Pain and blood sugar levels

[cott97]

I have not been formally diagnosed as coeliac but I am extremely gluten intolerant. Before I gave up gluten I had very painful joints which were inflamed all the time and constant diarrhoea. My basic level of inflammation would have been too high I believe to show much difference in blood sugar levels. If you haven't tried giving up gluten regardless of whether you tested positive for gluten it's worth trying for one to two weeks. That was enough for me to know I would never eat gluten again. If it shows no difference then start eating gluten. You haven't said whether you have had both the blood tests and scopes for coeliac - I only ask because as a T1 you are more likely to suffer from another autoimmune disease like coeliac unlike T2s

 

[donnellysdogs]

Hi all. Type 1 for about 30 years. New to this thread and don't post much but I too have had chronic pain for about 10 years. Diagnosed undifferentiated connective tissue disease, carpel tunnel, possible lupus, possible sjorgens, probable coeliacs. Basically summing up - they just don't know. Over the years what I have discovered is that my pain is significantly worse when my sugars rise - not the other way round as you all seem to get. So high sugars cause inflammation causing pain. Today I had a wrap for lunch. 50g cho. usually I just have salad (maybe 20g.) Took 50g dose (50g x 1.3 units) through pump which should have covered it but sugars now 16.7. Not worried about that as it often happens and I adjust (and don't eat bad stuff again for a while) but the point is I knew my sugars were up due to much increased pain in arms, elbows and hands which are my main areas but also shooting pains in my leg. This is very common for me. So 2 things; firstly my sugars cause my pain to increase and secondly if I eat a lot of carbs I have to increase by ratio of insulin to carbs. E.G 20g cho x 1.3 units insulin. 50g cho x 2 units insulin. Anyone else get this?

Diagnosis of coeliac etc shouldnt take a long time to sort, carpel tunnel too can be sorted easily enough. I've had carpal tunnel done 20 tears ago but now waiting for op for de quervains tensonitis-but its only taken 4 weeks from seeing consultant to an op.
The possible illnesses you list should not be taking an age to identify and get help for.

An unhealthy gut can trigger all sorts of ailments. I've been speaking to Professors and consuktants about this recently and they applaud me for my tuemeric and black pepper quantity each day to help health and inflammation. Also got told that my taking oil of oregano is good for gut health, and has probably helped keep mine healthy when I had SIBO test and more done.

The turmeric has definitely helped with inflammation and pain for me. I cannot take painkillers like normal people so rely upon finding my own help. (Must have been a drug dealer in previous life as its only morphine and lidocaine that helps from drug companies.

The Professors and others. I speak to are low carbers and believe that they do cause major health isues so I'm not surprised that you think your body reacts your way...

 

[cott97]

Do you take tumeric tablets? I can't take NSAIDs so like you its morphine!

 

[SockFiddler]

@maryrachel - that's horrendous. And I know it's not as easy as "Get to the doctor and sort yourself out" when you're in pain, but, gosh, it really does sound like you're due some answers, and perhaps something as simple as a round of blood tests could help you find them? I'm sending you much love, though, and have noted what you said about the relationship between your levels of BS (one for @cott97 there!) and your pain.

(Sorry to post yet another diet here!) There's a fairly-well-established link between gluten and IBS. Though I don't have it in me to research specific studies, I did find this link which looks fairly measured and reliable:

https://www.glutenfreesociety.org/ibs-reversable-on-a-gluten-free-diet/

Of course, following a carb-restrictive diet means someone is likely to be massively reducing their gluten intake by default anyway, but it seems there's lots of different ways to tackle that particular issue.

@donnellysdogs how do you take your turmeric and pepper? Do you cook with them or steep them in water? I enjoy both those spices and can imagine doing something tasty to some chicken with both of those! More info would be grand - I'm keen to come off the meds a little more, particularly as it seems I've done something unpleasant to my wrist and had no idea at all - my little and ring finger (and the side of my hand) went numb two days ago. 2 docs said that they didn't feel it was a "brain event" (oh, how medics use words, haha), or to do with my circulation, but that I'd injured it somehow ~(it's my balancing, bracing, weight-bearing when I get to my feet hand) and trapped a nerve. Now, whenever I wear a removable splint, I get the sensation back, so it seems they're correct.

Trouble is with that, of course, that I should probably get an x-ray and a cast, but that's a step too far when planning to move house (or just rise to my feet) - and I'd not be able to type until it got removed!

It's crazy to see constant examples of how my body (and Euan's) just doesn't process pain properly and then to consider how much pain I'm still in. Maybe there's different kinds, hitting different parts of my brain in different ways, I dunno.

Much love to all pain sufferers this evening, whether posting or reading. You all inspire me to keep going (after 2 really rough days). <3

 

[SockFiddler]

Oh, I nearly forgot, @donnellysdogs I think you're onto something (again) with your supposition that T1s and T2s respond to pain differently. Or, at least, our insulin does: we all experience elevated cortisol and (at times) adrenaline when in pain, which leads to a sugar dump and, thus, a raising of our BG, but I guess normal diabetic rules apply as to what happens to it next.

My understanding is that we T2s have impaired insulin function, while T1's have impaired insulin production. (If I'm wrong, please do correct me!) But I wonder if that's sort of central to the way we seem split about which comes first, the pain or the BG?

 

[donnellysdogs]

Do you take tumeric tablets? I can't take NSAIDs so like you its morphine!

I take pomi-t tablets that arent compressd as some tablets coatings can react with me. These are dried real foods.. pomegranate, turmeric, tea and broccoli. Nothing extra added.

I also heap turmeric with black pepper in my chai tea with ginger and cinammon and also add turmeric and black to something in my main meal too.

 

[cott97]

Will add it gradually I think tablet first. Not sure I am up to your chai tea yet!

 

[donnellysdogs]

Its groubd black pepper not real peppers as these also are a no no in my colon.

This post has made me grin... just for the fact that sometimes you can think, "Blimey I moan" because of pain but as explained to my GP "sometimes its like you may have toothache and the only thing you are told is to be positive and distract yourself and that toothache doesnt go until the tooth is pulled out or treated-the pain is there constant".
Sometimes like with carpal tunnel or de quervains an op is the only way out of the pain. Mindful thinking doesnt work with toothache and some problems with pain are the same.
It made me grin that we can also recognise relation between pain and bloods or vice versa.

@maryrachel - I hope that you get some answers soon.

@SockFiddler i think gluten can exasperate gut probs. There are some like me that cant even go gluten free. Its no flour, pasta, rice or meats at all. The opposite of IBS really. I stupidly ate a sausage on Sunday... and ended up bloated like 9 months pregnant within 4 hours and ridiculous pain.. my fault. Jyst thought as my bowel seemed to be improving.. thought I would try a 97% meat one that I cook for my dog training sessions on Mondays.. big mistake. Again pain that docs really cannot feel. When someone normal says bloated they dont bloat to a 9 month pregnacy size and chronic, chronic pain sometimes needing morohine intravenously from ambulance and A&E...

Honestly, bless all those that have chronic pain.... xx

 

[maryrachel]

Thank you butterfly but 10 years on I have given up. Just need to look for solutions of my own but the biggest challenge is understanding why something is happening so you can eliminate isn't it? Hope you were sorted after the gall stones

 

[maryrachel]

Diagnosis of coeliac etc shouldnt take a long time to sort, carpel tunnel too can be sorted easily enough. I've had carpal tunnel done 20 tears ago but now waiting for op for de quervains tensonitis-but its only taken 4 weeks from seeing consultant to an op.
The possible illnesses you list should not be taking an age to identify and get help for.

An unhealthy gut can trigger all sorts of ailments. I've been speaking to Professors and consuktants about this recently and they applaud me for my tuemeric and black pepper quantity each day to help health and inflammation. Also got told that my taking oil of oregano is good for gut health, and has probably helped keep mine healthy when I had SIBO test and more done.

The turmeric has definitely helped with inflammation and pain for me. I cannot take painkillers like normal people so rely upon finding my own help. (Must have been a drug dealer in previous life as its only morphine and lidocaine that helps from drug companies.

The Professors and others. I speak to are low carbers and believe that they do cause major health isues so I'm not surprised that you think your body reacts your way...

Hi Donnellydogs you are right of course your t should not be difficult to diagnose most of these things but I have moved location a lot over the last few year and switched from
Nhs to private with insurance through work and now back to NHS and there is no consistency. Plus there is no holistic approach in NHS. So yes I had bloods and

 

[maryrachel]

Sorry sent before I finished. Had blood test and biopsy for coeliacs and showed nothing but the specialist was sure it still was and said they sometime come back negative?? So eliminating is probably the way to go.
But leaky gut - yes. I have thought that for a long time (have ibs symptoms too which I control with linseed) Would be keen to know how you take turmeric also.
Sock fiddlerI also get massive bloating so will try gluten withdrawal for sure.

 

[cott97]

Sorry sent before I finished. Had blood test and biopsy for coeliacs and showed nothing but the specialist was sure it still was and said they sometime come back negative?? So eliminating is probably the way to go.
But leaky gut - yes. I have thought that for a long time (have ibs symptoms too which I control with linseed) Would be keen to know how you take turmeric also.
Sock fiddlerI also get massive bloating so will try gluten withdrawal for sure.

