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Type 1 Diabetes Treatment/Discussion

13,058 Views | 112 Replies | Last: 4 yr ago by RightWingConspirator
culdeus
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AG
There were some interesting points brought up in the triglyceride thread that I thought it would make a good separate topic.

There are a few interesting posts in there and some treatment plans that are worth discussing if those want to talk about them here.
Quinn
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AG
I've been T1D for a little over 16 years. Currently use a Medtronic Minimed pump with the Continual Glucose Monitor. Have had some issues with the CGM and getting to the sensor to read correctly and connect to the pump. Might just be a bad box of sensors that I got, though.

I bought the book (Diabetes Solutions) that RWC recommended on the other thread, and I look forward to reading over it on my kindle tonight and starting to work toward a new diet plan.
RightWingConspirator
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AG
Hey, guys. I'm glad to answer any questions you may have. I tend to be pretty passionate about the book and the diet, but only because I had Diabetes for so long but never felt equipped with the proper knowledge to control it. The book provided a detailed action plan to control it, which if followed, delivers results I never knew how to achieve.

In the book Dr. Bernstein explained that your blood sugar should never rise above 90 even after a meal. When I first read that I was shocked. I could not comprehend how that was possible. I'd eat a meal and my sugar would spike to something north of 150, and sure it would eventually come down, but only after a spike. Those spikes slowly chip away at your vision/kidneys/nerves/etc.

Now, there could be other ways to achieve the same results, but I'm hard pressed to think of what they are.

I typically check my blood sugars 9x per day. I know where my sugars are at at any point in the day, and I can usually guess within 5 points of what the machine will read. It is that predictable.

I use the One Touch Ultra Smart machine. Here are my meal averages over the last 90 days:

Before b-fast: 87
After b-fast: 83
Before Lunch: 82
After Lunch: 80
Before Dinner: 95
After Dinner: 86
Night: 91

Here is my insulin and typical dosage:

Levemir: 8 units x 2 per day (bedtime and when I wake up)
Humalog: 2 units @ lunch or at other times if my sugar rises above 100
Humulin Regular: 3 units @ breakfast; 6 units @ lunch; 3 units @ dinner

I'm on a fraction of the insulin I used to be on. The Humulin Regular is a critical piece to the high fat / high protein diet as that insulin is not super fast acting. It keeps pace nicely with protein. When I first started the diet, all I had was humalog, which was way too fast of an insulin for a protein diet. I was tanking after every meal.

Let me know if you have any questions.

Oh, by the way, I've had Type 1 for almost 31 years now. Thankfully, I have no diabetes related damage in my body, and I've had plenty of testing to try and find it!
bam02
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AG
RWC-

I'm not a diabetic, but I just want to congratulate you on your discipline and success controlling yours. I know that's gotta be tough. Great job!
AggieOO
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a friends and former teammate of mine is T1D. He's also part of Team Novo Nordisk. He's a very good ultra runner, having won several races. He also recently finished the Tahoe 200 miler. As someone who runs ultras, I know its incredibly difficult to manage nutrition, so I can't even imagine having to add in the extra layer of monitoring your blood sugar.

If you are interested at all, his website is:

http://rundiabetes.com/
Quinn
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AG
I follow him on twitter - its amazing what he is able to do. I start to have lows after about 3-4 miles whenever I run. Definitely an inspiration that shows anything is possible.
AggieChemist
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AG
My wife is 39 and has been a lifelong T1 diabetic. Her A1C had never been below 9. She is extremely brittle and insulin resistant.

Since starting a paleo diet in April, she has finally gotten her A1C to 6.7 and reduced her insulin intake by something like two thirds. It's an almost miraculous turnaround.
Quinn
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AG
Wow, that is great, AgChem!

