Gluten Sensitivity — Part 3 — Stumbling Upon a Cure

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.    Below is a list of some pre­lim­i­nary resources if you want more infor­ma­tion.

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

ezlawless@hotmail.com

 


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About Ronald Lavine, D.C.

Dr. Lavine has more than thirty years' experience helping patients alleviate pain and restore health using diverse, scientifically-based manual therapy and therapeutic exercise and alignment methods.

His website, askdrlavine.com, provides more information about his approach.

Please contact him at drlavine@yourbodyofknowledge.com or at 212-400-9663.

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