Telling People They Don’t Exist – still

Motivational Poster - Support

Motivational Poster – Support (Photo credit: Raymond Brettschneider)

Inconvenient people challenge our mind-set and push our comfort zone.

This is not about shaming. It is about something subtly different – which is discounting other people’s experiences when they don’t match your own – even to the point of shunning.

Re-posted – Originally posted May 20, 2012.

One of my pet peeves is when people are, in effect, told that they don’t exist.

An example?  I get a migraine and flu-like symptoms if I eat even a tiny amount of gluten.  I don’t have celiac disease, I have gluten sensitivity. This has a major impact on the day-to-day living of my life and is something I can never afford to forget, ignore or down-play any time I am around food. Yet, to the vast majority of my own medical colleagues I don’t exist. They recognize the existence of a person occupying the space my body is in. However, what they see there is a person who isn’t me as I know myself to be. They see some deluded or self-deluded not very competent person who holds a questionable and likely false belief that places them in the ranks of the crackpots who think they are harmed by wheat, in the absence of laboratory proof. The recent recognition of gluten sensitivity as a medical condition (see this post) has not received wide-spread attention and is likely to be slow to be incorporated into routine medical practice.

People who have gained substantial health benefits from following a low-carb lifestyle are often treated in the same way. Many people report how frustrated they have felt when their doctors, their friends or work colleagues, or family members have discounted their stories and/or, even worse, discounted them as individuals for the decisions they have made and the “obviously false” conclusions they have come to.

But consider, does it ever happen the other way?

A few months ago I had an experience that has stayed in the back of my mind since.  On one of the blogs about low carb nutrition, I was reading an older post and the looong list of 50 or more comments under it. There was a lot of back-and-forth commenting among the contributors and with the author.  There was a good spirit of comradery evident. Everybody who raised a question, interesting idea or dilemma was responded to  — that is, everyone except one soul. One person posted a comment asking for insight or helpful comment on her situation – asking, that is, for help.  This soul was ignored as if she had leprosy. Her comment fell into a black pit.  The others resumed their conversations as if she didn’t exist.

Her social crime for which she received shunning – she dared to report that she was having little progress with weight loss despite a persistent and apparently well-applied very low carb/ketogenic diet. The post was old and the comments section had been closed, so I couldn’t respond to her myself.  I don’t think there was any attempt here to shame – just that her existence was inconvenient.

It is easy to love the idea that going low-carb is a sure-fire ticket to weight loss heaven.  This idea makes people smile and feel confident and enthusiastic.

The up-side  — the enthusiasm helps the knowledge spread.

The down-side  — since there is and never will be a sure-fire ticket to weight loss heaven, some individuals can feel unrecognized and discounted. Also, people who are broadly knowledgable about weight control issues recognize this as a false concept and this contributes to lack of respect for the message that low-carb nutrition is a valuable medical intervention (thus limiting the spread of the knowledge).

Low-carb nutrition and nutritional ketosis are very powerful and broadly beneficial tools that can help with weight loss in many ways. There are people who need other tools in addition or instead. Also, the benefits of low-carb nutrition can be swamped or over-ridden by other factors  – for example, certain medications or high stress states.

Many people do spectacularly well when adopting low-carb nutrition as a means to weight loss. Many others do very well or at least do well.  Messaging that focuses on dramatic weight loss, though, can mean that people miss the knowledge of how low-carb nutrition may benefit their health even in the absence of substantial weight loss.  It can mean that people get discouraged and miss out on the many other potential benefits.

“The reasonable man adapts himself to the world.  The unreasonable man persists in trying to adapt the world to himself.  Therefore, all progress depends on the unreasonable man.”  – George Bernard Shaw

If you have benefited from low-carb nutrition, or someone you love has, you might owe a debt to someone somewhere in the past who was not able to achieve success with weight loss with the use of the knowledge and advice they then had access to. The knowledge and understanding of low-carb nutrition is only available to us today because of the determined efforts of one individual after another, acting in response to this lack of success.

