As part of an ongoing effort to convince doctors and policymakers to (imagine this!) consider the real-life experiences of diabetics when giving out dietary advice to diabetics, a group of researchers including Dr. Richard Feinman have created The Patient’s Voice Project.  My good buddy Jimmy Moore is involved as well.  Here’s an announcement they’d like to share:

The Patient’s Voice Project is an effort to collect first hand accounts of the experience of people with diabetes (type 1 and type 2) with different diets.  If you would be willing to share your experiences with diet as a therapy for diabetes, please send information to Michael Turchiano (mturchiano.pvp@gmail.com) and a copy to Jimmy Moore (livinlowcarbman@charter.net). Please include details of your diets and duration.

Indicate if you saw a physician or other health provider, what their attitudes were and whether you be willing to share medical records.  We are particularly interested in people who have switched diets and had different outcomes.

Finally, please indicate which factors influenced your choices (physician or nutritionist recommendations, information on popular or scientific publications, etc.)

Thanks for your help.  The Patient’s Voice Project will analyze and publish conclusions in popular and scientific journals.

Michael Turchiano
Scientific Coordinator

I know from the comments section that many of you have managed to control diabetes by ignoring the lousy recommendations of organizations such as the American Diabetes Association.  Send in your story and make your voice heard.

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25 Responses to “Diabetics: Make Your Voice Heard”
  1. Greg says:

    I’m all for this, but I think we need an apostrophe in there somewhere, don’t we? “The Patient’s Voice”? Or “The Patients’ Voice”? Wait, that last one would be “The Patients’ Voices”…

    They didn’t consult me on the name.

  2. Kevin says:

    Great idea. I will partipate for sure and will encourage others as well.

  3. marilynb says:

    An old friend of mine recently told me her doctor had said she would be diabetic soon but offered her NO diet advice. Isn’t that shameful? But I invited her to be my cabin mate on the 2012 Low Carb cruise and she accepted, so we’ll get her straightened out! :)

    Excellent idea.

  4. Bawdy says:

    GREAT IDEA!!!

    I had lunch with a friend yesterday who has diabetes and is on insulin. She’s about 5’2″ and quite tiny … not the obese diabetic that seems to be the common perception. Goes to show that you don’t have to be obese to be diabetic, and that thin doesn’t equal healthy.

    Anyway, she’s on insulin, and yet for lunch she ordered (and ate) a Monte Cristo sandwich, which is made up of 2 thick slices of French toast bread, ham, cheese, and sauce. Before she took each bite, she smeared jam on it. Oh, and French fries on the side.

    And yet she says she “controls her diabetes by controlling her carbs.” Huh?

    I’ve known too many thin type 2 diabetics to believe obesity is the primary cause.

  5. sharon says:

    What a great idea! I’d love to see the results.

  6. Tom, thanks for the heads up. I have been every Type there is Pre/Type2/Type1 now. I was lookin for your take on the “safe starch” debate but first found this gem. I will spill my guts to em. Ok, back to looking for your take…here safe starch…here safe starch…

    I commented on safe starches in Jimmy Moore’s post about them:

    http://livinlavidalowcarb.com/blog/is-there-any-such-thing-as-safe-starches-on-a-low-carb-diet/11809

  7. Sarah says:

    This is the first time I’ve ever been a little sad that I’m not a diabetic. It will be interesting to see what comes of this.

  8. chuck says:

    This reminds me of a quote I heard somewhere:

    “Those who say it can’t be done shouldn’t interrupt those doing it.”

    So true.

  9. Paul451 says:

    Why is it that I already have a good idea as to what the results of this are going to be? : – )

  10. Judy B says:

    Would you like to hear the recommendations for my late father?

    Send them in. Might be useful.

  11. Mountain says:

    I don’t know why this wasn’t done earlier. This is going to be huge. Great idea.

  12. That’s a great idea!

    I’m not diabetic, but I’ve been testing my blood sugar against various food items, and I’ve learned what I can choose to eat or not to eat in this phase. Down 20 lbs in 6 weeks.

    This project should serve to define more clearly the way people with diabetes are told to eat, and what works for them.

    Thanks for the info, Tom.

    That’s the hope. Maybe some data from people who’ve changed their diets will change some minds.

  13. Peggy Holloway says:

    Will they accept stories from people like me who was marching towards Type II, with a major family history, but circumvented by going low-carb? I was definitely within months of a diagnosis in 2000 when I changed to a low-carb diet, so I have never had an abnormal blood sugar reading. When I tell people I don’t eat sugar, starch, or grains and they ask if I’m diabetic, I say “no, but I would be if I ate those things.”

    Send it in. If it doesn’t fit their criteria, no big deal.

  14. Quinn says:

    Mom, at 82, has been a Type 1 diabetic for 30 years, as was her mom. She tests her blood glucose probably 6 times each day and tailors her insulin dose accordingly. She’s fastidious about it, and her docs say she’s about the most well-controlled patient they have ever seen.

    She came to me the other day and admitted that she had been a closet low-carber for the past few weeks, after hearing me rave about Fathead the Movie and Taubes and Eades’ books. She said she was shocked that now, after meals, she doesn’t need ANY insulin. Only takes the long-acting insulin once a day now, instead of after each meal and her blood sugar level remains virtually constant throughout the day, and no longer dips alarmingly low during the night. Says she’s never felt better, and is no longer a slave to the swings of BS (blood sugar).

    Outstanding. Now we just need to get a few million other diabetics to try the same approach.

