201. Let those with Diabetes Speak for Themselves

In this blog, I will highlight the views and experience of those who have succeeded in coping effectively with their condition. Invariably this has been achieved by reducing consumption of sugar and carbohydrates and replacing them with healthy fats (LCHF). Usually this has been in direct conflict with the advice from the official sources.

In September 2015, the American Diabetes Association posted the following question on Facebook:

“What was your most recent blood glucose reading?” (1).

There were over 800 responses, many of which were highly critical. Here is a selection:

Carolyn Fisher 81“Because I DON’T follow the ADA’s advice! The ADA diet given to me by a diabetic educator told me to eat 165 grms of carbs per day and she “had to follow the ADA guidelines”. Your advice is killing people! Do you see all these comments? All of us that have normalized our BS’s from the knowledge of Dr. Richard K. Bernstein, MD and are succeeding in achieving great blood glucose control. He should be the Head Medical Director of the ADA if your mission is really to help people. Wake UP!”
Andrea Athey“My fasting bs was 105. I’m following low carb high fat diet. I’ve been grain and sugar free for three months. Previously, may average fasting glucose was 160. This was when I was following the ADA recommended diet given to me by a diabetic nurse. What are you guys doing? Trying to kill us?
Catherine Chandra Watkins 77“Before lunch (I’m a T2). How do I achieve that? I use low-carb, high-fat eating and intermittent fasting to reach actual normal blood glucose readings. And I have more energy and brain power running on ketone bodies than on glucose. I don’t understand, ADA, why you tell people who can’t tolerate carbohydrates–a nonessential macronutrient–to eat that which will cause them severe problems. I totally don’t get it. LCHF is completely sustainable and satisfying, once you are in ketosis and the carb cravings stop. And I’ve lost 70 pounds painlessly. Why do you continue to tell diabetics to poison themselves? ?? ???”
Maria Jerry James“On Dec 8 2014, I left my Dr in tears. My a1c was 8.9, my vision was terrible with multiple hemorrhages, I was taking Lantus 50 u twice a day, at least 5 shots of R 10 u per my ss, I also took 2000mg Metformin, 8 mg Glimerpride, a stomach and a bp pill as well, and I was morbid obese. I came home and found a fb group called Reversing Diabetes, who had put tons of hours of research in Low Carb High Fat way of eating. I loved the numbers this bunch was having so I thought what the heck. Within the first month I was off all insulin and most of the meds. Today, I am med free!! My a1c is 5.0, I have lost 60 lb, my eyes are clear, and my labs are wonderful. Take the bull by the horns people, stop feeding this disease. I lost my 64 yr old aunt to this disease, not because her bs was high, but because she took so much insulin to keep it normal.”
Debra McElyea Rainey“The ADA diet is responsible for the deaths and maiming of many diabetics. If you want to live with diabetes and be healthy, low carb is the only way.”
Vikki Rostoll-Olivier“I have been a Type 1 diabetic for 28 years, and am now 31. After all those years following the death sentence ADA diet, I eventually lost the sight in my left eye due to Retinopathy. Who I actually have to blame is the ADA, but they don’t care. They are not the one who has lost sight. Thank goodness for Dr Bernstein, as I now have sugars that are 4, and almost never go over 8 after a meal. The ADA diet is a death sentence!!!”

The NHS Choices provides information on a range of health-related topics. One of these is entitled:

“The truth about carbs”

by dietitian Sian Porter (2). I did a blog about in October 2014 (3). In particular I repeated a number of comments on the article which were critical of the points in it. Here are some examples:

“Have the NHS been infiltrated by certain members of the food lobby or are they really this ignorant? No wonder this country has an obesity crisis!”
“Dreadful article. Old 70’s health myths dressed up as common sense advice. I do not understand how this is allowed to be put out as public information from the NHS.”
“Hello Sian, I am concerned that you are pushing the low fat dogma despite the relentless science and research that shows that the dogma is nonsense. The NHS has a public duty to admit low fat calorie obsession is a dead end. You do not deal with hormones, metabolism and gut health. Food quality and healthy metabolism are key to health, not carbs. Please stop defending the mistakes of the past.”
“This commentary is full of inaccuracy, fallacy, opinion, and error.”
“I have been low carb for over a year. Result ; lower triglycerides, ldl static, hdl increased, fasting blood sugar lowered, energy levels increased. Oh and not to mention two and a half stone lighter. I eat lots of saturated fat and enjoy it. Am i constipated? No. You need to examine the huge and growing scientific evidence on low carb high fat diets.”

