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Type 1 Diabetes and Coeliac Disease

RAH79

RAH79

Active Member
Messages
38
Type of diabetes
Type 1
Treatment type
Insulin
Hi All, hope you are well x

I was hoping for some advice as I have emailed my Dietitian and received an out of office until 30th June 2015 and also emailed my nurse and surprise surprise had another out of office and they haven't provided any other contact detail for me to get advice so I thought I would try here (this happens regularly).

I have been keeping a really close eye on my sugar readings over this last Month as I was having problems with my left eye vision due to Maculopathy. This has now resolved and I was able to get much better control (even though I was having lots of hypos). However over the last week, my levels have become even worse than they were before and I initially thought that it was linked to re-introducing carbs into my diet. The reason why I started to increase Carbs is because I was constantly tired and needed energy (I was on a low carb diet for around 3 years) and with these changes I have kept a close eye on my blood glucose readings and made adjustments to my ratios and Levemir (Levemir is now back up to 20 units, was 18units) .

I've noticed a complete shift in my glucose levels within a matter of a week (I have been making very gradual changes to diet over a period of a month i.e reducing protein and increasing Carbs slowly). I'm now having frequent highs in the morning even though I may be 4.8 the night before. This is not a rebound effect because when I check during the night at various hours there appears to be just a gradual increase until the morning. I am now taking more insulin as a result of correction doses, changes to ratios (gradually), therefore I am now considering increasing the Levermir further but wanted to check with you guys first to see if there may be any other reason for the sudden and dramatic change in levels? I am also doing exercise such as Yoga and walking to ensure that the intensity does not impact of my blood level readings but it just seems that improvements from the adjustments I make are only temporary and I end up in a worse situation than before which is making it difficult to manage. I am also worried that the Maculopathy in my eye may return if I can't regain control on my levels and continue to maintain this....it is sooo frustrating!! :o(

To show the difference, this is a day example of my blood glucose readings as a comparison :

Sunday 21st June 2015
Before Breakfast - 15.1
Before Lunch - 2.7
Mid Afternoon - 21.5
Before Dinner - 11.7
After Dinner - 5.3
Midnight - 7.9
Early Hours - 5.6
Next Morning - 13.0

Sunday 14th June 2015
Before Breakfast - 5.2
Before Lunch - 6.4
Mid Afternoon - 6.3
Before Dinner - 6.5
After Dinner - 6.8
Midnight - 6.3
Next Morning - 4.4

Correction Dose is 1 - 2units (used to be 1 : 1 but changed due to sudden drops in BG)
Ratios changed from two time blocks of 1 unit : 3 Carbs and are now in 4 time blocks and range from 1unit : 2 carbs and 1 unit : 1 carbs (This is because I am really insulin resistant)

I use the Dafydd method of managing my insulin (I'm based in Wales to I think it's called something else in England). I've had Type 1 for 26 years since I was 10 years old.

I'm really feeling unwell at the moment, i.e sluggish, uncomfortable, bad headaches with nausea, tummy pain and diarrhea. I also occasionally suffer with pins and needles in my hands. The headaches and nausea are daily and it's really getting me down.

I've done some research and I discovered that Type 1 can be associated with Coeliac disease and I wonder if it would be a good idea to ask my GP for a blood test to see if this may be the cause of the consistent headaches and nausea? If it is Coeliac disease, can this also be the reason why I am having difficulty regaining control over my sugar levels? I may be completely off track, but I'm just trying to find out why I'm feeling unwell and why I've lost my blood glucose control again without any specific reason...

Any help or suggestions would be really appreciated. Thanks!!
 
Hi RAH, obviously no one can give medical advice, as you have already mentioned your first port of call would be your GP.
 
RAH79 said:
Hi All, hope you are well x

I was hoping for some advice as I have emailed my Dietitian and received an out of office until 30th June 2015 and also emailed my nurse and surprise surprise had another out of office and they haven't provided any other contact detail for me to get advice so I thought I would try here (this happens regularly).

