The Backstory: A Long And Winding Road

by | Jul 27, 2019

Share this:

With every idea, there is a backstory, and obviously this website, “Is It Truly Gluten Free?” is no exception.  Most people probably assume that a guy who builds a blog about gluten-free food is likely gluten-sensitive himself.  I’m not.  I don’t have celiac disease, nor do I have any sort of gluten sensitivity or allergy.  My wonderful wife of 22 years, however, does.  Together, we have traveled what seems like an extraordinarily long and winding road with regard to her health.  And that is where the backstory of “Is It Truly Gluten Free?” begins.

Acid Reflux?

Jill and I first met back in 1997.  Shortly afterward, we began dating, and I learned of the numerous health challenges she had experienced for quite a number of years.  She had been to multiple doctors who never really had any firm answers for her.  Generally speaking, her lab work always came back “normal”.  She had been diagnosed with GERD and Barrett’s Esophagus, and had been prescribed medications to help address those issues.  Although the medications seemed to help with some of the obvious acid reflux symptoms, she still had frequent bouts of abdominal pain.  Occasionally, this pain took the form of a severe attack, but she could never consistently correlate it with any particular food she had eaten.  She generally always experienced some degree of abdominal discomfort after eating.

Irritable Bowel Syndrome?

In late 1997, we married.  As time went on, her symptoms became more and more pronounced.  We continued to go to doctors, including a gastroenterologist who decided that she had Irritable Bowel Syndrome.  This doctor explained that IBS was an enigma.  Nobody knew what caused it, and nobody knew how to treat it, much less cure it.  In other words, it was something she simply had to learn to live with.

We struggled with this diagnosis.  For one thing, it was a diagnosis without hope.  Secondly, something just didn’t feel right about it.

This was our first introduction to a phenomenon that seems have become very common these days; where a doctor gives a diagnosis that amounts to nothing more than a re-stating of the symptoms.  Imagine going to your doctor and telling him or her, “Doctor, I get a lot of stomach aches.”  Then, after putting you through a gauntlet of tests (some of which are quite unpleasant), the doctor finally says, “None of the tests are conclusive. You must have Painful Stomach Syndrome”.  Now that sounds ludicrous, but if you think about it, the term “irritable bowel” basically means the same thing as “painful stomach”.  In our case, upon receiving this diagnosis, the only information we could glean from it was that Jill had an irritable bowel (or painful stomach, if you will).  Ummm…. thanks, but yeah… we already knew that.  Needless to say, we found this diagnosis to be somewhat less than helpful.

Continued Decline

We continued trying to find answers to Jill’s Painful Stomach Syndrome (we sort of refused to accept the IBS diagnosis).  Meanwhile, her health began to nosedive.  She described feeling like she had the flu all the time.  Dizziness and lightheadedness were frequent occurrences.  She had unrelenting fatigue, and general body aches.  Often, she described it as feeling like she’d been “run over by a Mack truck.”

During all this, she also began losing weight.  When I met her in 1997, she was 105 lbs, at 5 feet 7 inches tall.  As time went on, she dropped to around 100 lbs; then, eventually to 95; then finally to 90.  At one point, in 2016, during a particularly difficult phase, she hit 85 lbs.  That was a scary time for us.  Fortunately, she’s put on a little more weight since then, but it’s now been many years since she’s weighed 95 lbs or more.

An answer

One night in 2001 or 2002, We found ourselves in the ER during one of Jill’s more painful abdominal attacks.  A new doctor had recently moved to town (We live in a tiny town with a population of only about 4,500 people, so there are only a handful of doctors), and by happenstance, he was on call that night.  Not surprisingly, there was no firm explanation for why she had experienced this attack.  The best thing the doctor could come up with was gas.

However, we found we liked this new doctor, so Jill began seeing him as her primary care physician.  She once again went through all the standard tests, and he sent her to various specialists, none of whom had any answers except IBS.  In fact, it seemed as if some of these doctors just gave up once we told them she had been diagnosed with IBS.  It was almost as though they didn’t even want to bother looking deeper, and would rather just concur with the IBS diagnosis.

Then, in 2003, at one of her follow-up visits, her primary care doctor sat there, reviewing her medical history, trying to put the pieces together.  While doing so, he paused for moment, and then asked if she remembered ever being tested for celiac sprue.

What the heck is a Celiac Sprue???

Celiac sprue?  We had no idea what that was.  It sounded to me like something straight out of a Star Trek episode.  Fortunately, the condition also has a less Star Treky name: celiac disease.  The doctor ordered a blood test, in which whatever he was looking for came back highly elevated. He then told us that Jill very likely had Celiac spruce, but that it needed to be confirmed through an intestinal biopsy.