If you have a story of fabulous, easy success to tell  – please share it, share it!  Be proud, strut, jump up and down.

I would like to encourage the practice of avoiding suggesting that because it was easy  – or even just that it was possible – for you, that this means it would be or should be the same for all others.

That “unreasonable person” whose response isn’t the same as others’ is a person we can all learn from.  Their situation may be just about to spur some new understanding that will benefit us all some day.

Addendum:  I realize that I might have left that sounding as if there was only one incident that concerned me. Unfortunately, I have more than once read posted comments that flat out stated that since that person had achieved a great outcome with controlled carb intake, that this meant all was solved for everyone else if they would only just get with the program – again meaning that anyone still visibly overweight could be judged on the spot as someone who just wasn’t trying hard enough. I guess being addicted to feeling superior is something that doesn’t show at the waist band.

Addendum Oct 30/12 – Part of what was on my mind leading up to this post was Jimmy Moore’s blog post April 30th about the criticism he received. Now, that is a bit different situation, because it involved much more than discounting. But, it is a perfect illustration of the point I make toward the bottom of this post about all progress being due to the “unreasonable man” and that the people who have the most difficult time are the people who can show us another part of the path forward. This turned out to be oh-so-true in Jimmy Moore’s case – as we have watched unfold over the past 6 months. This post (May 20th) was several weeks before Jimmy’s famous first post about his nutritional ketosis experience – which was posted June 14th. So, at the time this was originally posted, Jimmy had not announced his new successful strategy  – so it seemed that he was still in a situation where his body was “unreasonably” not responding to the best strategies he knew of at the time – strategies that worked fabulously for many other people.

Anything “chronic skin”, give thought to gluten

The highly knowledgable and extremely experienced Dr. Rodney Ford, New Zealand’s “Doctor Gluten” has tweeted the following:

“If ANYONE has chronic skin disease look at this. I put heaps of people GF for their skin – they get better”

He has included a link to the following full text medical paper, full of explanation and with excellent pictures.  LINK

Remember, the tests used to diagnose celiac disease ARE NOT trustworthy when considering gluten-related tissue damage any place else than in the intestines.  The blood tests used are only testing for a type of tissue damage that happens to the intestines.  Much of the damage that happens to other types of tissue, such as the skin, can be caused by anti-bodies that are different and DO NOT show on the tests for celiac disease.  The term “celiac disease” refers only to the damage done to the intestines by the auto-immune attack triggered by the gliadin that is part of gluten.

English: HLA-DQ2.5 with a deamidated gliadin p...

English: HLA-DQ2.5 with a deamidated gliadin peptide in the binding pocket(yellow). Alpha-5 (orange) and Beta-2(Blue). Image rendered from 1S9V using MBT Protein Workshop. 3D-structure as part of: Kim, C.-Y., Quarsten, H., Bergseng, E., Khosla, C., Sollid, L.M. (2004) Structural basis for HLA-DQ2-mediated presentation of gluten epitopes in celiac disease Proc.Natl.Acad.Sci.USA 101: 4175-4179. (Photo credit: Wikipedia)

Note: we still often use the term “gluten” because so many people are used to using that word.  In reality, it has long been known that one specific part of gluten, a protein molecule called “gliadin”, is the part responsible for the auto-immune triggering.

If you think you don’t have to understand about gluten-related auto-immune disease because you follow a low-carb or grain-free lifestyle, think again.  With the immune system, an exposure of even 20 PPM can trigger damage and you cannot go by whether you feel symptoms of not. See “Why talk gluten when low-carb or grain-free?” and “Gluten awareness even for low carbers”.

See sidebar for link to Dr. Rodney Ford. Yes, he has unusually strenuous opinions, but consider his degree of frustration from the thousands of people he has treated in his long career who have had their health turned around by a gluten free diet – even in the absence of diagnosed celiac disease. Current lab tests and medical investigations very unfortunately cannot rule out gluten as a cause of ill health in any particular person.

Celiac disease limiting fuel for endurance – keto-adaptation would solve that!

Nutritional Ketosis as an Effective Strategy for Fueling Endurance

From New Zealand comes this report of an ultra-endurance athlete who had difficulty meeting fuel needs.
One solution for this would be the strategic use of nutritional ketosis.  To use this strategy, the athlete needs to be metabolically adapted to burning ketones for fuel.  This means being in nutritional ketosis for at least some weeks before the race day. The term that is used is “being in a state of keto-adaptation“. The advantage is that during the endurance exercise, the body can draw on the vast calories stored as fat (even in very slim people), while using less of the glycogen stores.

Case Study: Nutritional Strategies of a Cyclist with Celiac Disease During an Ultra-endurance Cycle Race.

Department of Human Nutrition, University of Otago, Dunedin, New Zealand.

Abstract

Food intolerance is becoming increasingly prevalent and increasing numbers of athletes participating in sporting events have celiac disease. This poses challenges as dietary recommendations for exercise are largely based on gluten containing carbohydrate-rich foods. The K4 cycle race covers 384 km around the Coromandel Peninsula, New Zealand. Lack of sleep, darkness and temperature variations pose a number of nutritional challenges. Limited food choices present those with celiac disease with even greater challenges. This case study describes the intakes of one such athlete during training and competing in the K4. Nutritional intakes were obtained during training using weighed food records and during the race via dietary recall and the weighing of foods pre- and post- race. As simple substitution of gluten containing foods for gluten-free foods leads to increased energy intake, alternatives need to be considered. During the race, insufficient energy was consumed to meet the nutritional guidelines for endurance performance. This was probably due to the nature of the course, racing conditions, the consistency of gluten-free food, and towards the end of the race, sensory specific satiety.  PMID: 22645170

To go to the font of the scientific knowledge on this, the book to read about the use of nutritional ketosis as a strategy for athletic performance is The Art and Science of Low Carbohydrate Performance by Jeff S. Volek, PhD, RD and Stephen D. Phinney, MD, PhD.  The price is more than reasonable ($8.95 on amazon and no I have absolutely no commercial ties or links).

A gluten-free low-carb bar in a pinch

Aside

On my recent trip to Denver for the obesity conference, I was so very glad to have found a gluten-free low-carb snack bar that I can use in a pinch.

I keep pretty much to real foods and eat quite simply.  Personally, I don’t fill my life with low-carb baking or with a lot of artificial sweeteners or sugar alcohols as sweeteners.  (For some people, though, this can be an important part of their long-term strategy that works for them.)

When travelling while eating gluten-free and low-carb, things can get difficult even when all goes according to plan.  I was glad that I planned ahead for this and had ordered from the US a box of snack bars and packed some for the trip.

I have absolutely no ties to any companies, so I’ll go ahead and mention the name Quest Bars, which I learned of through listening to Jimmy Moore’s LLVLC podcasts.  Having some of these with me really came in handy and saved me from having to go hungry on more than one occasion.

These bars are not sold in Canada.  You can, however, order them from the US for personal use (not to bring them in and sell them) as long as you stick to an amount that a Custom’s Agent would consider reasonable for personal use for a couple of months.  I ordered them from a major on-line supplement retailer that I have ordered from many times in the past 5 years or more.

To me, this is something I would only turn to for uncommon situations, such as a long flight.  If I started to think that I “needed” to have one every week or every few days, I would start to wonder about myself and to understand that I was just making up excuses.  Having the option of a gluten-free low-carb snack bar is great to know about, but if they start to call your name from the cupboard, perhaps they aren’t for you.

Gluten awareness even for low-carbers

There has been a fair amount of interest in my article on the need for gluten awareness even in the world of low-carb nutrition or grain-free eating, such as a Paleo lifestyle.