  15. Ricardo says:

    Hi Tom. Just had a quick question. I was just wondering if you eat Organ Meats and if you think organ meats are healthier than muscle meats. Ive seen one of Sally Fallons videos and i found them quite interesting in it she mentioned that organ meats have more nutrition like Liver, than there is in steak.

    I think organ meats are good for us, but I don’t like liver so I don’t eat it — unless my wife puts it in a stew, chili, something like that.

  16. Harold Aardsma says:

    Just sent in my story. So often I see people I know are diabetics eating pasta and cake and I just want to shake them and scream at them, “Don’t do that!” Hopefully, this is a better way of getting the message out and should keep me from getting arrested.

  17. Cathy N says:

    This is such a great idea. How exciting.

    This morning on the Early Show there was a doc recommending people keep their triglycerides under 150 by avoiding red meat and saturated fats, and should consume “healthy” oils like Canola and olive oil. So man made industrial Canola oil but not Coconut oil or butter? So she makes it sound like fats cause high triglycerides. She didn’t once mention anything about sugar, bread, pasta, candy, or other triglyceride-raising, liver punishing, diabetes promoting foods. Scary.

    The doctor is an idiot. What does red meat have to do with triglycerides?

  18. Tony Dickson says:

    Saddest thing I saw was the reception after the funeral of a woman who died in her 40s of complications of diabetes. They had a table set up with nothing but cakes, cookies, donuts and other pastries as far as the eye could see. I could only shake my head.

    Oh, boy …

  19. Galina L. says:

    Ricardo,

    I recently found some new family-friendly way to eat beef heart. I cook it together with marrow bones when I make a bone broth, then grind it in a meat grinder, and add it to a raw ground beef. I have to use my faithful hand-grinder anyway because I also pull through it a grass-fed fat that the butcher gives me for free when ! buy their ridiculously lean ground beef. I used to add some bread crumbs to a meat-loaf (by absorbing juices bread made meatloaf juicier), and the ground cooked heart is a very nice substitute for that purpose.

    Liver is very tasty if cooked very-very lightly on one side, then on another in a not-refine coconut oil or butter. It is a very important balance you have to achieve – raw liver testes unpleasantly, overcooked testes harshly and strong. Then I remove the liver to a plate and let it rest for 10 minutes, put some coconut milk in the skillet used for cooking liver , reduce it and use as a souse. I also make liver pate and liver with saute onions. For pate it is better to quickly boil liver.

    Probably, I wouldn’t like to use liver in a chili . On my opinion, chili is excellent with a beef tong and/or heart.

    I also left some comment about how to make a meat jello (similar to a head cheese ) on a Hyperlipid. It is cooked with all sorts of meats, organs or not (but kidneys and liver are usually not used) and pigs feet or jowl meat.If somebody is interested, I will post it here too.

  20. Underground says:

    One of the main arguments against eating organ meats was always that they’re mostly very high in cholesterol. Once you throw that out, there’s not much reason not to if you like them. There are some good bits in there. I haven’t had chitlins in a pretty good while.

    Tracked my blood sugar this week. All week the one hour post meal reading was never over 120, and went right back down to <100. Today I ate at the Chinese restaurant. WOW. No rice, and I was trying to avoid the worst of it. My BG was 171 at just under an hour!

    I didn't get a chance to measure it later since I got busy, but I won't be doing that again any time soon.

    That’s why it’s good to check.

  21. Katy says:

    I love liver, but would now only eat it if it came from a clean source. Fry up some bacon so you have the grease. Dust liver slices with seasoned almond flour and fry in hot bacon grease–this is quick, turn when the blood rises to the top. Don’t overcook or it’ll be shoe leather. Top with the bacon, if you haven’t eaten it yet:-)

  22. darMA says:

    Thanks to your heads up, I sent in my success story, giving credit to Dr. Eades, Dr. Davis and the wonderful people on the diabetic forums I follow and absolutely ZERO to my doctor, who has shown no interest whatsoever in how I got my A1C down to 4.7 after ditching the meds. He is also doctor to my 2 diabetic sisters who are both on 2 meds. I wish just once I would hear one of them say he asked them why the hell they aren’t doing whatever I did to get off the meds.

    P.S. I bet you’d like liver the way I cook it. I never thought I would ever like liver because growing up my mother really cooked it to death. I’ve since learned a much better way to cook it (in a pat of butter, a dribble of coconut oil, saute some onion with a good sprinkling of sage, throw in strips of liver; when the outside of the liver is brown and the inside is still pink, drizzle in some chicken stock with a touch of white vermouth, let the sauce cook down some). Served over cauliflower/parsnip puree – yum, yum.

    Maybe, but it would have to cover the taste quite a bit.

  23. Galina L says:

    The good thing about organ meats – the price. Even grass fed variates are really affordable. I noticed also that kidneys from grass-fed animals are two times smaller than regular ones.

  24. gallier2 says:

    Good liver advices here.One point I would like to add, if you want to start to get the taste for liver, be careful to only start with the best tasting livers. In my opinion the best livers are calf and rabbit, anything else has a too strong taste. And to add again to the advices you got from Galina and others, don’t overcook them. They must be rare. When it gets that brittle texture, it’s overcooked and gets a bitter taste.

  25. Lizzy says:

    Interesting comments about offal. I love my liver cooked longer so it is tough and chewy lol. I have never had to develop a “taste” for it as I have eaten it since a baby. My favourite is Ox liver which is very strong tasting. I also love kidney and heart. I love the chewy texture of heart meat. I make stew with it with lots of veggies and tomoato in.

    I find it hard to comprehend that other people don’t like offal and even freak out about it. Eating it was normal in our house. I would recommend chicken livers cooked with onions and paprika as a way into liking liver.

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