RWC, I read the intro to Diabetic Solutions last night, and the the first thing that right away stuck out to me is that Dr Bernstein's idea makes sense. The amount of carbs you eat and the amount of insulin you take are the two biggest variables in controlling your blood sugar levels. If you reduce the input of both items, there is a whole less room for error. IF you know you are having 12 carbs and that your body reacts a specific way to certain foods, you are a lot more likely to have an accurate bs reading than if you are guessing on 75-100 carbs and not sure exactly how much insulin to take. It immediately made sense to me.
RightWingConspirator
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AG
Quinn, also be aware that not all carbs are equal. You cannot compare the carbs in mashed potatoes to the carbs in green beans, even if you eat the equivalent amount. The potatoes convert to sugar almost as fast as straight table sugar, so be aware of the types of carbs you eat.

Dr. Bernstein was originally an engineer, so he has a very methodical and formulaic manner of controlling his diabetes. He knows what one gram of carbs does to his sugars, and he knows what one unit of insulin does for his sugars. Once you've isolated the effects of the insulin and carbs, it makes it a very simple calculation to determine how much insulin to give during meal time.

Aggie Chemist, that is great news about your wife, but let her know that she must get those A1Cs down to 4.8-4.9 range. That is a true non-diabetic a1c. I'm not there myself just yet, but at 5.1 I'm closer than I ever was before reading the book.
culdeus
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AG
I've said this before but my wife is also a T1. She had A1C in the 5s for most of her adult life and now they are in the 6s.

She's been a Minimed user, and now a Omnipod user. She also has a Dexcom that she uses off and on.

I think the treatment path of T1 is about to take a complete turn. There are some really exciting breakthroughs in artificial pancreas technology as well as insulin replacement cells on the horizon.

We were lucky that she had two healthy diabetic pregnancies with nearly no NICU stay at all.

Her Dr. now is really at the forefront of T1D research. He's shed some light on some studies about how for the first time they are doing research on patients with good control for their lifetime. There are several things about T1D which he strives to push.

-Assuming A1C is <7 all cause mortality is roughly equal to non T1D. There seems to be some degree of protection from cancer and respiratory deaths like pnemonia which cannot be separated from the fact that T1D get regular blood work, however.

-The biggest rise in mortality is the "Dead in the Bed" syndrome. The expectation is that assuming treatment plans stay the same that this will outpace complication related deaths in T1D by 2050. Dead in the bed is usually brought on by individuals with very high insulin resistance overdosing in the evening and dying in their sleep. For this reason he says people need to understand that having 2, yes, two low blood sugars during a week is not acceptable.

-I've discussed keto and HPHP diets. His assertion is that if you treat T1D with that then you need to be on gluco****e or metformin if Simulin is not tolerated. My wife is not quite on a pure paleo diet, but it's close and is on metformin. I've considered stealing it as guys with T1D on metformin get so ripped up it isn't funny.

-Anyways more thoughts later. **** this disease.
culdeus
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AG
My wife also supplements like a body builder.

-L-Citruline
-Beta Alanine
-Creatine
-WPI (Whey)

are all part of her daily regimine. T1D have very poor protein synthesis The above 4 need extra supplementation as part of a T1D diet. Creatine also helps lower A1C in T2D.

Keep in mind WPI has a tremendous insulin response so if insulin resistant then you might pick a different formulation.
Quinn
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AG
Culdeus, your comments about advances made me think about an incredible story I read by a Cincinnati Enquirer writer about his pancreas transplant and recovery. I strongly recommend this story for any type 1 diabetic (or anyone interested in great writing).

How an organ transplant changed my life.
culdeus
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AG
And for the record, I believe a 6 is ideal A1C. There are tradeoffs with lower A1C which can lead to lower quality of life and early mortality. It is a classic example of letting perfect be the enemy of the good.

The flaw in this thinking, obviously is that a 6 A1C T1D born in the 1980s and diagnosed in the 1980s has not yet lived a full life as that was only 25 years ago. Extrapolating T2D all cause mortality to T1D is very dangerous and is what drives many doctor discussions when the diseases are very different and should have completely different monikers.

Predominately, the thinking behind T2D ACM driving T1D thinking comes from morbidly obese T2D patients dominating the pareto. Well, the single best predictor of any ACM is weight outside of other factors like smoking etc. It's just not that simple.

The single most important thing that ultimately will predict a full life is IMO ensuring total daily dose increments slightly over time. Diet, exercise, and even sexual activity (yes that), drives down TDD.