I have been keeping a really close eye on my sugar readings over this last Month as I was having problems with my left eye vision due to Maculopathy. This has now resolved and I was able to get much better control (even though I was having lots of hypos). However over the last week, my levels have become even worse than they were before and I initially thought that it was linked to re-introducing carbs into my diet. The reason why I started to increase Carbs is because I was constantly tired and needed energy (I was on a low carb diet for around 3 years) and with these changes I have kept a close eye on my blood glucose readings and made adjustments to my ratios and Levemir (Levemir is now back up to 20 units, was 18units) .

I've noticed a complete shift in my glucose levels within a matter of a week (I have been making very gradual changes to diet over a period of a month i.e reducing protein and increasing Carbs slowly). I'm now having frequent highs in the morning even though I may be 4.8 the night before. This is not a rebound effect because when I check during the night at various hours there appears to be just a gradual increase until the morning. I am now taking more insulin as a result of correction doses, changes to ratios (gradually), therefore I am now considering increasing the Levermir further but wanted to check with you guys first to see if there may be any other reason for the sudden and dramatic change in levels? I am also doing exercise such as Yoga and walking to ensure that the intensity does not impact of my blood level readings but it just seems that improvements from the adjustments I make are only temporary and I end up in a worse situation than before which is making it difficult to manage. I am also worried that the Maculopathy in my eye may return if I can't regain control on my levels and continue to maintain this....it is sooo frustrating!! :eek:(

To show the difference, this is a day example of my blood glucose readings as a comparison :

Sunday 21st June 2015
Before Breakfast - 15.1
Before Lunch - 2.7
Mid Afternoon - 21.5
Before Dinner - 11.7
After Dinner - 5.3
Midnight - 7.9
Early Hours - 5.6
Next Morning - 13.0

Sunday 14th June 2015
Before Breakfast - 5.2
Before Lunch - 6.4
Mid Afternoon - 6.3
Before Dinner - 6.5
After Dinner - 6.8
Midnight - 6.3
Next Morning - 4.4

Correction Dose is 1 - 2units (used to be 1 : 1 but changed due to sudden drops in BG)
Ratios changed from two time blocks of 1 unit : 3 Carbs and are now in 4 time blocks and range from 1unit : 2 carbs and 1 unit : 1 carbs (This is because I am really insulin resistant)

I use the Dafydd method of managing my insulin (I'm based in Wales to I think it's called something else in England). I've had Type 1 for 26 years since I was 10 years old.

I'm really feeling unwell at the moment, i.e sluggish, uncomfortable, bad headaches with nausea, tummy pain and diarrhea. I also occasionally suffer with pins and needles in my hands. The headaches and nausea are daily and it's really getting me down.

I've done some research and I discovered that Type 1 can be associated with Coeliac disease and I wonder if it would be a good idea to ask my GP for a blood test to see if this may be the cause of the consistent headaches and nausea? If it is Coeliac disease, can this also be the reason why I am having difficulty regaining control over my sugar levels? I may be completely off track, but I'm just trying to find out why I'm feeling unwell and why I've lost my blood glucose control again without any specific reason...

Any help or suggestions would be really appreciated. Thanks!!
Click to expand...

Hi and sorry to hear of your frustrating problems, Some people diagnosed with Coeliac have no symptoms and others can have one or two or a lot ( I had many ). One of mine was the gradual loss of weight. this occurred because my body wasn't absorbing the nutrients and thus making me malnourished. With my blood glucose, it was erratic, but sometimes I ate food, took my Insulin and within 10 minutes, I was hypoing, because it was like taking Insulin, but without food. Nausea can be a symptom of higher blood glucose, so it is always best to see your GP for advice and a proper diagnosis . Maybe your increase in carbs is spiking you and then your blood glucose drops dramatically and visa versa. Type 1 and Coeliac are both auto immune conditions.
Good luck and please let us know how you get on.

