What's With People in Smithers Avoiding Wheat and Gluten?

unknown-1People in Smithers are very, very smart. Okay, that's the short answer to the question.

Actually it isn't just people who live in Smithers who are avoiding wheat and/or gluten and/or grain en masse.  It's pretty much global at this point.

The impetus of  this blog came about after I attended a medical conference this past weekend in Smithers.  The lectures were given by an assortment of professionals:  specialists, GPs and a pharmacist.

The first lecture was given by a general surgeon who travels to rural Smithers to administer necessary care.  He made a query and comment regarding the dumbfounding number of people in this town who have removed wheat from their diet.  "What's with that?", he rhetorically asked.  His tone was mildly derogatory, and his comments were followed by sarcastic snickers from the GPs in the audience.  These were the kind of snickers that clearly spelled out the phrase, "This is nonsense!"  (short of a definitively diagnosed celiac disease or an IgE-mediated wheat or gluten allergy).

I felt my face go red.  I don't easily blush from embarrassment, but I swear I was crimson at that point.  I knew that I had been a major contributor to this wheat-free, gluten-free and grain-free phenomenon in this town for the past 19 years.

The snickering was not unlike the, "This-is-nonsense!-snickering" sounds that I hear when I attend a naturopathic conference, and a speaker is making jokes about the reductionistic and suppressive approach of allopathic (conventional) medicine.

In trying to understand the flavour of this type of snickering, I imagined that I too would be guilty of engaging in "This-is-nonsense!-snickering" behaviour if I were to attend a conference about inflammatory bowel disease and sit through a lecture discussing the plausible efficacy of fecal transplants.

The truth is, that none of these topics are nonsense;  shoving someone else's poop up the butt could be helpful for some;  suppressing symptoms and reducing a patient to a body part in an acute crisis, is lifesaving;  and eliminating wheat or gluten or grain in many people without frank disease is unequivocally and beneficially life altering for many.

I now equate snickering to, "I haven't a clue".

And wouldn't you know it?  Coincidentally, the topic on the following day was a lecture about celiac disease and non-celiac gluten sensitivity given by a gastroenterologist.

I will make a confession here before I go on.

Until this past weekend, I used to have a prejudice against gastroenterologists.  Previously, I had this stereotypical image of a cranky, old, bloated (both in the head and gut) specialist, with a waiting room full of people who would be better served by going to see a naturopathic doctor.  This exaggerated stereotypical specialist would tell every patient he saw, "your disease has nothing to do with what you're eating".  Meanwhile, any patient could have changed her diet dramatically and put her own disease into complete remission, yet this bloated doc would still be condescendingly using verbal diarrhea to basically repeat his same one-liner to his patient, "your disease has nothing to do with what you're eating".

This past weekend, my long-held stereotype of gastroenterologists was pleasantly and completely shattered.

First off, the speaker was stunningly beautiful, slim and young.  She was well-spoken, and her manner was very sophisticated, absent any type of arrogance.  She talked about celiac disease  and the risks of not obtaining a definitive diagnosis for this condition.  She talked about latent and silent celiac  patients who have not yet displayed abnormal biomarkers.  She talked about the many patients who did not have celiac disease but are gluten sensitive instead and are known as non-celiac gluten sensitive (NCGS).  And she also explained that the reaction to gluten in NCGS patients might not be because of an intolerance to gluten, but rather, an intolerance to short chain carbohydrates as seen in a high FODMAP diet.

When she was asked about people where celiac disease was ruled out, yet experienced dramatic improvements in their health with the removal of wheat or gluten or grain, her response to these patients was, "Great.  Keep going".

My view of gut specialists did a 180 degree turn right then and there.  She was a specialist who knew her stuff and beyond.

The take home messages of her lecture for me, were these following points:

1)  a small bowel biopsy should always follow an elevated tissue transglutaminase IgA test to obtain a definitive diagnosis for celiac disease

2)  if celiac disease is strongly suspected, a serum IgA should also be done along with a tissue transglutaminase test, since low serum levels of IgA can render the latter test negative

3)  a patient must be eating gluten for 6 - 8 weeks prior to blood work (non-genetic testing), since avoidance of this food can render the test negative

4)  gluten does not need to be eliminated from the diet for genetic testing, and a positive result does not necessarily definitively conclude a diagnosis of celiac disease, yet a negative result can rule it out

With the incidence of celiac disease being 1 in 100, it is crucial to determine which people actually have this disease.  The importance being, that many complications can develop if these patients do not adhere to a very strict gluten-free diet;  bowel cancer and lymphoma being the most dangerous sequelae.

Certainly, all people with gastrointestinal symptoms who are experiencing weight loss, anemia and altered bowel function should at the very least, always be tested for celiac disease.

It's everyone else in the gray zone where the challenge remains.  This gray zone consists of silent/latent celiac patients who have the genetic predisposition to go on to develop the full-blown disease and whose biomarkers are negative, all the way to people with NCGS.

There are no easy answers.  Many people take themselves off of gluten and wheat because of the popularity of books like the Wheat Belly and Grain Brain, and notice incredible changes in their health, well-being and quality of life.

I have recommended the elimination of wheat or gluten or grain to many patients who have not presented with a "clear celiac picture", but because they have displayed elevated IgE or IgG4 antibodies to these substances.  IgA antibodies to gliadin is another type of test that can help determine if one has NCSG.  Electrodermal testing can also aid in trying to determine those with NCSG, and breath testing for SIBO may provide some clues as well.

This all begets the question, should everyone be screened for celiac disease?  My answers is both yes and no.  Screening everyone for this disease would place an unreasonably high financial burden on our Canadian health care system, and the allocation of these funds could be best served elsewhere, IMHO.  So no, for that reason.

However, I do believe that everyone who chooses to eliminate gluten or grains from their diet without a definitive diagnosis of celiac disease should take on the responsibility of financially paying for their own testing.  A lab in Canada called Rocky Mountain Analytical will do this for those who aren't squeamish about poking their own fingers.  For the adventurous who choose to do this on their own, you MUST be eating gluten for 6 - 8 weeks prior to testing.  If your test shows positive for tissue transglutaminase A, do not remove gluten from your diet, but head to your medical doctor for further testing and a definitive diagnosis.

Personally, I'm waiting for Cyrex labs to come to Canada (which rumour has it will be coming in a few months), for the most comprehensive gluten test available, and is recommended by Dr. David Perlmutter MD.

Some people wonder, if removing gluten and grains from their diet makes them feel so damn good, why bother testing in the first place, and especially with something as invasive as a small bowel biopsy.

The answer lies in the compliance and strictness of gluten removal.  Not being strict with the diet if you are celiac, over the long haul, can be fatal.  Not being strict with the diet if you are NCGS, is a big unknown regarding future complications and the development of lethal conditions.  However, Dr. Perlmutter in Grain Brain, uses scientific and epidemiological studies to counter this last statement, and believes that the damaging effects of gluten and grains are much more known than we are led to believe for the non-celiac population.

I will share with you, 3 extreme examples of celiac disease to illustrate my point.

I saw a woman in her mid-50s with typical general complaints:  fatigue, mild dyspepsia and mild depression.  All of her blood work was normal, except for a low ferritin that was still within normal range.  She did not present with frank celiac symptoms and understandably, her MD did not do a tissue transglutaminase test on her at that time.  I also did not consider doing one.  After I saw her, I did an IgE and IgG4 food allergy/intolerance test of 90 foods and found her to be positive to many substances, one being gluten.  Her health dramatically improved with the elimination of the foods she tested positive for.  She was compliant with this dietary regime for less than a year.  Many years had past and she resumed her pre-food-testing diet.  Her symptoms returned and she told her MD that she felt better off of gluten and dairy products.  Based on that information, this MD proceeded to do a tissue transglutaminase test, which was found to be positive.  This abnormal finding was followed up by a conclusive positive small bowel biopsy.

