reading of less than 8mmol but wake with anything above 15 up to 27! Also been waking up aching all over and no periods for 3 months, hair loss, low folate levels, gurgling stomach especially the upper abdomen after I eat a carby meal. Constipation and diarrhoea. Pains in tummy. Tiredness, headaches and I'm pale. Also noticed a lot of mucus in stools (not all of the time). Sorry tmi. I have had blood test done waiting on results but I'm thinking it may be best to just cut the gluten out. Doctor says coeliac comes hand in hand with t1 diabetes. Thanks guys

I have Type 1 (since 1997) and coeliac disease (since 2014). I probably had it for 6 years or so before being diagnosed. I think the key thing to remember is that symptoms are quite variable. Like you, I had low folate pre-diagnosis. But I also had low ferritin. Horrendous feeling of fullness after eating not very much. Awful lactose intolerance (with resolved completely within 2 weeks of going GF). Weight loss. Awful acid reflux. But don't base your problems on mine. As I said, I think the more people you ask, the more different answers you'll get.
As for blood sugar problems - it wasn't particularly noticeable from what I remember. When I was in my late teens/early 20s I did get awful blood sugar readings in the morning (very similar to yours now). But this resolved way before the onset of coeliac disease.
Just reading your symptoms, has your GP checked your thyroid function? You may be hypothyroid (or hyperthyroid. Also, have you been tested for Inflammatory Bowel Disease? (also known as IBD - there are two types: Crohn's Disease, and Ulcerative Colitis - but neither of them are the same as IBS!)
Sorry, hope this has been helpful. Feel free to ask me any other questions!

 

[Alexm5079]

How did your high sugar levels resolve? I have had thyroid liver etc etc checked so that's all good. Nope I haven't been checked for ibd but the thought had crossed my mind. Thanks for your comment

 

[Okulu]

Glad your thyroid is working OK. I would seriously talk to your GP about ruling out IBD.
Eeeek, now there's a question re. resoling high BGs! The amount of stress in my life reduced (finishing my degree). And I also started waking at 3-4am to have a bolus. That helped a bit. But the REAL thing that helped me was going on pump - I have a higher basal rate between 4-8am, and that counteracts it. I totally feel your pain with it though - I always felt so ill when I woke up. How much levemir are you on at night? Have you been putting it up to see if that helps?

 

[Alexm5079]

Ha ha yeah I'm on 44 units a min and it just seems the more I put it up the higher it goes! I did start waking up at 3am to take bolus but I don't want to be doing that the rest of my life. I have asked about the pump but the doctor thinks I'm better off with injections as I have more freedom.....

 

[Okulu]

Oh god, what a nightmare. That sounds like the sort of amounts I was taking when I had the same problem.
The doctors are lying to you about the pump! I have much more freedom with it. I really don't know what I'd do without it. What makes them think you'd have less freedom? I think it could well be the answer to your problems. Well, at least partly anyway. Getting to the bottom of your GI problems (sorry, no pun intended!) would probably also be a help. The coeliac screen may take a few weeks to come back...

 

[Alexm5079]

The thought crossed my mind that they are trying to save money by not giving me the pump. I would like to know more about them to be honest since I have only ever used injections. Do you have to adjust insulin on the pump or does it just constantly release insulin throughout the day? I might go back and ask about it.