Gluten free toast no spike

Linagirl

Well-Known Member
Messages
457
Type of diabetes
Don't have diabetes
Hello guys hope you have all had a great weekend.

Had breakfast in my favourite cafe in Dartmouth yesterday and had a slice of gluten free toast with no spike! Was v happy.

How's everyone's weekend been?

Emma
 
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Lamont D

Oracle
Messages
15,793
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Long and tiring!
Having a quiet day, browsing, watching footie!

If the toast doesn't spike you, then, happy days!
 

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi Emma,

Sounds great. Was it white gluten free bread? My Mum buys gluten free bread, will give it a try.

Hope you guys are all good? x
 
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Linagirl

Well-Known Member
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457
Type of diabetes
Don't have diabetes
Hey kaz it was in a fab cafe in Dartmouth and suspect it was home made, it was brown. Xx
 
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Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
I'm ok too thanks. My Endocrinologist has removed my diabetes diagnosis and says I now just have RH. Thinks I'm doing good with my diet and has discharged me. I've reduced my carbs, but not very low carb and it seems to be working ok at the minute. With very low carb I produced ketones and they make me feel rotten - extremely thirsty, very tired and generally unwell. When I re-introduced a few carbs these symptoms went away and I had more energy. I have to be careful to stick to routine and watch out if I do extra activity but overall I've seen an improvement. Are you still getting good results with very low carb? Any more news on whether you've got Hughes Syndrome? xx
 
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Linagirl

Well-Known Member
Messages
457
Type of diabetes
Don't have diabetes
I am doing well at the moment. I haven't measured ketones but I am suffering from
Thirst and tiredness but that could be so many things it is really hard to know.
I'm seeing the rheumatologist next week so I'll Update you all then. I'm
Hoping that much of why I feel rubbish is this silly clopidogrel and that my Hughes if indeed I have it can be managed with something less aggressive such as mini aspirin. We shall see!!! Xx
 
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Linagirl

Well-Known Member
Messages
457
Type of diabetes
Don't have diabetes
I am doing well at the moment. I haven't measured ketones but I am suffering from
Thirst and tiredness but that could be so many things it is really hard to know.
I'm seeing the rheumatologist next week so I'll Update you all then. I'm
Hoping that much of why I feel rubbish is this silly clopidogrel and that my Hughes if indeed I have it can be managed with something less aggressive such as mini aspirin. We shall see!!! Xx
 
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Lamont D

Oracle
Messages
15,793
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
I'm ok too thanks. My Endocrinologist has removed my diabetes diagnosis and says I now just have RH. Thinks I'm doing good with my diet and has discharged me. I've reduced my carbs, but not very low carb and it seems to be working ok at the minute. With very low carb I produced ketones and they make me feel rotten - extremely thirsty, very tired and generally unwell. When I re-introduced a few carbs these symptoms went away and I had more energy. I have to be careful to stick to routine and watch out if I do extra activity but overall I've seen an improvement. Are you still getting good results with very low carb? Any more news on whether you've got Hughes Syndrome? xx

That's good that you have at last got a diagnosis.
Don't get that he has discharged you! You should get another appointment, just in case.
What has your endo said about what you should do regarding RH?
Aren't you going to have tests?
 

Linagirl

Well-Known Member
Messages
457
Type of diabetes
Don't have diabetes
Yeah seems strange to me too Nosher! Seems they want to discharge as quickly as possible. All very odd. Hope you can get to see someone for tests etc Kaz as you may at some point need more help. Xx
 
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Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Really pleased to hear you're doing well Emma. Hope you get on ok next week. Keep us posted.

My Endo doesn't think I need further tests as I have a RH diagnosis. He said the diet I was following was good and to continue experimenting with foods. He mentioned a couple of different medications (one was metformin and I can't remember the other) but doesn't feel I need them at this stage. He said I'll probably never completely eliminate my symptoms, but as you age your body naturally produces less insulin and therefore the RH should improve.
 
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Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
I can go back and see him any time I want. Unfortunately now I have a diagnosis, the insurance company won't cover it so it'll be at my cost. My GP could always do a referral on the NHS to see the same consultant if I need further tests in the future.
 
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Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
Hey, well done for getting the diagnosis!

Make sure you get a copy of the consultant letter to your gp.
Sometimes they send you a copy, sometimes they don't - although if it was private you definitely should get it. :)
Mine never send me a copy (nhs), and there is one particular letter i really want to get a copy of, but i forgot to ask for it last time i saw the nurse.

I really recommend you keep a folder on this.
Every appt, every test, print outs of the results.

It is amazing how easy it is to forget details.

Am well chuffed you have a diagnosis! :D
 
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Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Thanks Brun!

I have a copy of all the consultants letters and test results to keep. My 24 hour urine collection was perfectly normal (right in the middle of the range for everything they tested) and so was the 24 hour ECG, which is good.

It was a relief to know I'm not diabetic (although I am pre-diabetic). He said we'll let my hba1c determine when I reach that stage and I'm hoping that will be some time yet! Of course, I still wish I didn't have RH and don't understand how it suddenly became so problematic but I guess I may never know.

I'll just keep plodding on, make the most of the good days and take it easy on the bad.

Thanks again to you all for your advice. I was a little overwhelmed and lost for a while (still am some days!), but knowing you guys are there to offer advice and support makes it seem a whole lot easier. Not sure where I'd be without you all xx
 
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Lamont D

Oracle
Messages
15,793
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
I can go back and see him any time I want. Unfortunately now I have a diagnosis, the insurance company won't cover it so it'll be at my cost. My GP could always do a referral on the NHS to see the same consultant if I need further tests in the future.

Ok that's good!

Why won't your insurance cover a blood glucose disorder?
Sorry for being nosey! Just find that weird! (not like us!)
Get your GP on board, it will benefit you in the long run!
Ask your GP to try you on sitagliptin, as this really does help with control.
I have read and seen a video about the drug in America and my endo has had talks with the pharmaceutical company about tests. It has helped his other RH patients!
Also try and get your GP to put you on the diabetic register and then get free prescriptions etc. But you have to persuade him/her like I did mine.
That will help with your testing and experimenting, with using so many testing strips for your monitor. Be cheeky, like I was! It works!
 
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Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Like diabetes, RH isn't covered by the policy. They only cover to the point of diagnosis. We get the cover through my husbands work and it probably isn't the most comprehensive cover. I'm so pleased we had it though as I was seen within 2 weeks and have a diagnosis. The appointment with the nhs Endo was a 4 month wait and I was discharged after the first consultation and a simple thyroid test!

I spoke to my Endo about Sitagliptin but he said he would be very reluctant to put me on it. He explained the way it works and said that as a result it reduces your appetite. I'm very close to being under weight after losing over a stone since March and therefore can't afford to lose any more.
 

Lamont D

Oracle
Messages
15,793
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Like diabetes, RH isn't covered by the policy. They only cover to the point of diagnosis. We get the cover through my husbands work and it probably isn't the most comprehensive cover. I'm so pleased we had it though as I was seen within 2 weeks and have a diagnosis. The appointment with the nhs Endo was a 4 month wait and I was discharged after the first consultation and a simple thyroid test!

I spoke to my Endo about Sitagliptin but he said he would be very reluctant to put me on it. He explained the way it works and said that as a result it reduces your appetite. I'm very close to being under weight after losing over a stone since March and therefore can't afford to lose any more.

Yes, I now understand his reluctance to prescribing you it now!

Except, that since you posted, I can't find anything about that in the pharmaceutical companies tests, trials and patients notes, for side effects and weight loss and appetite loss.

I do know that because of our diet it's natural to lose weight, but that can be balanced by eating more protein and full fat. I eat a lot less since being prescribed but that's my choice and being in ketosis.

I could understand about metformin, but that is known to be a appetite suppressant and should not be prescribed in my opinion for RH ers because our hba1c and blood glucose levels are normal, and eat to be well.

Read up on Sitagliptin, I wish I could link the video but it was put on another thread.
 

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Thanks Nosher. I can't remember exactly what he said about Sitagliptin but I think it slows down digestion and therefore slows down the release of glucose, which helps to prevent the blood glucose spike. As a result though, you feel fuller for longer and don't need to eat as much. Apologies if I have that wrong, but I think that was the gist of it.

I don't want to take any med at the minute if I can help it. I tend to get side effects from everything I take so it puts me off! I really don't think I need it. My fasting bg is mostly low to mid 5's (down from high 5's) and my 2 hour post meal readings are mostly 6's or 5's with the odd 7. I do sometimes spike higher than I'd like at 1 hour, but I am still experimenting so I can't get it right every time!

Thanks to you giving me a little "talking to" a while ago, I feel much less anxious about it all. I still get stressed when I get confusing results, but I try to tell myself that some days will be like that and tomorrow will be better! x
 
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lindisfel

Expert
Messages
5,659
Hi Kaz,
Don't you believe it Kaz, I am 76 and produce a lot of insulin when I have carbs! :)
atb
Derek


Really pleased to hear you're doing well Emma. Hope you get on ok next week. Keep us posted.

My Endo doesn't think I need further tests as I have a RH diagnosis. He said the diet I was following was good and to continue experimenting with foods. He mentioned a couple of different medications (one was metformin and I can't remember the other) but doesn't feel I need them at this stage. He said I'll probably never completely eliminate my symptoms, but as you age your body naturally produces less insulin and therefore the RH should improve.
 

Lamont D

Oracle
Messages
15,793
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Thanks Nosher. I can't remember exactly what he said about Sitagliptin but I think it slows down digestion and therefore slows down the release of glucose, which helps to prevent the blood glucose spike. As a result though, you feel fuller for longer and don't need to eat as much. Apologies if I have that wrong, but I think that was the gist of it.

I don't want to take any med at the minute if I can help it. I tend to get side effects from everything I take so it puts me off! I really don't think I need it. My fasting bg is mostly low to mid 5's (down from high 5's) and my 2 hour post meal readings are mostly 6's or 5's with the odd 7. I do sometimes spike higher than I'd like at 1 hour, but I am still experimenting so I can't get it right every time!

Thanks to you giving me a little "talking to" a while ago, I feel much less anxious about it all. I still get stressed when I get confusing results, but I try to tell myself that some days will be like that and tomorrow will be better! x

That's ok, Kat.
Just trying to help.
If not taking meds is great, so if your happy, then I'm happy.

Yes, sitagliptin does reduce the spike and on my last OGTT, my spike was just over 8! When it has always been over twelve (ish).

Glad your fasting levels have reached normal levels, now you can keep them there!
Keep it up!
 
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