I would definitely try cutting out the gluten it worked for me

 

[maryrachel]

I would definitely try cutting out the gluten it worked for me

Will do then. Thanks. How long is a decent abstinence to judge it it is a problem? Also how much do you think it was the gluten exclusion or the processed flour (sugars) in normal bread that helped you?

 

[donnellysdogs]

Hi Donnellydogs you are right of course your t should not be difficult to diagnose most of these things but I have moved location a lot over the last few year and switched from
Nhs to private with insurance through work and now back to NHS and there is no consistency. Plus there is no holistic approach in NHS. So yes I had bloods and

I've moved at least once every 3 years all my life! Now 54...

Dont give up. For example.. my de quervains. My GP put me to rheumatology nurse! Senior GP cancelled appt! Pain didnt go despite us buying £55 brace and physio. Back to GP. GP again booked for rgeumatology nurse. Knew this was wrong. So we paid £250 to see a orthapaedic consultant who put me back thru nhs for operation that I need and I got sorted for myself within 4 weeks.

Previous GP ended up paying for gastroenenterologist and he put me back thru nhs quickly to get stomach sorted.

Cancer... had 4 hospitals in total in just 18 months. 1st op messed up. They didnt do the rads. Another hosp did. They badly messed up. Could have died from poisoning. No 1 and 3 and 4 hosp did not want to remove a healthy boob. (No named consultant after 1st hosp). I wrote xmas day to a Professor at my 4th hosp that I had never seen. He read my letter, saw me and agreed. He removed 2nd breast end of April and it was not healthy.... I fell into 3% that have removed and find the supposed healthy one isnt..
All consultants wanted to do was reconstruct ... never listened to me. I am now waiting for a 3rd op to bbe areanged in November by the Prof. He saw my 1st op and straight away said he could sort it better. Other hospitals said they couldnt...

Dont give up. I've not fought the NHS.... I've fought for MY health and MY wellbeing.

I also had fantastic care from pain consultant and team. However he could not tell me about certain meds because my CCG did not allow them to be prescribed. It was only other flat ladies in pain that mentioned thisspecific pain patch. I asked him and he said to me "I'm glad you asked as I could not tell you about them!!"..... all I had to then do was ask my GP for a private prescription and pay £110 for 30days worth. Sure its a lot of money and some lucky ladies can get them thru NHS but I do get some PIP and use this money as it should be- on helping myself to keep independent....

Please dont give up... you arent fighting doctors or NHS. You are fighting for your health.

I have done a lot of moving... even living for a caravan for a year inbetween selling and buying homes so I know how hard it can be..but dont give up.

 

[cott97]

Will do then. Thanks. How long is a decent abstinence to judge it it is a problem? Also how much do you think it was the gluten exclusion or the processed flour (sugars) in normal bread that helped you?

For me it's gluten. So I had severe knee and ankle pain and diarrhoea which I was trying to ignore even though I had to stop every 20 mins. I was also very tired and headachy and read on page 10 of a Google search that all this could be based by gluten. Within a weekof stopping all gluten the ankle and knee pain was significantly improved, the diarrhoea was less urgent and I felt more with it. I later learnt these are all symptoms of being "glutened". Now I have been given gluten twice by mistake, the first time the company believed they had sourced GF product and hadn't. I was in the ladies within 20 mins and ill for 3 days. The second time was in April when I bit into a GF wrap on a flight and realised it tasted too good to be GF, when I checked it stated wheat on the label. Severely upset stomach, cramps and tiredness were a result. I can eat a high sugar GF option with no side effects apart from high blood sugars.

 

[maryrachel]

I've moved at least once every 3 years all my life! Now 54...

Dont give up. For example.. my de quervains. My GP put me to rheumatology nurse! Senior GP cancelled appt! Pain didnt go despite us buying £55 brace and physio. Back to GP. GP again booked for rgeumatology nurse. Knew this was wrong. So we paid £250 to see a orthapaedic consultant who put me back thru nhs for operation that I need and I got sorted for myself within 4 weeks.

Previous GP ended up paying for gastroenenterologist and he put me back thru nhs quickly to get stomach sorted.

Cancer... had 4 hospitals in total in just 18 months. 1st op messed up. They didnt do the rads. Another hosp did. They badly messed up. Could have died from poisoning. No 1 and 3 and 4 hosp did not want to remove a healthy boob. (No named consultant after 1st hosp). I wrote xmas day to a Professor at my 4th hosp that I had never seen. He read my letter, saw me and agreed. He removed 2nd breast end of April and it was not healthy.... I fell into 3% that have removed and find the supposed healthy one isnt..
All consultants wanted to do was reconstruct ... never listened to me. I am now waiting for a 3rd op to bbe areanged in November by the Prof. He saw my 1st op and straight away said he could sort it better. Other hospitals said they couldnt...

Dont give up. I've not fought the NHS.... I've fought for MY health and MY wellbeing.