1 in 250,000?

The doctor described celiac disease as an extremely rare condition.  In fact, he gave us a photocopy of its description from one of his medical books.  It stated that celiac sprue affects one in 250,000 people.  Yes, that’s really what it said: 1 in 250,000!  That would be .000004% of the current US population, which translates to a grand total of 1,300 celiacs in the US, using 2018 population statistics!  Oh, and we shouldn’t forget our Canadian neighbors.  Believe it or not, this statistic would make a whopping 148 celiacs living in Canada!  All kidding aside, the Celiac Disease Foundation now estimates that 1 in 100 people have celiac disease.  It goes to show how misunderstood celiac disease was just 17 years ago.

Anyway, I digress. We were so grateful to finally have a doctor who cared enough to look beyond the obvious and dig a little deeper.  He sent Jill to a gastroenterologist for a biopsy to confirm the diagnosis.  The biopsy came back indicating villous atrophy in her small intestine.  We finally had an answer!  Believe it or not, we were incredibly excited!  Her condition was no longer without an explanation.  We now knew what it was, and not only that, we knew we could treat it simply by adhering to a gluten-free diet!  Little did we know at the time how life-changing, on so many levels, this diagnosis would be for our family.

The Gluten-Free Diet

We were, indeed, happy to have a legitimate diagnosis.  And we were even happier to know how to reverse the symptoms.  But in actuality, the gluten-free diet proved not so simple.

In 2003, virtually no mainstream food products were labeled gluten-free.  The best sources for actual, gluten-free-labeled food were health food stores, and the nearest one was an almost two-hour drive from our little town.

Ingredients & Labels

So we learned to read ingredient labels as best we could, although we always struggled with it somewhat because we learned that gluten could be “hiding” in many things on an ingredient label; for example, in modified food starch, or in natural or artificial flavoring.  Then there were all the ingredients that we could hardly pronounce, much less figure out if they contained gluten.  But, we did the best we could.

Jill started eating more naturally gluten-free foods, and whenever we were near a health food store, we would stop in and buy a few items that were labeled gluten-free.  We found that most of it: 1) Was horrifically expensive, 2) In spite of being horrifically expensive, it also came in horrifically small quantities or packages, and 3) Generally didn’t taste all that great.

Fortunately much of that has changed since 2003.  Gluten-free food is much more readily available.  Food labeling has hugely improved, although it’s still somewhat lacking.  A lot of gluten-free food is still on the pricey side, and package size is still small-ish in many cases, but taste and variety have improved by a good margin.

The Family Connection

As an aside, in 2015, our oldest daughter also received a diagnosis of celiac disease.  She had occasional unexplained stomach aches, but nothing severe.  She was diagnosed at age 10, after a tTG-IgA blood test came back elevated.  The gluten-free diet has been somewhat difficult for her, as it is for many kids.  We have tried to supply her school teachers with gluten-free treats for those times when there are class parties or other activities.  We do the same for her youth group at church.  She’s now on the high school drill team, and has to carry a cooler full of gluten-free food on the bus whenever they travel to competitions.  She generally deals with it well, but she sometimes gets frustrated and depressed that she can’t enjoy the same foods as her peers.

Chronic Illness Relapse

Within a year or so of going gluten-free, Jill’s symptoms gradually subsided to the point where she felt pretty well most of the time.  That was a huge development.  We thought that we finally had the answer, and she would shortly be symptom-free once her gut finished healing.

However, as time progressed, the opposite happened.  Things began going downhill again.  Her abdominal pains returned, and gradually, some seemingly neurological issues started popping up; heart palpitations, numbness and tingling in legs and arms, pinched nerves, strange burning sensations in localized areas, that would sometimes radiate to other areas, etc.  She gradually developed allergies to most fruits, vegetables, and nuts, which made a naturally gluten-free diet much more difficult.  Headaches and migraines were common, as well as chronic fatigue, body pain, bone pain, and joint pain.

Again, No Answers

For over seventeen years, since her celiac diagnosis, she has continued to go to doctors, submitting to what seems like almost every test in the book.  But nothing; no answers.

During this time period, Jill would return to her doctor every few years for repeat biopsies to ensure that there was no intestinal damage occurring.  Each time, the results were negative for villous atrophy, so we ruled out celiac as the cause of all these symptoms, and assumed that we were doing an adequate job keeping gluten out of her diet.