The day we do get this Mfer beat, and we will get this beat, will probably surpass the day my kids were born.
RightWingConspirator
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AG
culdeus,

Thanks for the post. There are some interesting things on the horizon, but I don't spend a lot of time following it. Type 1 is just something that I've accepted I'll always have. I won't be disappointed if some of these breakthroughs don't materialize. That written, I intend to care for myself so if something is developed that could cure me, my body will be undamaged. What good is a cure if your body is in shambles? There is some diabetes damage that cannot reverse. Neuropathy is one of those complications that will not reverse.

Reasonable people can disagree on Dr. Bernstein's methods, but for me, he's the only one I follow. I consider him to be the world's foremost expert on Diabetes. Add the fact that he's perfectly healthy at the age of 80-something, and the fact that he's still practicing medicine after having Type 1 for ~70 years, I'm convinced what he has to say on the subject of Diabetes control is worthy of consideration.

His recommendations for for A1Cs, and what he consistenly runs his at is 4.6 - 4.8. Using his methodology, which is the only one I trust, and A1C of 6.0 is an average blood sugar of 140. I do not know a lot of non-Diabetics who'd average out at 140; hence, I try to keep mine in the non-Diabetic range. An A1C of 5.0, according to him, is an average blood sugar of 100. My averages are running in the 108 range, or still too high.

His experiences and mine are all anecdotal, but I was falling apart before I started his diet. Now, after 9 years of strict adherence, my doctors are amazed with how good of condition my body is in -- diabetes aside -- not to mention the fact that I've had Type 1 for almost 31 years. I'm in better health than most of the non-Diabetics I meet, but it wasn't always this way.

To those reading the book. Read it. Make your own decisions with whether or not you'll use it. If nothing else he provides a very scientific analysis on food, nutrition, anatomy, and how it all fits together. Some of his wisdom was cutting edge at the time, but I consistently see more articles coming out addressing the virtues of a high protein / high fat diet, and the danger of diets heavy in carbohydrates.

There was an article that came out just a week or so ago (one of my wife's mags - Good Housekeeping?) talking about saturated fat is not the bad guy everyone made it out to be. Bernstein has been saying this for years. At any rate, I digress.
Quinn
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AG
I really appreciate y'all sharing your thoughts/practices, and have a few comments/questions:

quote:
Extrapolating T2D all cause mortality to T1D is very dangerous and is what drives many doctor discussions when the diseases are very different and should have completely different monikers.
I 100% agree and often wish that T1D had a complete different name since so many people assume that it is the same thing as T2D. I get frustrated when people don't know the difference because I'm not fat or old, but it's not their fault they have the same name.

quote:
-The biggest rise in mortality is the "Dead in the Bed" syndrome. The expectation is that assuming treatment plans stay the same that this will outpace complication related deaths in T1D by 2050. Dead in the bed is usually brought on by individuals with very high insulin resistance overdosing in the evening and dying in their sleep. For this reason he says people need to understand that having 2, yes, two low blood sugars during a week is not acceptable.
This is probably the main thing that scares me, honestly. I don't understand that him saying that two lows a week is unacceptable. Lows obviously aren't good, but working out, eating something you aren't 100% sure about the carbs, and other issues can cause lows. I guess it depends on what you consider a low, too. I treat anything 75 and below, but I would guess that RWC has a much lower threshold for a low BS.

quote:
-I've discussed keto and HPHP diets. His assertion is that if you treat T1D with that then you need to be on gluco****e or metformin if Simulin is not tolerated. My wife is not quite on a pure paleo diet, but it's close and is on metformin. I've considered stealing it as guys with T1D on metformin get so ripped up it isn't funny.
I am not familiar with any of these - mind expanding on what they are?

quote:
The single most important thing that ultimately will predict a full life is IMO ensuring total daily dose increments slightly over time. Diet, exercise, and even sexual activity (yes that), drives down TDD.
I think you left out a word - I am assuming you meant to say "ensuring total daily dose increments decrease slightly over time" ? I don't have any research or reading to back me up, but I agree with this.

quote:
There are some interesting things on the horizon, but I don't spend a lot of time following it. Type 1 is just something that I've accepted I'll always have. I won't be disappointed if some of these breakthroughs don't materialize. That written, I intend to care for myself so if something is developed that could cure me, my body will be undamaged. What good is a cure if your body is in shambles? There is some diabetes damage that cannot reverse. Neuropathy is one of those complications that will not reverse.
I definitely take the approach of the bold part. IF a cure is developed, awesome, if not, diabetes isn't the worst disease in the world to have.


I will definitely continue reading Dr. Bernstein's book. I have enjoyed it so far and can tell that I will learn a lot about diabetes from it. It is amazing how little you learn unless you have a good doctor.
I don't think I will go with the 6-12-12 carb diet, but a high protein/high fat diet, with a greatly reduced amount of carbs seems like a good place to start for me. I currently have 18-65-??(Anywhere from 30-150). I would love to have my A1C in the spring in the 5s.
culdeus
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AG
It's tough to do these quotes and make the formats come off correctly.

I also think there is some misunderstanding of how A1C actually works. Because of lack of CGM there was little understanding of how A1C:BG levels. Now I think people understand that A1C is a relatively poor measure of an average.

A1C has a bathub curve effect more or less centered on the time frame about 3 weeks prior to the test. 50% of the average it gathers is within 5-7 days of the 3 week ago period. The rest is gathered mostly from 4-12 weeks prior to that 3 week period. So, for a woman if she got her period or an illness 3 weeks prior to the A1C you probably see a much different effect than if it had fallen 5 weeks prior.

This is why A1C is really a poor marker especially for those with CGM and/or finger sticks of 6-10/day over a long duration. It's more of a diagnosis tool and less of a treatment tool imo.

A1C as a general practice is going out of style. There is minimal evidence that T1D complications are correlated with moderate A1C. The science just isn't there. What you have is alot of junk science out there saying, well this person with A1C of 12 got her legs chopped off, a non diabetic is 5 so if you don't have a 5 and live to 100 eventually you will lose your legs, that's bull****. There's no literature out there about moderate A1C for T1D because those studies just simply aren't ready yet, but the early indications are things are fine especially for eye health which is the first to go.

Lows are really the danger here. Lows are defined by our dr. as anything that requires sugar to be taken. Suspending basal, etc. is not necessarily a low if not treated. Lows cause car accidents, and also increase insulin sensitivity and ultimately DITB.

If you can hold a TDD steady(ish) with a LCHF diet then great. This can be tricky, however. It will theoretically get easier with the newer long acters coming on the market for basal (48-56hrs!), and even easier with the inhalable short acting insulin which is set to hit even sooner.

I am interested in the book. I've read several books on the subject over time. I am curious how he deals with insulin response of protein as it can be substantial. In general, we usually does .5u per 8g of protien and 1u/8g carbs here on a TDD of 35. Anything with a heavy fat content (50% of calories) and will stretch it over 2-4hrs.

Quinn
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AG
quote:
inhalable short acting insulin which is set to hit even sooner.
?
culdeus
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AG
quote:
quote:
-I've discussed keto and HPHP diets. His assertion is that if you treat T1D with that then you need to be on gluco****e or metformin if Simulin is not tolerated. My wife is not quite on a pure paleo diet, but it's close and is on metformin. I've considered stealing it as guys with T1D on metformin get so ripped up it isn't funny.
I am not familiar with any of these - mind expanding on what they are?
Gluco p h a g e or Metformin are similar drugs and was the basis of diabetes treatment for 2000 years. There are derived from the French Lily Flower.

Diabetes is really a disease of the liver. Insulin is basically the stop sign for the liver to halt the processing of protein into glucose through Glucogenesis.

These drugs serve to slow the path of protein into carbs which has a large effect on things like the dawn phenomenon and other unexplainable highs.

Bodybuilders, as you may know used to abuse insulin before HGH was available. They would also take metformin illegally as well. This allowed them to eat tons of protein and not get blood sugar spikes when they were not going in for a lifting session, among other reasons.

Today metformin is a front line drug for T2D. It's gaining acceptance for LCHF T1D diets as they become more mainstream. It has the fun side effect, especially for men, of changing body composition to look more like Arnold. Women see some weight loss, but due to lack of testosterone not as much muscle gain. You will for sure up your lifts on it.
culdeus
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AG
quote:
quote:
inhalable short acting insulin which is set to hit even sooner.
?

There is a product coming out that is an inhaler. It's insulin you breathe. Has a peaking action of as little as 10 minutes in some trials.
culdeus
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AG
The inhalable product is MannKind Affreza.

Others are following behind this with similar products. FDA Stage 3 cleared this June.
culdeus
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AG
The next frontier in wearables will be IRSpec watches.

These are going to be able to distinguish glucose in your blood stream as well as going so far as telling what you had for lunch. Carbs/Fat/Protein each have their own signature in your bloodstream shortly after digestion.

Apple is already working on a glucose sensing watch. Minimed is running towards the same objective.

Ultimately, you will have a closed loop where you have a wearable, and either you use a 56 hour active long acting with cues for inhalers or you keep a minimed/omnipod that takes direction from most likely, yes, your iphone. With minimal to no dosing input whatsoever.

And this is NOT that far out.
Quinn
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AG
Is there a specific site that you monitor updates in research/treatment, culdeus?
culdeus
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AG
Also, you have to wonder the motivations for some of these companies. If you have everyone dropping finger sticks and pumps for long acting and inhalers the entire industry will come crashing down.

One thing we've run into for dosing the mrs. is that she has to use a pump. She takes such low does with her diet and things that the pens and even syringes are tough to dose properly at low does. So I doubt seriously a pump is out of the picture for us for a long time yet.
RightWingConspirator
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AG
culdeus,

You are correct about the HB A1C. It really is a poor indicator of control. I was aware of its limitations, but I mitigate through frequent checking. Like I wrote on the other thread, or maybe it was this one, I check at least 9x per day. Before and after every meal, and sporadically during the day. I'd say that this is a much better indicator of diabetes control than the A1C. In fact, knowing Dr. Bernstein's methodology for converting A1C scores, I created a spreadsheet that tracked all my averages by meal and time of the day. At one point, my A1C - using just my glucose monitor - was hitting in the 4.4 range, which was a little too low. Let's be honest, what good is a simple average (A1C) anyway? I could run my sugar at 50 half the time and the other half run it at 200. My A1C would check in at about 5.6, but it would not reveal the damage I'd done spending half the time at 200.

I've tried to bring my averages up. I have been able to do this primarily through tapering off on the insulin. If 3 units causes me to go hypo, next meal I'll only give 2.5 units. My averages are now all up in the 90s.

In the spirit of full disclosure, I have really wrestled this year with severe hypoglycemia. It isn't unique to the diet, but more unique to me. I tend to be very aggressive with control. If my sugars rise above 100, I'll administer Humalog to bring it down. I feel like I'm firing on all cylinders at 75, but I've been known to do full workouts in the 50s and not even notice. If my sugar rises above 95, I actually start to feel like my sugar is going hyper. Once again, this is something I'm working on as your point on it being dangerous is spot on. Unfortunately I've experienced the dangers of it first hand.

Don't let that deter anyone from the diet or the book. Dr. Bernstein does not have the hypoglycemia issues I have, and nor does anyone else that I know that follows the diet. It's just me, and it's something I'm working on getting fixed.
culdeus
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AG
RWC, have you considered using a CGM? It's worth looking into. The costs are not that bad at all really.

If you have severe hypo it's usually an automatic yes from insurance if it isn't an auto-yes just by default.
culdeus
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AG
quote:
Is there a specific site that you monitor updates in research/treatment, culdeus?

I have some catches on RSS feeds that keep me pretty informed. I also work in an industry/company where both medical and wearable products are tested/developed so I get a little bit of a sneak peek into some stuff out front of the market. Of course Apple is vastly more secretive, but other medical companies are not and are often quite up front about what they are up to.
Quinn
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AG
quote:
RWC, have you considered using a CGM? It's worth looking into. The costs are not that bad at all really.

