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  • Kim Duvall

    Playing Doctor: Gluten Intolerance When the Tests Are Negative

    Kim Duvall
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    Reviewed and edited by a celiac disease expert.

      Journal of Gluten Sensitivity Spring 2009 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.


    Moment of discovery! Image: CC BY 2.0--Jonas Stocker
    Caption: Moment of discovery! Image: CC BY 2.0--Jonas Stocker

    Celiac.com 06/05/2020 - Bored in a doctor’s waiting room, my husband started picking through the usual magazines.  The choices were slim and the chance of reading anything useful even slimmer.  He didn’t need to know how to eliminate cellulite in 7 days or the best recipe for chicken tetrazzini.  He wasn’t interested in whether Jennifer Aniston was over Brad Pitt.  One magazine looked somewhat respectable, maybe even educational.  He flipped through and stopped at an article.

    And that’s when it happened.  My medical mystery began to unravel.



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    Twenty years of fluctuating symptoms and ill health, unexplained (or misdiagnosed) by five internists, five psychiatrists, five psychologists, four rheumatologists, four primary care physicians, two gastroenterologists, two gynecologists, two nurse practitioners, two neurologists, two family doctors, one allergist, one immunologist, four MRIs, three biopsies, three ultrasounds, two surgeries, two CT Scans, one endoscopy, one EMG, one EEG, one EKG, and too many blood tests to count, and my husband of great brilliance but no medical training suggested what no one else had.

    The article was about celiac disease and gluten sensitivity.  He said it sounded like me.  I knew a bit about celiac disease, and I had shopped in health food stores since my teens, passing by gluten-free items for years.  Sure, wheat might be bad for some folks, but surely not for me.  I was a “health food nut.” I ate my whole grains by the handful: whole wheat pasta, whole wheat cookies, whole wheat bread, whole wheat cereal.  The more fiber, the better.  Next to me, rabbits looked fiber-deficient.  Besides, I had chronic constipation (except for the month-long stretches of diarrhea), so I needed all that fiber.  Whole wheat was a “health food.” Spelt, triticale, kamut, barley, steel cut oats—bring ’em on!

    Despite my “healthy” diet, each year brought worsening health.  (One doctor told me to expect it, as I had recently turned 30.) Fatigue and flu-like pain were the symptoms that bothered me most, not to discount the years of major depression.  Night sweats and abnormal menstrual periods certainly seemed like hormonal problems, but the doctors had no answers.  Nerve pain was not fun, but I got used to the stinging, burning shocks that would attack my legs randomly.  If people were around, I would play it off as a bug bite or mosquito.  They bought it.

    My stomach problems would show up for about a year at a time and then stop on their own.  The prescription drugs I was given for acid reflux and slow motility had some effect, but they didn’t address the feeling that a bony alien was pushing its way through my stomach and intestines, scratching its way through with jagged nails on its hands and feet.  The meds also didn’t address the pain that spiked when I would yawn or inhale and that radiated into my right shoulder.

    When the involuntary twitches and jerks in my legs, arms, and back began, I feared multiple sclerosis or Parkinson’s disease.  Maybe even Huntington’s disease.  Whatever it was, it couldn’t be good.  The jerks happened when I was still.  My legs would fly up off the recliner foot-rest, or my upper back would arch and toss me forward over my desk and keyboard.  Disturbing stuff.  It became more frequent over time and more severe in intensity.  I wondered if an exorcism was in my future.  

    My body seemed to have a “tag team” approach to fighting whatever was making me sick.  I remember one spring when the fatigue and muscle aches latched on.  No other symptoms—just tremendous fatigue and muscle aches.  About two months later, both lifted quite noticeably over a 24-hour period.  I woke up the following morning pain free and with a decent amount of energy.

    I also woke up with large red welts on my neck.  As my fingers tried to get a sense of their shape and reach, they began to itch.  And swell.  Badly.  I started my shower and hoped they would fade, but the hot water made them itch more, grow larger, and spread.  A few days later, they covered my torso, buttocks, and thighs.  At their peak, they found their way to my chin, lips, and eyelids.  They itched worse than chicken pox and weren’t much prettier.  The hives continued for several months, weakly responding to medication.  At their end, they were written off by my doctor as idiopathic urticaria—hives for an unknown reason.  I was happy to see them go.

    A couple days later, sans hives, I found myself standing at my boss’s office door, whispering the reason why I needed to go home.  I didn’t feel sick, and I didn’t look sick, but she agreed that ten episodes of diarrhea before noon was good enough reason to leave.  The pattern continued for 6 weeks.  I wasn’t surprised that it ended when the fatigue started up again.

    After my husband told me about the article on celiac disease and gluten sensitivity, I started my research.  Sure enough, it did sound like me.  The symptoms on most of the celiac disease websites matched my own, with one exception—the involuntary jerks or “myoclonus.” This was the symptom that concerned me the most.  It wasn’t as debilitating as the fatigue and flu-like pain but was equally worrisome and much scarier.  I kept researching.  If gluten was the culprit, not only would I have an explanation for the jerks, but I could be as good as cured—of all of it.

    With a few more days of research in a scientific journal database (I wanted hard evidence) I found the connection I sought.  Gluten had been found to be the cause of several neurological disorders, including myoclonus, and many other neurological disorders were proven to respond to a gluten-free diet.

    I announced to my husband that I would go gluten-free for a year.  Some symptoms and disorders, the research said, could take 6 months to a year to reverse.  Myoclonus might not reverse ever.  I scheduled an appointment with my doctor and requested the celiac disease panel of blood tests.  Regardless of the results, I would go gluten-free for a year, but I wanted to be tested for celiac disease first.  My husband and I had watched the diagnoses and suspected diagnoses come and go over the years.  This one we felt good about.  

    I kept eating my gluten-laden “health foods” until the day of the blood test.  I wanted to make sure those antibodies showed themselves to whoever was looking for them.  It was the most giddy I’ve been for a blood test.  I drove home from the lab with a large bruised lump in the crook of my left arm—a symbol, a battle scar from a long fight.

    That evening, I began a strict gluten-free diet.  My cupboards, refrigerator, and freezer had undergone a transformation—my bathroom drawers, too.  I had contacted lipstick makers and toothpaste companies.  I was ready to be gluten-free.

    What I wasn’t prepared for was the dramatic change that started in a matter of days.  My stomach problems were the first to respond.  My intestines were quiet—simply quiet.  For anyone who has struggled with gastrointestinal issues, a sense of quiet and calm in one’s torso is a blessed thing.  By the end of the week, the jerks had stopped.  And within one week, to my happy amazement, the fatigue was gone.  Gone.  I love saying it.  The fatigue was (and still is) gone.

    Two weeks later, free of fatigue, muscle pain, muscle weakness, night sweats, brain fog, confusion, depression, diarrhea, stomach pain, constipation, involuntary muscle jerks, stuttering, shortness of breath, dizziness, irritability, nerve pain, hives, intestinal distress, acid reflux, and bloating, I returned to my doctor to learn the results of the test.  Before she could tell me the results, I described my remarkable recovery, beaming.  She seemed happy for me and reached for her laptop, showing me the lab results.  The lab ran the first part of the test, which was negative, and because it was negative, the other parts of the test weren’t necessary, she explained.  So the lab techs stopped there.  At the bottom of the page was a section for my doctor’s comments.  She had written “No gluten intolerance.” She went on to say that my reaction to the gluten-free diet might be from removing the carbohydrates, sugars, and starches that came with those foods.  I smiled.  I hadn’t done the math, but I was reasonably sure there were carbs, sugars, and starches in my brown rice pasta, gluten-free brownies, gluten-free cookies, gluten-free cereal, brown-rice tortillas, potato-flour bread, and so on.  It was clear that she was speaking from the standpoint of traditional western medicine.  There was no point arguing.  She could see my improvement for herself, and I could only hope she would remember it if other patients asked whether a gluten-free diet could help them.

    For so many years, I held out for a diagnosis, desperate to find the cause of my ill health so that I could properly address it.  Even if the news was devastating, at least I would know what was going on in my body and what I was facing.  At least I would know that I was not going crazy and that it was not my imagination that something was, indeed, wrong with me.  For years, I experienced the emotional crash when test after test came back negative.  “You’re fine!” the doctors would say, as if that was supposed to make me fine and wipe away my symptoms.  

    I now see that the test results were needless and the celiac disease panel a mere formality.  My dramatic and profound response to the gluten-free diet is hard evidence that I am gluten intolerant.

    I had been diagnosed with irritable bowel syndrome, acid reflux, major depression, bipolar depression, fibromyalgia, chronic fatigue syndrome, and idiopathic urticaria.  I have been tested for and suspected of having Sjogren’s syndrome, lupus, rheumatoid arthritis, multiple sclerosis, hypothyroidism, myasthenia gravis, Hodgkin’s lymphoma, non-Hodgkin’s lymphoma, and HIV.  These are the ones I can remember, anyway.  I still have some tender points in my muscles that are typical of fibromyalgia, but as long as no one pushes on these points—like a rheumatologist during an exam—I am asymptomatic for fibromyalgia.

    I would bet I am not so unique and that others can relate to my experiences.  Whether the medical community responds to the lifelong research that many of us have done, using ourselves as guinea pigs, is not known.  The more important lesson is that for anyone who still suffers from undiagnosed symptoms, regardless of what he or she has been told by doctors and regardless of what the lab results say, adhering to a gluten-free diet may be the answer.  Husband 1, Doctors zip.

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    Guest The mind is powerful

    Posted

    Psychosomatic.. Ever consider that?  People who focus on diet often create their own conditions.  Or else you just ignore medical science (the tests) and believe what you want to believe.

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    On 6/5/2020 at 10:43 PM, Guest The mind is powerful said:

    Psychosomatic.. Ever consider that?  People who focus on diet often create their own conditions.  Or else you just ignore medical science (the tests) and believe what you want to believe.

    My experience was just like her without all the testing and doctors. A Google search help me find the answer from people like her. My DNA test indicate that I have two genes that code for gluten sensitivity; all my medical problems went away by going gluten free do you thing that all these problems were Psychosomatic?  

    1-      Irregularity.                                   13- Lack of bladder control

    2-      Intestinal noise.                             14- