Coeliac, hypos, the universe and everything.

[Melgar]

I am not sure where I am going with this post, but whatever, it seems cathartic. I am very careful when buying food from the supermarkets in case I should buy something with gluten in it. You will see me going up and down the aisles with my magnifying glass (I am visually impaired) looking at all the ingredients (can they make the print any smaller?). I usually cook everything from scratch to avoid hidden gluten, but yesterday I decided to buy something from the store. By law, here in Canada, manufacturers and supermarkets must highlight potential allergen contents in bold. Yesterday, I was helping a friend clear out a house for an estate sale, so on route I bought a simple Greek salad from the deli.- tomatoes, feta, onions and cucumber. I did not use their dressing instead I bought a Greek salad dressing with no gluten containing ingredients. Last night around 9pm a rash developed all over my back. I recognized the burning, itchy rash immediately as an immune/inflammatory response to gluten. I had glutened myself despite being so careful. I woke this morning around 3am for a pee. I noted that my blood sugars had been bumping along at 4 mmol/ls all night. Of course, when i got up to pee I had a DP rise topping out at 7 mmol/ls. I got back in bed satisfied that my blood sugars were okay, and drifted back to sleep. 30 mins later I woke up feeling angry and anxious. My blood sugars were at 3 mmol/ls with the arrow pointing straight down, 2.9 , 2.8 my liver wasn’t kicking in. I ate a Starburst candy, my go to when my sugars go low. which usually works. It stopped the drop, but my sugars were not going up. I didn’t want to consume a large amount of carbs as that would cause me to yo yo, so I nibbled on 60% ginger chocolate. They did eventually rise to a comfortable 7.5 and are now holding a steady 6.0 but as anyone who has had low blood sugar knows you feel like s*** all day. It makes you wounder how many organs are impacted. A few days ago I was seeing moderate amounts of ketones in my pee. Go figure! I am not sure where I am going with this I guess i just wanted to let my frustration out. Thanks for listening.

 

[JoKalsbeek]

I am not sure where I am going with this post, but whatever, it seems cathartic. I am very careful when buying food from the supermarkets in case I should buy something with gluten in it. You will see me going up and down the aisles with my magnifying glass (I am visually impaired) looking at all the ingredients (can they make the print any smaller?). I usually cook everything from scratch to avoid hidden gluten, but yesterday I decided to buy something from the store. By law, here in Canada, manufacturers and supermarkets must highlight potential allergen contents in bold. Yesterday, I was helping a friend clear out a house for an estate sale, so on route I bought a simple Greek salad from the deli.- tomatoes, feta, onions and cucumber. I did not use their dressing instead I bought a Greek salad dressing with no gluten containing ingredients. Last night around 9pm a rash developed all over my back. I recognized the burning, itchy rash immediately as an immune/inflammatory response to gluten. I had glutened myself despite being so careful. I woke this morning around 3am for a pee. I noted that my blood sugars had been bumping along at 4 mmol/ls all night. Of course, when i got up to pee I had a DP rise topping out at 7 mmol/ls. I got back in bed satisfied that my blood sugars were okay, and drifted back to sleep. 30 mins later I woke up feeling angry and anxious. My blood sugars were at 3 mmol/ls with the arrow pointing straight down, 2.9 , 2.8 my liver wasn’t kicking in. I ate a Starburst candy, my go to when my sugars go low. which usually works. It stopped the drop, but my sugars were not going up. I didn’t want to consume a large amount of carbs as that would cause me to yo yo, so I nibbled on 60% ginger chocolate. They did eventually rise to a comfortable 7.5 and are now holding a steady 6.0 but as anyone who has had low blood sugar knows you feel like s*** all day. It makes you wounder how many organs are impacted. A few days ago I was seeing moderate amounts of ketones in my pee. Go figure! I am not sure where I am going with this I guess i just wanted to let my frustration out. Thanks for listening.

Always lovely when you make an effort to get everything right, and still you get hit with something, somehow... And good luck figuring out where it went wrong.

I hope you'll feel better soon. And all this won't get a repeat in the foreseeable!
Hugs,
Jo

 

[Melgar]

Always lovely when you make an effort to get everything right, and still you get hit with something, somehow... And good luck figuring out where it went wrong.

I hope you'll feel better soon. And all this won't get a repeat in the foreseeable!
Hugs,
Jo

Thanks JoKalsbeek I appreciate that. I always love your posts

 

[Melgar]

When you have a food intolerance it makes you really think about your food, same for everyone trying to keep their blood sugars in check.

 

[Antje77]

I am not sure where I am going with this I guess i just wanted to let my frustration out. Thanks for listening.

Letting out frustration is a very good reason for posting, doesn't have to go anywhere else!

Having a body that doesn't play fair IS frustrating and a hassle on the best of days, let alone on the not so good or plain rubbish days.
I hope the effects of being glutened and the persistant low are improving quickly.

For what it's worth, after a low, it takes my Libre ages to notice I'm already above 4 on a fingerprick, I guess the interstitial fluid in the back of my arm is rather low on my body's list of priority when it needs to decide where to send the glucose first.
So after a low, I always use fingerpricks to see if I'm in the safe zone already, I often am, even before the symptoms have gone.

 

[Lamont D]

When you have a food intolerance it makes you really think about your food, same for everyone trying to keep their blood sugars in check.

I agree so much!
As you have said, you cook everything and are intolerant to lactose and gluten that you know of.
Hi again, we've been here before @Melgar.
My question is, have you or your doctors found out why you have the occasional episode of hypoglycaemia?
The cause or trigger?
I do know how hard it is to have intolerance to carbs and sugars.
And most of the time, I'm avoiding even thinking about it as much as possible. But it's does become a chore, doing what we have to do, to keep as healthy as possible.

My best wishes.

 

[Melgar]

Letting out frustration is a very good reason for posting, doesn't have to go anywhere else!

Having a body that doesn't play fair IS frustrating and a hassle on the best of days, let alone on the not so good or plain rubbish days.
I hope the effects of being glutened and the persistant low are improving quickly.

For what it's worth, after a low, it takes my Libre ages to notice I'm already above 4 on a fingerprick, I guess the interstitial fluid in the back of my arm is rather low on my body's list of priority when it needs to decide where to send the glucose first.
So after a low, I always use fingerpricks to see if I'm in the safe zone already, I often am, even before the symptoms have gone.

Thanks Antje77 much appreciated. My sugars are now stable at 7.1 mmol/ls. I'm still a bit shaky and of course I now have diarrhea and IBS the usual tag a long suspects after an accidental gluten attack! Thankfully my sugars are stable again. My dr. casually told me that Coeliac can make your sugars very unstable and I can attest to that. Yes I finger prick when I go low but as you say it's all going on in the background a bit before Libre figures it out. My sugars may have been on the way down again when I thought the DP had taken care of the low. So note to self finger prick and don't take Libre's word for it. The anger I felt took me aback though. I usually feel extremely anxious, hungry and shaky I havent felt angry before that's a new one for me. Maybe I'm the same as you and the interstitial fluid in the back of my arm is a low priority highway!

 

[Melgar]

I agree so much!
As you have said, you cook everything and are intolerant to lactose and gluten that you know of.
Hi again, we've been here before @Melgar.
My question is, have you or your doctors found out why you have the occasional episode of hypoglycaemia?
The cause or trigger?
I do know how hard it is to have intolerance to carbs and sugars.
And most of the time, I'm avoiding even thinking about it as much as possible. But it's does become a chore, doing what we have to do, to keep as healthy as possible.

My best wishes.

Hey Lamont D, thanks, yes we have lol. Late 2022 I went 100% gluten free (well as much as you can as there are many ingrediants that have hidden gluten, blue cheese for instance can have hidden gluten due to the manufacturing process). My Dr told me that Coeliac can make your blood sugars 'brittle'. I'm pretty sure that is the word he used to describe it. There is also a question mark over what type of diabetes I have. I don't know whether you have read any of my previous posts, but when I went totally gluten free I put on weight - 15lbs - taking me to the upper end of normal weight. My blood sugars also started to go up quickly so I decided to check out the very low carb diet. I lost 35 lbs which was great. It didn't do much for my blood sugars unfortunately. That said, even though they haven't gone down much they haven't increased either so I am doing something right. If I am able to hold the inevitable rise for a while I'll be happy. In answer to your question "have you or your doctors found out why you have the occasional episode of hypoglycaemia?" It looks like Coeliac is the cause. It doesn't just effect your intestines it can have an impact on other areas of your body, much like other autoimmune issues. As you can see from my post here my skin is affected (sorry I always have a senior spelling moment with affect and effect). It does make me wonder about my liver and pancreas, but really that is just me wondering. And yes, I'm lactose intolerant but I think I have a genuine lactose intolerance independant of coeliac. They did al, the blood work to see what was going on with my pancreas. I have low/normal C-peptides and I might be losing my beta cells. I'm hoping my low carbs will help preserve them for a bit. I also am very iffy with fruit, but that got better after I quit gluten. As much as being gluen intolerant is a big pain it could be worse, I think people with life threatening food allergies have it a lot worse.

 

[Lamont D]

Hey Lamont D, thanks, yes we have lol. Late 2022 I went 100% gluten free (well as much as you can as there are many ingrediants that have hidden gluten, blue cheese for instance can have hidden gluten due to the manufacturing process). My Dr told me that Coeliac can make your blood sugars 'brittle'. I'm pretty sure that is the word he used to describe it. There is also a question mark over what type of diabetes I have. I don't know whether you have read any of my previous posts, but when I went totally gluten free I put on weight - 15lbs - taking me to the upper end of normal weight. My blood sugars also started to go up quickly so I decided to check out the very low carb diet. I lost 35 lbs which was great. It didn't do much for my blood sugars unfortunately. That said, even though they haven't gone down much they haven't increased either so I am doing something right. If I am able to hold the inevitable rise for a while I'll be happy. In answer to your question "have you or your doctors found out why you have the occasional episode of hypoglycaemia?" It looks like Coeliac is the cause. It doesn't just effect your intestines it can have an impact on other areas of your body, much like other autoimmune issues. As you can see from my post here my skin is affected (sorry I always have a senior spelling moment with affect and effect). It does make me wonder about my liver and pancreas, but really that is just me wondering. And yes, I'm lactose intolerant but I think I have a genuine lactose intolerance independant of coeliac. They did al, the blood work to see what was going on with my pancreas. I have low/normal C-peptides and I might be losing my beta cells. I'm hoping my low carbs will help preserve them for a bit. I also am very iffy with fruit, but that got better after I quit gluten. As much as being gluen intolerant is a big pain it could be worse, I think people with life threatening food allergies have it a lot worse. I

From my experience mate, I believe that the medical profession don't concern themselves enough with intolerance especially the severity that you get (e)ffected by. The severity and reaction is very similar to an allergy.
In certain circumstances, a glucose intolerance, such as in T2, regardless of how you got it, cos there is so many. Is dependent on how your metabolism reacts and (a)ffects you, with symptoms and reaction. It all depends on how much the intolerance doesit. Food you need and with the lactose it limits the food, meds, drinks etc that you can have. And something that is presupposed to be healthy may in fact put your health in harms way. It did for me.
something like veg oils. Can be dangerous. You 're just not sure.
I have heard of brittle diabetes. Though not sure how it works or the science behind it.
It is great that you lost the weight and aware of the low carb approach, and done the hard work of what works for you.
I wish you well (again)
Best wishes

 

[Melgar]

From my experience mate, I believe that the medical profession don't concern themselves enough with intolerance especially the severity that you get (e)ffected by. The severity and reaction is very similar to an allergy.
In certain circumstances, a glucose intolerance, such as in T2, regardless of how you got it, cos there is so many. Is dependent on how your metabolism reacts and (a)ffects you, with symptoms and reaction. It all depends on how much the intolerance doesit. Food you need and with the lactose it limits the food, meds, drinks etc that you can have. And something that is presupposed to be healthy may in fact put your health in harms way. It did for me.
something like veg oils. Can be dangerous. You 're just not sure.
I have heard of brittle diabetes. Though not sure how it works or the science behind it.
It is great that you lost the weight and aware of the low carb approach, and done the hard work of what works for you.
I wish you well (again)
Best wishes

Thanks Lamont D, yes I totally agree. My gluten intolerance was 'silent' for much of my life, except for bread and beer ! Go figure. I just avoided them. Then at the end of 2022 my gluten sensitivity turned, rising up like a freakin volcano. I couldn't tolerate anything with gluten in. I knew I had a sensitivity but I had no idea it was Coeliac. I am not sure what triggered it.

 

[Lamont D]

Thanks Lamont D, yes I totally agree. My gluten intolerance was 'silent' for much of my life, except for bread and beer ! Go figure. I just avoided them. Then at the end of 2022 my gluten sensitivity turned, rising up like a freakin volcano. I couldn't tolerate anything with gluten in. I knew I had a sensitivity but I had no idea it was Coeliac. I am not sure what triggered it.

This is me thinking outside the box.
One of the reasons why 'wheat' and other grains are in bold. Is not only gluten. There is another list of reasons including wheat senstivity. It could also be the sprays the growers use for crop growing. Some of these are described as toxic to certain people.
It has been all over the internet, especially in North America.
I learned so much about grains and especially wheat in his it (a)ffects and the (e)ffects it has on a person and the intolerance it causes in other metabolic and endocrine health issues.
And of course with the increasing number of T2.

 

[Melgar]

This is me thinking outside the box.
One of the reasons why 'wheat' and other grains are in bold. Is not only gluten. There is another list of reasons including wheat senstivity. It could also be the sprays the growers use for crop growing. Some of these are described as toxic to certain people.
It has been all over the internet, especially in North America.
I learned so much about grains and especially wheat in his it (a)ffects and the (e)ffects it has on a person and the intolerance it causes in other metabolic and endocrine health issues.
And of course with the increasing number of T2.

I don't doubt it Lamont D. We consume so many unknown chemicals with our foods, goodness knows what it is doing to our bodies.

 

[Melgar]

I just wanted to post my blood sugars from last night. Since my hypo early Thursday morning (I had another hypo Thursday afternoon, a mild one, it only went into the 3's) , my blood sugars are great. Living with unstable blood sugars have their good moments too. Mine is not to reason why my pancreas is bratty one minute and angelic the next.

 

[Antje77]

Considering the last part of your thread title I'm pretty sure I'm on topic here:

HAPPY BELATED BIRTHDAY!

 

[Melgar]

Considering the last part of your thread title I'm pretty sure I'm on topic here:

HAPPY BELATED BIRTHDAY!

Awwww thanks Antje77

 

[Melgar]

Considering the last part of your thread title I'm pretty sure I'm on topic here:

HAPPY BELATED BIRTHDAY!

I couldn't find the laughing emoji so - lolol

 

[Lamont D]

Many happy returns mate.

 

[Bcgirl]

I read your posts with interest. I have issues with wheat and gluten and was tested for coeliac with both blood tests and intestinal biopsy….all negative. My internist said with all the varieties of wheat and all the messing around they do with it I was likely allergic. I went to lifelabs for the test and sure enough I am highly allergic to wheat and gluten….and I only found out when I was 53. Certainly was an issue with my Hashimotos…after ditching all grains my antibodies dropped from 2000 to 130. If I eat gluten I itch and sneeze…blah. I never buy packaged products and cook all my own food. Just recently diagnosed diabetic (my pancreas was severely damaged when I was 50 due to severe acute pancreatitis) and even though in Canada they don’t recognize it as such, I am type 3c….and yes, my doctor and I spar about that…lol. Yes…I do blame wheat for my pancreatitis as I never drank and have no gallstones. I was extremely “addicted” to all things wheat back then, very odd that I was actually allergic.
continue with your posts, they do fascinate me. I certainly don’t envy your lows! That’s scary.
all the best…and happy birthday! Mines coming up in a few weeks.

 

[Melgar]

I read your posts with interest. I have issues with wheat and gluten and was tested for coeliac with both blood tests and intestinal biopsy….all negative. My internist said with all the varieties of wheat and all the messing around they do with it I was likely allergic. I went to lifelabs for the test and sure enough I am highly allergic to wheat and gluten….and I only found out when I was 53. Certainly was an issue with my Hashimotos…after ditching all grains my antibodies dropped from 2000 to 130. If I eat gluten I itch and sneeze…blah. I never buy packaged products and cook all my own food. Just recently diagnosed diabetic (my pancreas was severely damaged when I was 50 due to severe acute pancreatitis) and even though in Canada they don’t recognize it as such, I am type 3c….and yes, my doctor and I spar about that…lol. Yes…I do blame wheat for my pancreatitis as I never drank and have no gallstones. I was extremely “addicted” to all things wheat back then, very odd that I was actually allergic.
continue with your posts, they do fascinate me. I certainly don’t envy your lows! That’s scary.
all the best…and happy birthday! Mines coming up in a few weeks.

Hi @Bcgirl, thanks for the birthday wishes. That’s great you find my posts interesting, thank you. I see BC in your name are you in British Columbia? That’s my home province. I have bounced around some of the eastern provinces, but I’m very glad to be back in BC. I didn’t know we don’t recognize 3c diabetes here. How strange. What the heck do we call it then! The acute pancreatitis must have been brutal. Life threatening in fact.

As for coeliac it can be very difficult to diagnose, but with a biopsy it’s definitive. It took my daughter over 10 years to get her diagnosis. Like me , she can’t keep anything with gluten down for more than a few minutes. They did manage to get an antibody hit just from from the small amount of gluten she ingested. The specialist said they were 99.9% sure it was coeliac just from her antibody response alone. She produced antibodies from the tiny bit of gluten she kept down. Do you have the DQ2 and/or DQ8 haplotypes for coeliac? If you have just one of those you may still be at risk for it. I guess you must have done the 6 weeks of hell, eating gluten . Good god, how did you manage that? You must have felt ghastly. I can no longer tolerate a spec of gluten. Now a wheat allergy is potentially far more dangerous in the moment with the risk of your body hyper responding to the gluten, internally or externally. Sheesh. Have they given you an EpiPen? As for me, I get two forms of skin rash with gluten ingestion. Both are autoimmune responses; A symmetrical urticaria rash, that’s dramatic those rashes can be as big as dinner plates, and Dermatitis herpetiformis. The latter seems to be content staying in my hairline. I actually thought it was an allergy to my hair products. I did have a small break out on my upper arm early last year. I thought I had shingles. Both rashes are autoimmune responses. The Dermatitis herpetiformis makes it pretty much a slam dunk for coeliac. My coeliac was silent for most of my life, which happens in about 80% of people with coeliac. Didn’t even know I had it. I couldn’t eat bread or drink beer, but that was it until it wasn’t. Yeah I cook everything from scratch, I can’t risk glutening myself. Cooking from scratch is a positive thing for sure.

I also have the variants for Hashimoto’s, but I have not developed it. What were your symptoms? When did they diagnose Hashimoto’s and how?

Thanks again for the birthday wishes.
Mel

 

[Bcgirl]

Well…seems I have a few questions to answer
yes, do live in British Columbia! South central interior, heaven on earth….except mid winter, then it’s hell on earth.
The pancreatitis was indeed life threatening. I was hospitalized for 16 days and had no food by mouth for two months. I then had to have an operation to address the cyst that formed ….it was a year I don’t ever want to repeat.
i ate gluten up until I had the allergy confirmation (that’s how addicted I was). The symptoms were different for me, I just got really itchy and initially there was no rash (terrible full body rash came later). I just about went mad, there was no relief. I BEGGED for bloodwork and was finally diagnosed. It took a good year. Sadly I was not properly medicated and it was another four years until a great doctor really took interest and saved me….
i do carry epipens….mostly for my peanut allergy. Never have had to use one.

i was interested in you mentioning that a low carb diet didn’t really work for you…didn’t lower your blood sugar. That’s exactly what I am experiencing! In fact I was low carb, zero sugar at the time of diagnosis. I do find I can keep sugars around 6 if I don’t eat carbs but any carb will give me horrid spikes that I do not want! It’s so frustrating! I exercise daily, walk and lift weights, do yoga….everything I’m supposed to do and yet these darn sugars…the longer i can stay away from meds the better.

my very damaged pancreas created quite a stir this winter…i had a Ct scan, MRI and ultrasonic endoscopy ….they say I’m fine but messed up …. At least now they’ll check every year (high probability of developing pancreatic cancer)

im having a bit of high sugars right now, it does happen once in awhile. All night I was about at 7 and at midnight it went to about nine….very unusual for me and no reason….definitely not food related, I never cheat! Hopefully it goes back to normal soon. At the gym today it was 6.5 and higher and only went to 6 when biking for 20 minutes, then immediately went up again….stupid pancreas….

cheers