In the light of the very damning comments I would have expected there would have been some attempt to answer them. But instead the comments have been removed. However it is still possible to award a rating on a 5-star scale. The result: 666 out of 925 were for a single star!

In August 2015, there was an article in the BMJ in which Dr David Unwin and Dr Simon Tobin reported on how one of their patients had successfully achieved weight loss and effectively overcome his Type 2 Diabetes (T2D) by cutting out sugar and reducing carbohydrates in his diet (4). As a result he was able to stop all 4 drugs he had been taking and the paper made a plea for a concerted effort to reduce the amount drugs being prescribed. This obviously struck a chord with many people who responded with their views and experience. Here is a selection:

Katherine H Aull. PhD student“I was put on a low carb, high fat diet due to neurological complaints. I am now off all medications and remain asymptomatic, so long as I follow the diet. Further, I lost 15kg and am now effortlessly maintaining a weight I hadn’t been since primary school. I eat heroic doses of saturated fat, salt, and cholesterol, with absolutely no whole grains. Yet my blood cholesterol is normal, with a total: HDL ratio under 2.4.”
Debbie Wright-Theriault, Hair Replacement Specialist/ADE (associate diabetes educator)“I’m a 49 year old type 1…I cannot understand the current recommendations in my country by the ADA on giving 30-60 carbs per meal. It’s a proven, scientific fact that carbs raise glucose….and high glucose causes an entire slew of complications such as blindness, loss of limbs to neuropathy and kidney failure…so why recommend eating so many carbs?? I eat 30 grams or less of carbohydrate per day and all those are from non starchy veggies. I am well nourished, never hungry and my last 5 A1C’s have been in the 4’s. ..with the last one 4.8..why is this way not prescribed to patients? I eat delicious foods made with almond flour instead of wheat flour…with no sugars and no unhealthy ingredients…they are easy to make, recipes are readily available online and in cookbooks…..so why the high carb recommendations? It’s akin to telling a child with a peanut allergy to continue to eat peanuts and just keep the epi pen handy. With the high carb recommendations of the ADA, people have to inject massive amounts of insulin and still have no control over roller coaster blood sugars…is that healthy? I think not. Please…someone…review these current guidelines that are slowly killing people and start saving lives!!”
Angela M Erickson, Registered Nurse“I absolutely agree with the recommendation given for carbs being a bad idea. I have been type 1 for over 22 years. A couple years back I had many beginning complications. High cholesterol, numb areas in my feet, hormone imbalances, and an irregular heart rhythm to name a few. I decided to adopt Dr. Bernstein’s protocol. I now eat 30g of leafy green carbs a day, or less. I have an a1c of 4.9. I’ve regained the feeling in my feet…my PCOS has resolved, and I finally have hope for the future. I just wish someone on my medical team had come to me with carb restriction as an option, long ago.”
Sarah J Hallberg, Physician“As an obesity medicine physician who uses low carb high fats diets in all of my patients I cheer the publication of this article. Nowhere in medical school or after is the concept of taking someone OFF medications discussed. Why should we? Patients are supposed to just get sicker, right? This attitude is not only pervasive but more important WRONG. They get sicker only when they are taught to eat a diet that makes them sicker. Unfortunately, this is the low fat diet pushed by all so called “patient advocacy groups” such as the American Diabetes Association. When taught to eat a whole foods low carb high fat diet patients do get better and “deprescribing” is a daily occurrence in our clinic. We need to stop using medicine to treat food! Doing this requires teaching the patients why and not just telling them what to do. The idea that patients don’t want to or are not capable of change is not true if you teach them to do something where they can actually see change.”
Paul E Buchanan, Director, Team Blood Glucose
“I undertook a period of intense study and learnt all I could about the action of insulin, learning that taught me to completely disregard the standard model of care offered to people with diabetes in the UK, to disregard the published advice of the leading charities that work in diabetes in the UK and to adopt a low carb, high fat lifestyle.Within 6 months I had completed my first Olympic Distance Triathlon.Reducing insulin use and modifying behaviour is critical to a long-term and successful management of type 1 diabetes.
I then founded teambloodglucose.com to help other people with diabetes learn how to live more active lives with diabetes. We now have a formal partnership with Imperial College, London. We conduct in the field research and publish peer-reviewed articles and papers on activity and diabetes.
Within three months I had reduced my HbA1c to 5%, self-taught carb counting and worked out all of the ratios I needed to manage my diabetes.
“In response to a diagnosis of Type 1 Diabetes at the age of 44 with a fasting HbA1c of 13.6% I was initially mis-diagnosed with Type 2 Diabetes. Some weeks later I was re-classified as Type 1 and prescribed insulin. I was given no training nor offered any education as “it will take eighteen months or so for you to stop ‘honeymooning’ and there is no point in trying to work out any ratios or tech you to carb count as it won’t help'”. In response to the question about how I should manage by glycaemic control with an ambition to complete the London Marathon I was advised to do nothing more strenuous than a gentle walk once a day as there was no telling what exercise might do to my blood glucose levels. This was in 2012″.

The Low Carb Diabetic website provides guidance and information for those suffering from either T1D or T2D based on a diet which has a low carbohydrate content (5). Many of the contributors have followed the advice with great success. Here are some of the stories:

Janet
“I had no real advice on diagnosis, just told to ‘eat a healthy diet’. I have a friend who has been type 2 for a long time and I knew you were supposed to check your blood sugar. I asked for a meter and was told I would be given one by the diabetic nurse when I saw her eventually. Meanwhile I did some reading online, was devastated to find out the implications of uncontrolled diabetes and felt my life was over. However I was lucky that within less than a week I had found this site and also Fergus who I emailed about his lowcarb bread. That was the beginning of hope for a healthier future for me. I cut out carbs drastically, when I got my meter I found that just one piece of Burgen bread sent my blood sugar to double figures, as did one weetabix and a drizzle of milk. That was it; I knew that there had to be something odd about the standard dietary advice if I wanted to get good bs control.My GP says that he can’t remember a diabetic in the practice with such a low hba1c for a long time, but is very evasive when I ask about the madness of the standard dietary advice, and I am just told the famous mantra….’If it works for you…’ If it works for me why not for others? I know that ‘we are all different’ but the present dietary advice to eat lots of carbs, particularly when many are also told not to test is madness, testing is essential for everyone, only then do you find out what you can or can’t eat.”
At my first hba1c, after 2 months of strict lowcarbing, it was at 7.2, I know it would have been much higher if it had been taken at diagnosis. My hba1c has since dropped gradually, my latest being 5.4. My bloods are good, kidneys perfect, my hdl cholesterol is 48% and triglycerides are 0.5. I eat cream, butter and cheese etc. I have also lost more than 4 stones in weight. I feel much better and look it too. People always ask how I did it and can’t believe it sadly when I say I don’t eat many carbs but I do eat fat. I was always a keen cook and after initial despair at what was I going to eat, I now relish the challenge of adapting recipes and inventing new dishes which fit into my new lifestyle.
“My diabetes was diagnosed by chance in 2009, when my GP asked me to have a fasting blood test due to raised BP. This came back at 7.1, I was asked to have another one which came back at 9. I have since found out that another blood test in 2006 showed a fasting level of 6.6, but for some reason I was never informed I was pre-diabetic. Knowing what I know now my sugars would have been running wild during that time. I had been overweight for many years but always active, people often said I should have been skinny as I was always busy, but at the time of diagnosis I weighed more than 16 stone and whatever I did, it didn’t seem to shift. I also ate lots of fruit; sometimes seven pieces a day, granary bread, pasta and rice, plus fruit juice. I was literally welcoming diabetes but didn’t know it at the time, had I known I was pre-diabetic I might have done some research and avoided becoming a fully paid up member of the club no one wants to join. Just before diagnosis I remember having a really ‘carby’ day when I felt so sleepy and my feet were burning, as if on fire, couldn’t get rid of it for over a day, I am sure these were the effects of very high sugars. Looking back I often felt sleepy after lots of carbs, but put it down to a demanding job and life.”

Kate
“My name is Kate, a lively 63 years young, living in Cornwall with my husband and dogs, lots of family and grandchildren close by. My Mother, who sadly died in June this year, aged 92 had Diabetes Type 2, was not overweight and until Alzheimer’s changed her life, was fit and healthy. I have always been aware that because my Mothers Mum, my maternal grandmother also had Diabetes, it was not unlikely that I would also develop it at some stage. I have always prepared healthy food but admit to maybe enjoying my food too much!
I have also suffered from high BP throughout my adult life, another legacy from Mother, plus Hyper Cholesterolemia, same source, which means that without help, my body does not deal with cholesterol efficiently and so it lays stored, I have been taking statins for some years now and generally have no ill effects, I also take Atenolol and Ace Inhibitors for an erratic BP. Three years ago, a routine blood test showed elevated levels of sugar and so I took a Glucose Intolerance test, the results showing Pre Diabetes. I was given very little advice, just handed a booklet to read, no tea and sympathy! Because at that time, I didn’t know any better, I followed the advice in the booklet, eat plenty of starchy carbs, which I did and soon noticed the weight gain!My family has a history of glaucoma and I have an annual eye check to ensure my eye pressure hasn’t increased. My job involves working with children with a visual impairment and I am well aware of how precious sight is. Interestingly my eye pressure had risen the year before diagnosis, but after 3 months low carbing it had dropped and earlier this month when I saw my optician he couldn’t believe how much further it had gone down. I told him that I was convinced that it had gone up due to high blood sugars and that it was now much improved due to good bs control, which he thoroughly agreed with, another bonus.
Who knows what is around the corner, but all I can say is that at the moment life is good, I am healthier than I have been in years and have made some wonderful friends who I am convinced have helped to save my life.”
I spoke to my Doctor who said not to worry, carry on doing what I was doing, so carry on I did! We then moved house and had to change Doctors and shortly afterwards, my new Doctor ordered blood tests to check on my liver function due to the statins, the results showed a high blood sugar and so the test was repeated two weeks later, the BG was even higher this time and an HbA1c showed 8.8, definitely Diabetes! I was devastated, I felt betrayed and angry and from that moment on, I decided to take charge of my own disease and destiny, embarking on a read, read and more read programme, it soon made perfect sense that the carbs were the culprit! My newly appointed Diabetes nurse was aghast at my new regime of low carbing, “On your own head be it” were her words! Pretty soon, she had to eat her words as the BG began to fall without the help of medication and although I wasn’t grossly overweight, my body became toned and healthy at a near perfect 9 stones. The HbA1c result after 8 months was 5.7 and at this juncture, the nurse no longer had an argument, indeed she began to ask me about my regime, taking notes whilst I sang the praises of low carbing, what sweet irony!! It’s no use being bitter, I try to be resolute and embrace my new way of life even though there are the odd times I come close to falling off the wagon, but so far I am clinging on for dear life!
Fergus2000:
“I have had type 1 diabetes for 27 years. For the first 20 of those I had gradually worsening health – increasing blood glucose, insulin use, hypoglycemia attacks and weight. I followed an approved diet based around starchy carbohydrates and low in fat. In 2000 I began trying to reverse my decline by restricting carbohydrates in my diet and replacing them with more meat, fish, vegetables, eggs, dairy foods and nuts, although I received no encouragement from my doctors in using this approach. The results have been remarkable2000: HbA1c 7.6%, BMI 29, HDL 1.7, LDL 2.4, triglyceride 0.7, daily insulin use ~80 units2008: HbA1c 4.7%, BMI 22, HDL 3.1, LDL 1.8, triglyceride 0.5, daily insulin use ~ 20 unitsI have always tried to look after myself, staying physically active and working hard. I have never consciously reduced my calorie intake. I believe all diabetics should be made aware of the potential benefits of such a diet before deciding how to deal with their condition.”

In December I wrote to my MP who forwarded the letter to Ministers in the UK Department of Health (6).

Here is a quote from the reply by Public Health Minister Jane Ellison:

“With regard to low carbohydrate diets, the Scientific Advisory Committee on Nutrition (SACN) published its report “Carbohydrates and Health” in July. In its report, SACN considered evidence from a wide range of prospective studies and randomised controlled trials that investigated the relation between consumption of carbohydrates and various health outcomes. The evidence considered by SACN for the report does not support the suggestion that consuming a diet low in carbohydrate and high in fat would reduce type 2 diabetes, but found that greater consumption of sugar-sweetened beverages is associated with increased risk.”

It is obvious this is a direct contradiction with the experience of those I have featured above. Essentially she is implying that all those who claim to have successfully treated T2D with LCHF are liars and charlatans. This Minister is incapable of making any kind of independent assessment for herself and is probably putty in the hands of her advisers who will never admit they have been wrong as long as they can get away with it.

If you are concerned and agree with me that the current policy is a disaster and causing many to suffer and die prematurely please present your views to Jeremy Hunt. Jane Ellison is no longer at the Department of Health.

His email is huntj@parliament.uk

He can be tweeted at

Jeremy Hunt @Jeremy_Hunt

If he is bombarded with letters, emails and Tweets then maybe the message will eventually get through.

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