The topic is much larger than can be contained in any one blog post.  I tried to explain my thoughts a bit more in the comments section under the article, including:

With the immune system, the dose causing impact is orders of magnitude less than for the blood-sugar control system.

With the immune-system, the price to pay for small intakes is out of all proportion.

The Canadian Celiac Association is one place to look for info, such as this article on the new food labelling laws coming into effect in Canada in August.

Canada is in a transition period between the old labelling regulations and new regulations that take effect on August 4, 2012. By that date, labels for all food products sold in Canada will have to carry clear identification of the priority allergens, gluten, and added sulphites at a level greater than 10 ppm.

In Canada, gluten means “any gluten protein or modified protein, including any protein fraction derived from the grains of the following cereals: barley, oats, rye, triticale, wheat, kamut or spelt”. The definition also applies to the grains of hybridized strains of the cereals listed above.

And this article on cross-contamination:

People who need to eat gluten free need to check both the ingredients in food and any cross-contamination with gluten-containing ingredients that might happen when the food is manufactured, packaged and prepared for eating.

When you think about avoiding cross-contamination, you need to realize that crumbs matter. Look around your kitchen to see where there are crumbs – on the counter top, in the microwave, on the cutting board or in the corners of your metal baking dishes? Anywhere you see crumbs is a potential place for cross-contamination.

The Celiac Disease Foundation at celiac.org has an article on gluten in medications, along with extensive other info.

Celiac.com offers a mind-boggling list to keep in mind when reading food labels Unsafe Gluten-Free Food List (Unsafe Ingredients), along with extensive other info.

You might enjoy a “Wheat is Murder, Go Paleo” t-shirt from Tom Naughton’s site Fat Head.

I know, I know. Just eat non-processed real foods and you don’t have to worry about labels.  Yeah, that’s what I do.  But life ain’t perfect and neither are people and the penalty for small “sins” should not be so large.

When the 8 percent of us who need to avoid even tiny intakes of gluten (this is a rough estimate, true incidence not known and likely rising) are aware, knowledgable and active, life will get easier as the world adapts to our presence.

Why talk gluten when low-carb or grain-free?

Even with low-carb or grain-free eating, avoiding gluten still takes knowledge, awareness and vigilance.  The problem is common and the down-side is serious.

Answer:

  • because 1% plus 7% of the population equals a whole lot of people (8 of 100 people).
  • because gluten hides unsuspected in low-carb foods (e.g. most sausages).
  • because when eating out, travelling or eating at friend’s homes, people may make-do by removing croutons, removing the bun, removing the breaded coating, etc.
  • because people may sometimes make the choice to, say, have a tiny pinch of their daughter’s wedding cake or other special meaningful food.
  • because even these small exposures could cause strong symptoms. On top of that, this can be very confusing. Confusion and doubt can bring their own harm if they discourage someone from maintaining the low-carb lifestyle that was benefiting them.
  • because the consequences can be more than “just” the unpleasant hours or days of the obvious symptoms.  Unlike with other food reactions, these responses to gluten are not an allergy.  Gluten sensitivity is an autoimmune disease and celiac disease is just one version of this.  It is never good to poke-at or prod an auto-immune response, which is the body attacking itself.  There can be more health consequences on the line than you think.

When people first switch to a low-carb diet, if they are following the advice of the most knowledgable and experienced clinicians*, they will be having no grains.  Having no grains means they will not be having any gluten.  For some people, part of the improvements in health that they achieve will be due to removal of gluten from the diet.  However, for the reasons above, they may be intermittently exposed without realizing just what is happening to them.  As their health improves, they may come to a point where they are slowly intentionally expanding their diet choices to include small servings of gluten grains – for example, using a rye cracker to build a sandwich on.       (* for example Dr. Atkins, Jackie Eberstein, Dr. Eric Westman)

Because gluten sensitivity is an autoimmune disease, the true cost of even small exposures can be hidden and unrecognized.  Because the opportunity for un-intended intake of gluten is ubiquitous in our society, exposures that keep the immune system provoked are very likely unless the person has been diagnosed and is aware of what they need to be on the look-out for.

Consider:
Rev Neurol. 2011 Sep 1;53(5):287-300.

[Neurological disorders associated with gluten sensitivity].

[Article in Spanish]
Hernandez-Lahoz C, Mauri-Capdevila G, Vega-Villar J, Rodrigo L.

Source: Hospital Universitario Central de Asturias, 33006 Oviedo, Espana. carloshlahoz@gmail.com

Abstract

Gluten sensitivity is a systemic autoimmune disease that occurs in genetically susceptible individuals on ingesting gluten. It can appear at any age, then becoming a permanent condition. It is more frequent in women, as happens with other autoimmune diseases. Celiac disease is the intestinal form and the most important manifestation among a set of gluten-induced autoimmune pathologies that affect different systems. Neurological manifestations of gluten sensitivity, with or without enteropathy, are also frequent, their pathogenesis including an immunological attack on the central and peripheral nervous tissue accompanied by neurodegenerative changes. The clinical manifestations are varied, but the most common syndromes are cerebellar ataxia and peripheral neuropathy. Finally, gluten sensitivity is associated to a varying degree, with other complex diseases and could influence their evolution. The early detection of cases of gluten sensitivity with neurological manifestations and subsequent treatment with the gluten-free diet could provide remarkable benefits to the patients.

PMID: 21796607

Consider visiting the website of one of the most experienced clinicians, Dr. Rodney Ford (aka Dr. Gluten). His recently updated book Gluten Brain (http://t.co/yTonFF5t)  offers the provocative hypothesis that the principal damage involved in the gluten syndrome is to the brain and nerves.  (Note: at only $9.99 for the ebook the price is right, but myself I was not able to make the Kindle version I downloaded open in my Kindle app, so I settled for the PDF download (all versions are included in the one price) — the read was worth the inconvenience).

Consider visiting The University of Maryland Center for Celiac Research, where Dr. Fasano is one of the world’s top experts.

Addendum: Thank-you for all the interest in this article.  The subject is much too much to properly address in just a blog post.  If you are interested in more, please see my comment below and click on the Topic “Gluten and Wheat” in the side bar for my other posts, including two new ones today, May 26th.  There are foodie blogs that offer gluten-free low-carb recipes and suggestions.
Short link for this post http://wp.me/p2jTRh-6O

Telling People They Don’t Exist

One of my pet peeves is when people are, in effect, told that they don’t exist.

An example?  I get a migraine and flu-like symptoms if I eat even a tiny amount of gluten.  I don’t have celiac disease, I have gluten sensitivity. This has a major impact on the day-to-day living of my life and is something I can never afford to forget, ignore or down-play any time I am around food. Yet, to the vast majority of my own medical colleagues I don’t exist. They recognize the existence of a person occupying the space my body is in. However, what they see there is a person who isn’t me as I know myself to be. They see some deluded or self-deluded not very competent person who holds a questionable and likely false belief that places them in the ranks of the crackpots who think they are harmed by wheat, in the absence of laboratory proof. The recent recognition of gluten sensitivity as a medical condition (see this post) has not received wide-spread attention and is likely to be slow to be incorporated into routine medical practice.

People who have gained substantial health benefits from following a low-carb lifestyle are often treated in the same way. Many people report how frustrated they have felt when their doctors, their friends or work colleagues, or family members have discounted their stories and/or, even worse, discounted them as individuals for the decisions they have made and the “obviously false” conclusions they have come to.

But consider, does it ever happen the other way?

A few months ago I had an experience that has stayed in the back of my mind since.  On one of the blogs about low carb nutrition, I was reading an older post and the looong list of 50 or more comments under it. There was a lot of back-and-forth commenting among the contributors and with the author.  There was a good spirit of comradery evident. Everybody who raised a question, interesting idea or dilemma was responded to  — that is, everyone except one soul. One person posted a comment asking for insight or helpful comment on her situation – asking, that is, for help.  This soul was ignored as if she had leprosy. Her comment fell into a black pit.  The others resumed their conversations as if she didn’t exist.

Her social crime for which she received shunning – she dared to report that she was having little progress with weight loss despite a persistent and apparently well-applied very low carb/ketogenic diet. The post was old and the comments section had been closed, so I couldn’t respond to her myself.

It is easy to love the idea that going low-carb is a sure-fire ticket to weight loss heaven.  This idea makes people smile and feel confident and enthusiastic.

The up-side  — the enthusiasm helps the knowledge spread.

The down-side  — since there is and never will be a sure-fire ticket to weight loss heaven, some individuals can feel unrecognized and discounted. Also, people who are broadly knowledgable about weight control issues recognize this as a false concept and this contributes to lack of respect for the message that low-carb nutrition is a valuable medical intervention (thus limiting the spread of the knowledge).

Low-carb nutrition and nutritional ketosis are very powerful and broadly beneficial tools that can help with weight loss in many ways. There are people who need other tools in addition or instead. Also, the benefits of low-carb nutrition can be swamped or over-ridden by other factors  – for example, certain medications or high stress states.

Many people do spectacularly well when adopting low-carb nutrition as a means to weight loss. Many others do very well or at least do well.  Messaging that focuses on dramatic weight loss, though, can mean that people miss the knowledge of how low-carb nutrition may benefit their health even in the absence of substantial weight loss.  It can mean that people get discouraged and miss out on the many other potential benefits.

“The reasonable man adapts himself to the world.  The unreasonable man persists in trying to adapt the world to himself.  Therefore, all progress depends on the unreasonable man.”  – George Bernard Shaw

If you have benefited from low-carb nutrition, or someone you love has, you might owe a debt to someone somewhere in the past who was not able to achieve success with weight loss with the use of the knowledge and advice they then had access to. The knowledge and understanding of low-carb nutrition is only available to us today because of the determined efforts of one individual after another, acting in response to this lack of success.

If you have a story of fabulous, easy success to tell  – please share it, share it!  Be proud, strut, jump up and down.

I would like to encourage the practice of avoiding suggesting that because it was easy  – or even just that it was possible – for you, that this means it would be or should be the same for all others.

That “unreasonable person” whose response isn’t the same as others’ is a person we can all learn from.  Their situation may be just about to spur some new understanding that will benefit us all some day.

Addendum:  I realize that I might have left that sounding as if there was only one incident that concerned me. Unfortunately, I have more than once read posted comments that flat out stated that since that person had achieved a great outcome with controlled carb intake, that this meant all was solved for everyone else if they would only just get with the program – again meaning that anyone still visibly overweight could be judged on the spot as someone who just wasn’t trying hard enough. I guess being addicted to feeling superior is something that doesn’t show at the waist band.

University of Maryland School of Medicine Researchers Identify Key Pathogenic Differences Between Celiac Disease & Gluten Sensitivity

University of Maryland School of Medicine Researchers Identify Key Pathogenic Differences Between Celiac Disease & Gluten Sensitivity.

If you have suspected that you have symptoms from consuming wheat or gluten, but have been recently tested* for celiac disease and the tests were negative**, you might have gluten sensitivity. This article has important information for you.

If you have long been certain that gluten is a problem for you, but you have recently tested negative for celiac disease and your doctor and/or your family is giving you a hard time, this is a great article to print out and give to them.  Let them argue with some of the top experts in the world.

* Celiac disease can develop at any age, not having it at some point in the past does not answer the question now.  Extensive research has repeatedly shown that 1% of the population have celiac disease.

** In medical testing, ‘negative’ does not mean negative as in bad news, it means negative as in the word no.