Best wishes RRB
 
Thank you Robin and CarbsRok, I don't think the nausea is due to High BG as I get the same symptoms when my levels are lower. Did you also get like an electric jolt sensation going from the back of your neck down your body? I've read that this could be cause from a vitamin B12 definiency and I wonder if that's due to the poor absorbtion?

I understand no med advice, but just wondered if you may have experienced these symptoms. I will get it check and let you know, many thanks xxx
 
RAH79 said:
Thank you Robin and CarbsRok, I don't think the nausea is due to High BG as I get the same symptoms when my levels are lower. Did you also get like an electric jolt sensation going from the back of your neck down your body? I've read that this could be cause from a vitamin B12 definiency and I wonder if that's due to the poor absorbtion?

I understand no med advice, but just wondered if you may have experienced these symptoms. I will get it check and let you know, many thanks xxx
Click to expand...

Hi, no I didn't have electric jolt sensations with Coeliac symptoms Possibly nerve problems, a trapped nerve ? My symptoms were , severe upper abdominal pain, weight loss, nausea, vomiting, very low hypo's immediately after food with Insulin, bowel problems, diarrhea, feeling so ill at times, I had to lie down.

Good to know you are getting it checked out and good luck.
 
Ask your GP for a referral to a gastroenterolist. They should arrange endoscopies, shapes test etc..
Your GP can do a blood test too prior to a consultant.

Low carbing should not be making you permanently tired unless you aren't eating enough fat and calories. Yes initially it may give tiredness / fatigue symptoms.

There are lots of causes to symptoms that you describe.

Your blood levels... Do they fluctuate on days when you have stomach problems? Or do you have stomach probs every day?

I only ask because I had the reverse of your stomach probs. Mine has been diagnosed as slow colonic transit. If my stomach cannot chug along nicely then it tends to block up and my levels seem to raise hugely when this happens. I put it down to food just fermenting in my stomach and causing my levels to rise.

However my saving grace was that I never have ate a lot of csrby foods in 50 years but some persons did try to get me to eat bread n porridge for breakfast etc. This and jellybabies too caused me huge problems.

I eat purely a meditereanean diet now as heavy dairy such as cream and yogurts did not help me. I do not have any pasta, celeriac, rice, bread or potatoes. I eat fruit and veg and salads and wonderful pecan bite homemade pie..

Are you testing immediately you wake? And then an hour after to see if you have waking rises? (This is slightly different to DP). It may be that you have waking rises..

Do you basal test?

Is there any chance you are overtreating your hypo's?
 
Hi Donnelly

Thanks for your advice, sounds bad but the tummy upset I get is associated with the Diarrhea which settles but then returns but I haven't been able to pinpoint if this is a particular food. My levels appear high first thing in the mornings and before tea time but I have only recently adjusted my Basal and I am waiting for it to settle before considering any further adjustments. I thought at first that it might have been a case of S&D or a tummy bug, but when it settled and returned after again a few days I started to think it might be something else.

My typical daily diet before introducing carbs was ;
Breakfast
100g Low Fat Greek Yogurt
Small handful of blueberries (equivalent to approx 15g)
Lunch
Salad inc. Iceberg Lettuce, 1 salad tomato, cucumber and carrots
30g low fat Philadelphia
Dinner
Salad or Boiled Vegetables
100g - 150g of Chicken or Fish i.e Cod, Prawns or Haddock
* If hungry I will also include Eat Water Slim Rice which is a Rice replacement made from Konjac and has no Carbs
Snacks
Options Hot Chocolate or Greek Yogurt with Fruit

This was over a 3 year period and yes it was very low calorie but I was able to control my sugar levels much easier. However since Jan this year I have been experiencing extreme fatigue and decided that it was because I wasn't getting any energy from the food I was eating so started introducing carbs, however I have been struggling with these symptoms and can't pinpoint the cause. My diet at the moment consists of ;

Breakfast
1 x Weetabix with 30ml milk
Lunch
3 x Rivita or Jacobs Thins with Philadephia Spread
Dinner
Slice of Bread i.e Ciabata or Pita Bread
Chicken / Fish or Gammon with Salad or Boiled Vegetables
If Hypo
3 x Jelly Babies
1 x Nairn Biscuit

I will try the basal test to see if this identifies if I'm on the right levels. I'm not on a pump, but I do adjust my correction doese and ratios when I can identify a pattern. My correction dose used to be too strong and hence why I was having hypos after a correction, but I've adjusted it to 1 unit to 2mmol now and I have seen an improvement.

My Diabetic specialist is an Endocrinologist and when I spoke to the Dietician previously she said that she would chase up my 6 monthly review to see if he may be able to suggest something else, but I'm 1 month overdue my 6 monthly check up and I have already chased my appointment which doesn't look like it's gonna happen anytime soon. I'm therefore going to go to GP instead as I'm tired of getting dissapointed with a lack of support from with the Diabetic clinic.
 
@RAH79

Thats still low on calories...and all round nourishment...

I only eat once a day. 5/7 days it will be salads...and oily fish (2days) and then white fish..
Thanks to the help on here I added in heaps of avocado and olives and homemade salad/oil dressings and feta cheese.
My pecan pie bake has pistachio's, walnuts, almonds, pecans and cranberry or blueberries in them with 1 big bake (8 servings) having 5 tablespoons of coconut oil and 50ml of almond milk.

With this I always have a mix of some fruit. Today was a huge bowl of strawberries and then 2 dark choc sq and another 7 walnuts every night.

I also take a multi vitamin, and a vitamin D.

Tonight was steak n a big plate of salad, so once a week I have red meat.

Why are you aiming to keep your calories so low?

Why are you not having any fat at all?

You need some fat. Your body needs a balance of all foods. Where are you getting your iron from that your body needs? Are you taking any supplements?

I know I eat little which is why @phoenix a long time ago now gave me advice ref fat and not having enough of it...

Are you drinking diet drinks?
 
Hi Donnelly

It started as a low carb diet in order to get my sugar levels under control. As the weight dropped off (I lost over a stone over the course of a year) I found that my BG levels were getting much better and I've continued to follow this diet as I felt much better and fitter in myself, I wasn't feeling sluggish but wasn't doing much exercise either because I didn't have the motivation or energy to. however for some reason since Jan this year I started putting on weight, getting really tired and my levels started to increase. I started increasing my insulin and as we all know becomes a vicious cycle. I put on a stone in weight on about 3 to 4 months and it's demolarising after loosing all that weight to regain it so quickly with no obvious reason and I've been struggling ever since. I paid to go see a nutritionalist in Feb to try and sort out my diet, she suggested to park the weight worries for a while and to focus on eating healthier by introducing fats and carbs into my diet slowly. But by the end of the second week I was feeling bloated, uncomfortable and feeling more sluggish, but I continued with the diet as I initially thought it was only due to readjusting. However as a further week went by my BG had reached really high levels and I decided to stop the diet altogether and concentrate on getting my levels under control. But by April I started getting poor vision in my left eye which turned out to be Diabetic Maculopathy. My HB1Ac in December was 51% and my recent HB1Ac at the beginning of June was 57% although still in target levels, the Opthalmologist believes the sudden increased caused the Maculopathy. I'm glad to say that my vision has improved, but I'm worried that because my levels have become bad again that the Maculopathy may return :(

So I've been getting limited advice from my Diabetic Nurse and Dietician who also advised to eat some carbs. I also did some research and discovered about Gluconeogenesis (as I have been eating mostly Protein for ages) and that's how I found this helpful website, but now I'm getting these symptoms I'm starting to think that my current diet is causing all these problems! So if I return to minimum calorie / carb I return to the issue of feeling sluggish, tired and no energy but maybe better glucose readings, or if I force myself to eat carbs I struggle with tummy cramps, diarrhea, headaches, nausea and this horrid electrical jolt sensation and pins and needles in my hands.... :(

I just checked on Wowcher and they have a Gluten and Wheat intolerance test for £19 which I am going to do as this might help eliminate obvious causes for these issues. Not sure how reliable the results are but I'm hoping the more I find out the better it might be to get this resolved x
 
Hi Rah79

The probs with eyes are not just from higher hba1c but but of larger swings in levels. The less the swings the less trouble with eyes.