If you have severe hypo it's usually an automatic yes from insurance if it isn't an auto-yes just by default.


Does your wife have a CGM, culdeus? I feel like mine haven't been super accurate and has a ways to go before its a substitute for finger p ricks. Often it's 50pts off for me. Also, it's slower to recognize highs and lows. I don't want to bash CGM bc its a great advancement, but there is still a lot of room for improvement.

It could be great for RWC since mine vibrates enough to wake me up (and I'm a deep sleeper) whenever the sensor reads a low or high BS (you can set the number that it warns you at and you can set different numbers for different times). I had no issues getting insurance approval, though my new insurance doesn't cover the contour test strips I was using.
RightWingConspirator
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quote:
I feel like mine haven't been super accurate and has a ways to go before its a substitute for finger p ricks. Often it's 50pts off for me.


And this is why I've not gone down the path of CGM. If I'm going to have something attached to me, it better be 100 percent reliable and accurate. I've resisted over many years the recommendations of doctors to go to a pump. Don't like the idea of me being attached to a device. I feel the same way about the CGM, but I'd be open to it if were more accurate.
culdeus
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AG
quote:
quote:
I feel like mine haven't been super accurate and has a ways to go before its a substitute for finger p ricks. Often it's 50pts off for me.


And this is why I've not gone down the path of CGM. If I'm going to have something attached to me, it better be 100 percent reliable and accurate. I've resisted over many years the recommendations of doctors to go to a pump. Don't like the idea of me being attached to a device. I feel the same way about the CGM, but I'd be open to it if were more accurate.

We use the DexcomG4. We have found it to be very accurate after the first day. The sites last 12-18 days.
The most annoying thing about the Dexcom is that you cannot disable the audible alarm at <55. It's simply not an option. You have two options, you can lie to it and feed it a bad blood sugar reading, or shut it down.

Otherwise it's excellent.
culdeus
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AG
Also keep in mind blood sticks can be +/-25. CGM is not a substitute for a one time finger stick. It is meant to establish a trendline and also to build a basal profile without fasting.

It has been exceptionally rare for it to be off substantially, ever.
Quinn
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AG
Have y'all found that your sensitivity to carbs and certain foods as you've gotten older? I'm 27, so not old, but not hs/college age anymore, and I feel like certain things send my BS sky rocketing where I could cover the carbs with insulin before.Maybe its just because I've been reigning things in and paying close attention lately, but I was curious is anyone else experienced this.
Quinn
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AG
Also, I received this email this morning from JDRF.org

quote:
First-Ever Person with Type 1 Diabetes Receives Encapsulated Stem Cell-Derived Replacement Therapy

JDRF-funded partner ViaCyte, has for the first time ever implanted a person with type 1 diabetes (T1D) with an experimental encapsulated cell replacement therapy called VC-01. The person is participating in a trial to evaluate the safety and efficacy of the VC-01 product candidate, a potential replacement source of insulin-producing cells.

Encapsulated cell replacement therapies have the potential to fundamentally transform the management of T1D by restoring a person's independence from insulin injections. The stem cell-derived cells are designed to replace a person's lost insulin-producing ability while being protected from the ongoing T1D autoimmune attack.

This day would not have been possible without JDRF-funded years of stem cell research and the insights learned to protect them from the autoimmune attack. Thanks to our many supporters who helped make this historic day a reality. Let's celebrate what we have together achieved in our fight against T1D, as we look forward to the full enrollment and results from this study which could move us one step closer to discovering a new and effective treatment for T1D. Read more here.
culdeus
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AG
Excellent, also, I saw somewhere that they were also going to try some splits with these patients trying to stay gluten free. There is some thought that gluten can feed the auto-immune response. Especially in white patients.
Quinn
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AG
Oh gosh, I hope I wouldn't have to go gluten free for this... (not judging anyone that is gluten free, just saying I like my gluten foods and it would be pretty tough to give them up)
culdeus
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AG
Gluten seems to be the most likely trigger for the t1d response most research is leaning that way in rats at leasr. Any stem cell cure will nearly certainly require some level of gluten cosumption limits.
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