This is a case where an earlier definitive diagnosis may have assisted in advising this patient of a strict no-cheating policy when it came to gluten, thus helping her avoid a few extra years of unnecessary discomfort and illness.  However, as seen in the next case, compliance is an issue even in those who have been definitively diagnosed with celiac.

A woman in her 70s was definitively diagnosed with celiac disease in her youth, but for whatever reason, chose not to be compliant with a gluten-free diet.  She died of lymphoma, very likely related to poor dietary regulation of her celiac disease.

So what is more important?  A definitive diagnosis?  Or compliance?  Both are equally important.

Then there is the extreme case that neurologist, Dr. Perlmutter describes in his book, Grain Brain.  A patient was misdiagnosed with ALS and ended up finding out that he was really only a celiac patient.  Can you imagine going from being told that you have one of the most horrible diseases on the planet, and that you'll die in 2 - 5 years where you won't be able to move anything but your eyes, and you won't be able to breathe without a machine - going from THAT, to just having to remove gluten from your diet?!?!?  OMG.  If that was me, I'd be kissing the ground and thanking any type of deity I believed in (God, Allah, Buddha, Krishna, Darwin, Science - any God), and thanking this deity that the only thing I had to learn was how to make delicious gluten-free meals and which restaurants to avoid, instead of having to decide in a few years whether or not I wanted a breathing machine and 24-hour nursing care to keep me alive.

NCSG people also have experienced neurological deficits as seen in this study.  In practice, I have also seen many types of neurological symptoms, even those that looked like multiple sclerosis, disappear with the elimination of gluten in NCSG patients.

My family and I have been gluten-free for 20 years now as I have previously mentioned in this blog.  After listening to the gastroenterologist give her talk, I asked myself if I was best serving all of the patients I see, as well as my own family.

With my husband, he is the easy one.  There would be no reason on earth to do a celiac test on him because he is more strict about being gluten-free than any celiac patient I have ever seen, and he will continue to do this for the rest of his life because he feels much better for having done so.

With myself, I have little reason to believe that I have celiac disease and I eat gluten very rarely in the form of filo pastry once per year.  However, I enjoy how I feel when I avoid both gluten and grains from my diet.  With my older daughter, her experience is similar to my own.  I will likely do genetic testing on the both of us, and only if the results are positive, will I pursue further testing for celiac disease.

My younger daughter is a different story.  She was extremely ill for the first 2 years of her life until I did an IgE and IgG4 antibody food test on her and removed the offending foods, one being gluten.  She defied her pediatrician's predictions of growing up to be a child with life-long respiratory problems, and continues to experience remarkable health to this day.

When she was 6 years old, her new pediatrician in Smithers did extremely comprehensive testing on her, and one of the tests he did was a tissue transglutaminase for celiac disease.  The test was negative, but she had been gluten-free for 4 years prior to the test.  Therefore, it was not a valid test for her at that time.

Now, as a young adult, she still is pretty much gluten-free, but has gluten foods about once per week.  She is the exact type of person I would want to definitively know whether she has celiac disease or not.  Why?  Because if she is not strict and she has celiac disease, she could be open to a whole host of potential problems like osteoporosis, cancer, neuropathy, depression, anxiety, reproductive problems and birth defects.

When Cyrex Labs comes to Canada, I will recommend that my youngest eat gluten consistently for 6 - 8 weeks, and then do these tests.  Yes, it will likely be a very crappy 6 - 8 weeks for her.  Hopefully her health won't plummet too terribly.  After all, it's been 18 years, and we have never challenged her system with gluten for more than a few days at a time here and there, from the age of 2 on.

To wrap up this entire discussion, there is no one size that fits all in diagnosis, diet or disease testing.

There are many people who remain healthy and vibrant while eating wheat, gluten and grains and do not have NCGS.

However, many other people in Smithers and around the globe have figured out that one size does not fit all, and have used their own personal laboratories; - their own bodies - to obtain valuable, observatory data from.  This is what I call smart medicine.  The caveat here, is please do this wisely.  You do not want to end up removing gluten from your diet in a half-ass non-strict way if you are sitting with a potentially life-threatening disease.