Your food both previously say 1 one salad tomato, cucumber etc isn't really enough nourisment of vitamins or minerals in a whole day.
Ie fish was white fish...white meat etc...

Are you within the normal BMI range for your age, height and weight?

If you were feeling sluggish on your previous eating why didn't you add in some healthy fat?

Have you ever used myfitnesspal to check your nutritional content?

Low carbing (and I have done this for nigh on 50 years) before it was known as low carbing) needs some fat.

Your brain needs to get its glucose from some goodness and it can't get it from lettuce and cucumber and lettuce.

You have to feed your inner body some good nutrition.
Have you looked at having oily fish such as salmon or sardines once or twice a week? I thought I hated it for 50 years but I knew from folks here that I wasn't having enough fat. I did lose weight from adding it on to my salads!! And I didn't need to or want to lose weight.!!

Also your food doesn't seem to have magnesium or potassium or minerals in it..

I would suggest that whilst you are sorting out your eating and blood levels that you take a multivitamin with iron every day.
You should also consider whether you are getting enough calcium as besides a little milk n philadelphia milk you are getting very little calcium.

Have you looked at eating a mediteranean diet lifestyle? This does require that you eat a balanced intake of good oils.

Please consider that the key part to good health is balance of nutrition, vitamins and minerals.

I put on weight when I was advised by some people to try eating porridge and toast for breakfast....something that I had never done... Those extra carbs alone were enough to cause weight gain.

Carbs are not the best thing for energy... Your sluggishness to me would have had the main cause as minimal fat. Your brain wasn't having enough glucose to function properly.
Glucose that your brain needs is not the same as glucose in your blood.... You are now feeding glucose directly in to your blood through the carbs... And this is showing in your readings.

Believe me ftom someone thst has drastically changed their thoughts on eating fat... Your body needs it. It does not need extra empty non nutritional carbs just for the sake of it.

Nuts are good. (Not covered in salt or chocolate!!)

Your body and brain will benefit from a bit of dark choc each day.. Just 2 squares of over 70% cocoa choc a day will give your brain a boost. Just google "dark chocolate benefits".

If you got better blood tests with your previous low carb living then go back to it... But please, please add in some fat.
Look at the mediteranean diet, here is a link (do it to the old way, not the americanised way)
http://oldwayspt.org/resources/heritage-pyramids/mediterranean-diet-pyramid

There is also an excellent book to buy in hardback or kindle called "get the glow"
By Madeleine Shaw. You don't have to follow the eating plans she gives but boy the recipes are delicious.....

You need to phone your hospital and speak to the appointments people... If you get nowhere with them (they should give you an appt date over the phone and confirm it in writing). Then speak to your consultants secretary. GPs are just generally practicing medicine and all they can do is write a letter to your consultant asking for an appt. If you don't get an appt from phoning the two places I have suggested then phone the PALS hotline for your hospital and get them to sort it out. They will.

I'm not currently on my pump as I have had to have a break and go back to MDI after 5 years so I appreciate the frustration at trying to get levels right but adding carbs in isn't the answer...(in my opinion!!)
 
It's more or less impossible to become coeliac without certain genetic variations (called HLA DQ2.5 and DQ8; a person can have 0, 1 or 2 copies of each )
Basically it is only these particular gene variations that 'react' with gliadin (a protein in wheat) .If you have those genetic variations then this reaction occurs . The variants are relatively common but for some reason a small proportion of people with these gene variants also develop an autoimmune response that in turn causes damage to the lining of the 'gut'.
Whatever the trigger is, it can happen at any time in life.

