I wasn’t planning to write a third article in my series on gluten sensitivity.

But after I published the first two parts, a reader alerted me to a letter she’d come across about one man’s experience with chronic pain and its relationship to gluten.

I was moved by his story and immediately wrote to him to ask permission to re-publish it.

In under an hour I had my permission.  And not only that, here’s what he said:

Hi Ron,

Please pass it on, post it to your blog, help get it in front of as many eyes as you can. My hope is that someone sees this and gives it a try. I am a chef and was very skeptical, in fact I wasn’t expecting anything at all. If I can help one person and prevent them from going through what I did that would be worth the pain I have suffered.I am available by phone or email to you or anyone so feel free to help spread the word.

Best,
Tony

Stumbling upon a cure

By Tony Lawless (As told to and written by my wife, Tina Oddleifson)

This past spring, my life changed dramatically when my wife happened  to read the article “The Boy with a Thorn in his Joints”  by Susannnah Meadows” in the February 3, 2013 edition of the NY Times Magazine.  The article described how her three year old son was diagnosed with a debilitating form of juvenile arthritis, and the journey that led to his eventual cure.  Despite the best intentions of modern medicine, her son was cured not by the powerful drugs he was given, but by his mother’s decision to at first supplement his medical treatment and then rely on a treatment of dietary changes to cure her son – including the elimination of wheat and dairy products.

I was diagnosed with rheumatoid arthritis in 1979 when I was 19 years old. In the early stages there were days when I was in so much pain it took me almost two hours for my body to move enough for me to get out of bed.  One morning I told my mother I had had enough and sincerely wanted to die. We cried together, but with her love and determination she helped me get out of that bed and from that point forward I have never given up.

Over the past 33 years I have lived my life in the 3-7 range on the pain scale and at one very low point I again considered suicide.  In 2001 I electively had my leg amputated below the knee after an unsuccessful surgery to fuse my ankle bones left me in constant pain and forced me to wear a Bledsoe boot for five years while working 60-80 hours a week as a chef.   I have had my wrist bone surgically fused, my elbows are permanently damaged and no longer straiten, and my fingers are bent and deformed.  I have had several emergency room visits for cellulitis and other infections due to my use of immune suppressing drugs like Embrel and Humira, and I have been on Prednisone for a long period of time.  These drugs have links to cancer, liver damage and other serious and life-threatening side effects.  I have been prescribed addictive types of pain killers since the early onset and this past year was put on Morphine to deal with increasing pain and narcotic tolerance.

Despite all this I was also blessed with a good sense of humor, and a can do attitude.   My doctors told me I would be in a wheel chair by the age of 25, but my determination to keep my body moving led me to graduate in the top 10% of my class at the Culinary Institute of America , and I went on to have a successful career as a chef in an industry notorious for its long hours and demanding physical work.  I am physically active, own and operate a busy inn and restaurant in Maine, and am very involved in a program that provides adaptive sports programs for people with physical disabilities.

I am very grateful for the dedicated and well intentioned treatment I received over the years from my doctors, and have been able to live a much better life because of the drugs and surgeries I was given.

Alternative Treatment

I have tried several alternative forms of treatment over the years, including gold injections, bee stings, intravenous injections of DMSO, and meditation with crystals.  A person dealing with chronic pain over a long period of time will try anything.  So when my wife suggested a gluten free diet after reading the NY Times article, I thought “why not?”  Although I must admit that as a chef and restaurant owner, the increasing number of complex demands by customers from vegan, to gluten free and dairy free, plus a list of dozens of different food allergies that seems to grow on a daily basis, has been frustrating.  Many in the food industry want to say “get over it” to customers trying the latest diet fad.

Within the first two weeks of going gluten free I noticed a remarkable difference in my level of pain.  Within a month I was entirely pain free, and within two months I stopped my use of six drugs prescribed for advanced rheumatoid arthritis – these include Morphine, Humira, Prednisone, Celebrex, and Dilaudid, plus Pantoprazale (to deal with the side effects of the other drugs).

This experience has led me through a series of emotions ranging from stunned disbelief, to elation to anger, to fear this all may be some weird fluke and the pain will return.  Thirty three years of “toughing it out” suddenly stopped and left me emotionally spent, but determined to understand what happened.

So what is wrong with gluten?

While not in the main stream, some doctors feel that gluten is a major culprit in the symptoms found in almost 200 different physical problems, including inflammatory diseases like RA.  While a smaller percentage of the population has a condition known as Celiac’s disease, an allergy to wheat that can result in immediate and serious reaction when ingested, 6-10% of the population is thought to be “gluten intolerant” and is reacting in other ways from asthma and joint pain to mood and behavioral problems.

In 2009 research by the Mayo Clinic discovered that the incidents of Celiac disease have quadrupled since 1950, and that the cause is directly related to changes in the wheat we consume.  The modern version of wheat in the American diet is a “super- hybridized” wheat that has been artificially manipulated many times over since the 1950’s so that it can be easily grown, processed, and made more profitable. This modern version of wheat, contains excess amounts of gluten and is ubiquitous in our diet, particularly in processed foods from canned soups to salad dressings

As the NY Times article pointed out, it is largely accepted by the medical community that there is a strong relationship between our stomachs and our immune systems. It is also true that a condition known as increased intestinal permeability (leaky gut syndrome) does exist and some researchers feel it could play a role in the cause of arthritis and other ailments.   This syndrome is caused when the stomach becomes inflamed , causing the lining to weaken which allows proteins or bacteria to leak into surrounding tissue.  The body then goes on full offensive to rid itself of these invaders through inflammation – resulting in the symptoms seen in auto-immune diseases like RA.

Where am I now?

I have had two painful flair ups of arthritis since going gluten free six months ago which happened after I ingested a processed food snack, and after I ate food from an Asian restaurant that used soy sauce (which contains gluten).  Thankfully these painful episodes lasted less than two days.   What is clear to me is that my body was reacting to something I ate. Once I was again careful about my diet, the symptoms went away and have stayed away.

I have since heard dozens of similar accounts that tell me I am not alone.  Other people with RA and other diseases have been cured by a gluten free, organic diet that is also free of genetically modified organisms (GMO’s).  GMO’s have also been linked to inflammatory diseases and is a whole other topic for discussion.   Increasing numbers of researchers, doctors and environmental groups are acknowledging that something in our food is having far reaching impacts on our health at unprecedented rates, particularly in the US.

Why so little discussion of diet by the medical profession?

The Arthritis Foundation’s “open letter” to the Editor of the NY Times in response to the February article was disappointing at best. Instead of simply acknowledging that diet could be playing a more serious role in the cause of arthritis, and recognizing the importance of fully researching this connection, they accused the Times of presenting an unbalanced view point.   They said the author was being “simplistic and inaccurate” to suggest that diet could cure arthritis. They warned that the article may prevent parents from getting their children medical attention.

My experience has taught me that the medical community’s focus on the use of drugs to treat symptoms, rather than a holistic look at diet and other environmental factors, has resulted in a major disservice to patients like me.  While it may be difficult and unprofitable to isolate diet for scientific study, a more open minded approach to healthcare in our country is long overdue.

If my wife had not read the NY Times article, I would still have RA, be in pain, and taking drugs with serious side effects.  I am indebted to both Susannah Meadows and the NY Times Editors for this gift.  I regularly tell people my story with the hope it may help just one person avoid a life dominated by pain.  I read product labels religiously, and avoid anything that has gluten, has been highly processed and has ingredients I can’t pronounce, or has genetically modified ingredients. If you know of anyone dealing with chronic pain, please share my story and pass along my contact information.

—– Tony Lawless, Deer Isle, Maine, September 2013

ezlawless@hotmail.com