I also had fantastic care from pain consultant and team. However he could not tell me about certain meds because my CCG did not allow them to be prescribed. It was only other flat ladies in pain that mentioned thisspecific pain patch. I asked him and he said to me "I'm glad you asked as I could not tell you about them!!"..... all I had to then do was ask my GP for a private prescription and pay £110 for 30days worth. Sure its a lot of money and some lucky ladies can get them thru NHS but I do get some PIP and use this money as it should be- on helping myself to keep independent....

Please dont give up... you arent fighting doctors or NHS. You are fighting for your health.

I have done a lot of moving... even living for a caravan for a year inbetween selling and buying homes so I know how hard it can be..but dont give up.

Sounds all familiar apart from the cancer god bless you. I am very grateful to the NHS. I have a good job and pay good Ni but I know I absorb significantly more than others but the
Autoimmune keeps on giving (or taking as far as NHS is concerned). Life is hard for everyone so fitting in endless appointments and blood test etc on top of the diabetes checks podiatrist retinopathy tests etc put a strain on the ability to be taken serious at work and fitting in to life. Hey ho end of moan and take
Control. So .... do I need to eliminate gluten or
Just reduce?

 

[maryrachel]

For me it's gluten. So I had severe knee and ankle pain and diarrhoea which I was trying to ignore even though I had to stop every 20 mins. I was also very tired and headachy and read on page 10 of a Google search that all this could be based by gluten. Within a weekof stopping all gluten the ankle and knee pain was significantly improved, the diarrhoea was less urgent and I felt more with it. I later learnt these are all symptoms of being "glutened". Now I have been given gluten twice by mistake, the first time the company believed they had sourced GF product and hadn't. I was in the ladies within 20 mins and ill for 3 days. The second time was in April when I bit into a GF wrap on a flight and realised it tasted too good to be GF, when I checked it stated wheat on the label. Severely upset stomach, cramps and tiredness were a result. I can eat a high sugar GF option with no side effects apart from high blood sugars.

Sorry Cott97 read this after my post. So eliminate for a week and I should see positive results? I will try that. Maybe the gluten causes the additional inflammation. Well clearly it would if I am coeliac. Got to be worth a try

 

[maryrachel]

Sorry Cott97 read this after my post. So eliminate for a week and I should see positive results? I will try that. Maybe the gluten causes the additional inflammation. Well clearly it would if I am coeliac. Got to be worth a try

Oh and just to check. Sounds like since eliminating when you have gluten now the symptoms are even worse? Is that right?

 

[cott97]

I've moved at least once every 3 years all my life! Now 54...

Dont give up. For example.. my de quervains. My GP put me to rheumatology nurse! Senior GP cancelled appt! Pain didnt go despite us buying £55 brace and physio. Back to GP. GP again booked for rgeumatology nurse. Knew this was wrong. So we paid £250 to see a orthapaedic consultant who put me back thru nhs for operation that I need and I got sorted for myself within 4 weeks.

Previous GP ended up paying for gastroenenterologist and he put me back thru nhs quickly to get stomach sorted.

Cancer... had 4 hospitals in total in just 18 months. 1st op messed up. They didnt do the rads. Another hosp did. They badly messed up. Could have died from poisoning. No 1 and 3 and 4 hosp did not want to remove a healthy boob. (No named consultant after 1st hosp). I wrote xmas day to a Professor at my 4th hosp that I had never seen. He read my letter, saw me and agreed. He removed 2nd breast end of April and it was not healthy.... I fell into 3% that have removed and find the supposed healthy one isnt..
All consultants wanted to do was reconstruct ... never listened to me. I am now waiting for a 3rd op to bbe areanged in November by the Prof. He saw my 1st op and straight away said he could sort it better. Other hospitals said they couldnt...

Dont give up. I've not fought the NHS.... I've fought for MY health and MY wellbeing.

I also had fantastic care from pain consultant and team. However he could not tell me about certain meds because my CCG did not allow them to be prescribed. It was only other flat ladies in pain that mentioned thisspecific pain patch. I asked him and he said to me "I'm glad you asked as I could not tell you about them!!"..... all I had to then do was ask my GP for a private prescription and pay £110 for 30days worth. Sure its a lot of money and some lucky ladies can get them thru NHS but I do get some PIP and use this money as it should be- on helping myself to keep independent....

Please dont give up... you arent fighting doctors or NHS. You are fighting for your health.

I have done a lot of moving... even living for a caravan for a year inbetween selling and buying homes so I know how hard it can be..but dont give up.

@donnellysdogs. Well done to keeping going under such tough circumstances

 

[cott97]

Oh and just to check. Sounds like since eliminating when you have gluten now the symptoms are even worse? Is that right?

Absolutely but that's because I don't have them at all now.