Both of the genetic variations are highly associated with T1 diabetes and other autoimmune conditions. So many people with T1 will have at least one copy of one of the risk variations. (eg I have one DQ8 allele which raises my risk of coeliac by a bit but not by nearly as much as if I also had of copy of the DQ2.5 allele .)
Link below explains well with some diagrams.
http://www.gbhealthwatch.com/Trait-Gluten-Intolerance.php
I gather that you aren't in the UK because NICE does recommend that people with T1 (also with autoimmune thyroid disease) are offered antibody tests if they have symptoms of coeliac disease.

I would suggest that if you are looking for a test that you get an appropriate one. If you look at the various pages linked to under the heading 'getting diagnosed' it tells you which tests are used and which home tests are a waste of your
money.
https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/

Lastly there is a very good article about non coeliac gluten sensitivity here: http://www.huffingtonpost.com/2015/04/22/gluten-sensitivity-myths-_n_7111992.html
 
RAH79 said:
Hi Donnelly

It started as a low carb diet in order to get my sugar levels under control. As the weight dropped off (I lost over a stone over the course of a year) I found that my BG levels were getting much better and I've continued to follow this diet as I felt much better and fitter in myself, I wasn't feeling sluggish but wasn't doing much exercise either because I didn't have the motivation or energy to. however for some reason since Jan this year I started putting on weight, getting really tired and my levels started to increase. I started increasing my insulin and as we all know becomes a vicious cycle. I put on a stone in weight on about 3 to 4 months and it's demolarising after loosing all that weight to regain it so quickly with no obvious reason and I've been struggling ever since. I paid to go see a nutritionalist in Feb to try and sort out my diet, she suggested to park the weight worries for a while and to focus on eating healthier by introducing fats and carbs into my diet slowly. But by the end of the second week I was feeling bloated, uncomfortable and feeling more sluggish, but I continued with the diet as I initially thought it was only due to readjusting. However as a further week went by my BG had reached really high levels and I decided to stop the diet altogether and concentrate on getting my levels under control. But by April I started getting poor vision in my left eye which turned out to be Diabetic Maculopathy. My HB1Ac in December was 51% and my recent HB1Ac at the beginning of June was 57% although still in target levels, the Opthalmologist believes the sudden increased caused the Maculopathy. I'm glad to say that my vision has improved, but I'm worried that because my levels have become bad again that the Maculopathy may return :(

So I've been getting limited advice from my Diabetic Nurse and Dietician who also advised to eat some carbs. I also did some research and discovered about Gluconeogenesis (as I have been eating mostly Protein for ages) and that's how I found this helpful website, but now I'm getting these symptoms I'm starting to think that my current diet is causing all these problems! So if I return to minimum calorie / carb I return to the issue of feeling sluggish, tired and no energy but maybe better glucose readings, or if I force myself to eat carbs I struggle with tummy cramps, diarrhea, headaches, nausea and this horrid electrical jolt sensation and pins and needles in my hands.... :(

I just checked on Wowcher and they have a Gluten and Wheat intolerance test for £19 which I am going to do as this might help eliminate obvious causes for these issues. Not sure how reliable the results are but I'm hoping the more I find out the better it might be to get this resolved x
Click to expand...
I wouldnt bother wasting your money on the test but have you had your thyroid checked? also get tested for Coeliac as both initially are blood tests.

one thing I would say is your previous low carb diet was virtually gluten free, which makes me think your thyroid may be more to blame in this instance.
 
From my experience it would be good to have a balanced nutritional diet....otherwise you will continue to feel bad...even if you get tests done it is important that you add healthy fats into your diet. Your brain needs it.
 
RAH79 said:
I started putting on weight, getting really tired and my levels started to increase. I started increasing my insulin and as we all know becomes a vicious cycle. I put on a stone in weight on about 3 to 4 months and it's demolarising after loosing all that weight to regain it so quickly with no obvious reason and I've been struggling ever since.
Click to expand...
Have you had your thyroid checked?
I would like everyone else says, say your diet is awful and that can't be helping long term :(
 
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