Wednesday, April 6, 2016

Complications are complicated

There is an ongoing discussion in the diabetes community about complications, and I think our conversation needs to change dramatically.

Last night I popped in to the #dcde chat about complications, and I was utterly shocked at the way the conversation was being steered.

I feel like this blog post may bring on a firestorm, but the conversation was hijacked by a follower of Dr. Bernstein. I will be the first to say that I have nothing against anyone's personal choices in how they manage their diabetes, or in how they choose to eat. I think if you choose to follow Dr. Bernstein's advice, all power to you. However, there is always a line that can be crossed when you are discussing your personal treatment choices. When that line is crossed in a conversation about complications, I want to spit fire.

The discussion section I caught was in regards to neuropathy. I caught a Dr. Bernstein (self proclaimed in her twitter profile) groupie claim that people who follow the low-carb diet have successfully reversed neuropathy. I thought this was 1) outrageous and 2) just another way for people who feel they know better than anyone else can shame people living with complications.

I can not stand the smug air of superiority when people claim that one exact lifestyle choice is a blanket cure for anything, so naturally I questioned someone using twitter as @thediabetesdoc. He claims to be a doctor, so I asked for clarification of this claim. Naturally, no answer was given. I do believe he is a doctor, but I wish that he would come down solid on the clarification of language.



So, being the person I am, I sleuthed a bit on the Internet for actual scientific articles about reversal of neuropathy.

Here is a link to scholarly articles about "reversing" diabetic neuropathy.

There was no article that said that you can totally reverse neuropathy. Everything I found the symptoms are alleviated with tighter control, and sometimes some people choose a low carb lifestyle in combination with their insulin regimen to achieve these goals. However, there's always a caveat, it's never that simple. You can't just put down the carbs and magically have healed nerves. The same way you can't just put down the sugar and reverse your diabetes.

These conversations revolving around complications need to be more delicate. I fear that this mother may feel an epic downfall if her child, who she has put on the Dr. Bernstein diet, maybe one day will have neuropathy despite best efforts. Unfortunately, this disease is a beast. It happens, I wish it wouldn't. I will fight for it to not be that way for anyone. We need to have a broader conversation about this. We need to be able to comfortably open up about our experiences and not fear a member of our very own community tries to one up us with information that is available to everyone.

I can't tolerate it any more.


5 comments:

  1. I agree that people need to be respectful. I hold a B.S. Biochemistry and a Ph.D. In Molecular and Cellular biology. I have type 1 diabetes and I follow a low carb diet (modified/combo of Bernstein plan/paleo), eating about twice as many carbs as suggested on the strict Bernstein plan. It works for me, and I wish I had been eating this way much longer, but I am not one to push my choices on others :) I am curious why it is so important to you to distinguish between vast improvement in symptoms and complete reversal of symptoms? Conducting my own (very brief) literature search, I did come across several studies in animals and humans showing vast improvements in complications such as neuropathy and nephropathy (some of the improvements were achived with treatment, some with diet and improved "metabolic control"). As you understand, it would be incredibly time-consuming if bot impossible to read ALL the literature, but I digress... I am actually in low carb groups on facebook and I joked with my husband at first about how I "joined a cult". I must say I have learned a lot that has helped me tremendously in the physical (and by extension) mental aspects of diabetes management. At the same time, I have also seen insensitive and rude comments as well as a fair share of blanketed statements, along with graphs and memes that are misrepresentative if actual science (I am over there correcting them ;) I am saddenned that this divide exists in the doc and that there are low carb followers who are rude and pushy and mean and give the whole group a bad name. Having said that, I fail to understand why someone saying on Twitter that they know individuals for whom a low carb diet has reduced or reversed complications is offensive. Personally, I think the comment "some people join cults to guilt others. Some don't ;)" is pretty blanketed and may be interpreted as rude. The vast majority of people I know who follow low carb are kind, sensitive, and only want what is best for them and/or their kids/loved ones. I also cannot stand a "smug air of superiority". When I found the doc 3.5 years ago I was so thrilled to become part of such a warm and inclusive community. It breaks my heart when people tear each other apart.

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    1. The statements were made to a patient who is currently dealing with neuropathy. As if that patient didn't know any better to eat low carb and everything will be fixed. Complications can be devastating to people and to suggest something as simple as a diet change can fix that with out knowing someone's personal genetic make up is where the smug air of superiority comes from.

      And there are people who specifically follow that diet and lifestyle that are cult-like. You said it yourself, there are people who shame others for not following their lifestyle, and these comments were exactly like that. I have left many, many conversations in this community without saying a word being said even though my personal lifestyle was being attacked.

      I know, for a fact, that there are plenty of NALT (not all like that) low carb die hards, but the person to speak to about being preachy and cult-like isn't me, it's the others. The others who make sweeping statements to patients like the one who felt attacked last night.

      I think it's important from the patient perspective to understand that eating low carb won't reverse the damage done to nerves. Alleviating symptoms is not the same as reversing an illness. Just like eating low carb and exercising doesn't reverse type two diabetes. Indicating the reversing of illness would be removing the burden of continuing protection for some people and could be hazardous to health. Not only that, when we are speaking about funding from governmental and research POVs it becomes increasingly difficult to obtain sufficient dollars for better research when there is a plethora of information out there that says jus..don't eat carbs and exercise. Its happening now in the T2 research world (and by extension the T1), and unfortunately the more people simplify a complex biological issue with genetic components, the less researchers can do their work to find a true biological cure or advancements for better protections. We all want the same thing, how I live isn't better and neither is anyone else's way.

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    2. Just to zoom out a bit, I want the language issue addressed (i.e. several of complication vs. diminished symptoms) because we have a much broader issue around language in patient communities. renza said it best here:

      https://diabetogenic.wordpress.com/2016/04/04/languagematters/

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  2. You definitely bring up a crucial point - genetic/ epigenetic variability. For this reason, along with a lack of studies on low carb diets (and other factors) we cannot actually conclude what the outcome would be. With type 2 diabetes, there are numerous studies showing that early stages of type 2 can be "reversed" or metabolically classified as being "in remission", but it does heavily depend on both genetics as well as the stage of disease progression... The research funding - what a horrible, horrible situation! I am heavily considering leaving academia and working for a private company due to the funding structure being the way it is. I do hope that in the near future there will more money to devote to an array of research - both on lifestyle/ diet, as well as (individualized!) treatments.

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  3. I referred your blog (and the responses) to the TUDiabetes blog site for the week of April 4, 2016.

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