Having ruled out celiac, we began looking into other possible explanations for her chronic illness.  Since traditional medicine seemed to have no reliable answers for us, aside from telling us that everything is “normal”, we also tried the alternative medicine route.  While we’ve seen some moderate improvements in a few areas with certain alternative treatments, so far, nothing has amounted to a cure.

The Return of Active Celiac Disease

As I stated, since her celiac disease diagnosis, Jill has had repeat biopsies every few years just to verify that it is not active again, and each time the results have come back negative.  That continued to be the case, until 2017, when suddenly a biopsy resulted in a report of blunted villi.  This was a frustrating development, to say the least.  We couldn’t figure out where gluten might be getting in.  Nothing notable had changed with her diet.  She had been as careful as ever to avoid gluten.

So, the questioning began: Is there something in her diet that contains gluten that we’re not aware of?  Has her celiac disease suddenly morphed into refractory celiac disease?  Could the blunted villi be the result of some other condition, unrelated to celiac?  The gastroenterologist who performed this latest biopsy told us to watch her diet more closely.  We have done that to the best of our ability.   At some point in the not-too-distant future, we’ll do another biopsy and hopefully find that her intestinal lining is back to normal.  Hopefully…

Where we’re at now

At the time of this writing, we are still in the process of finding ways to fully restore Jill’s health.  We’ve looked at all sorts of other conditions including Lyme Disease, Endometriosis, Hyperparathyroidism, and on and on. Some alternative treatments have been done in connection to some of these conditions. Although we have seen improvements in many areas, there are still unexplained symptoms, and we are still seeking for further explanations for her chronic illness. I always question the possibility of how much celiac disease is contributing to it all, even while being on a gluten-free diet.

Questions…

So the questions continue to loom over us.  Is it possible that she never really fully recovered after she went gluten-free?  We saw unquestionable improvement for a while, so we think she was recovering.  But then her symptoms began to return.  Was that actually the result of gluten making its way back into her diet from some unknown source?  Could it have been cross-contamination from other gluten-containing foods in our home, since our entire family was not gluten-free?  Could she have another autoimmune condition in addition to celiac disease?  It’s well documented that celiacs frequently wind up with multiple autoimmune diseases. Or could the follow-up biopsies have possibly resulted in false negative results? If that were the case, it’s possible that celiac disease never really went into remission, and has been causing these issues all along.

Time to Clean House

These are the questions that have been coursing through my head for quite some time.  There is one thing that is certain, however.  We have to be absolutely sure that we eliminate gluten from Jill’s diet.  Regardless of whether she may also have Lyme Disease, or Fibromyalgia, or IBS, or you name it, elimination of gluten is critical.  And based on that last biopsy, we realized we were probably not doing a good enough job of that.

So, after a period of denial where we basically stuck our heads in the sand and did nothing, we decided we needed to address this nagging gluten contamination possibility.  And that is when we decided to clean house.  We spent a month or so during the summer of 2018, during which time we turned our kitchen upside down and eliminated the gluten.  You can read the details of that process here.

Verifying the Food Supply

So, as we were “de-glutenizing” our house, I found myself considering what more we might be able to do to ensure that we keep the gluten out.  The thought occurred to me that we needed a way to be able to test all the items she’s eating just to be certain that there’s no gluten getting through.  That thought was the genesis of this website, “Is It Truly Gluten Free?”.

I decided to pick up the Nima Sensor, and invest in a bunch of capsules, with the intention of testing every food that Jill, or our daughter, came into contact with.  Somewhere in that line of thought I came to the realization that there are probably many gluten-sensitive people out there struggling with their own food choices.  So, rather than test all this stuff solely for the benefit of our family alone, I decided to publish the results here, and perhaps take it a step further by testing as many food products as I can get my hands on.  In this way, I’m hoping that our family’s ongoing journey with celiac disease can hopefully be of help to others in their quest for improved health.

Conclusion?  Well, not yet…

So, fast-forward to 2019… While we’ve not yet reached the conclusion to our long and winding road, that’s the backstory to it.  It wound up being longer than I was expecting.  Sorry about that.  But why provide a backstory if you don’t give the relevant details?

If you’re here on “Is It Truly Gluten Free?” because you, or a loved one, are struggling with maintaining a gluten-free diet.  I sincerely hope that the information I provide on this website will be of help to you in navigating the often murky waters of gluten-free living.

 

Photo by Jack Anstey on Unsplash

0 Comments

Submit a Comment

Your email address will not be published. Required fields are marked *

Welcome!

Share this: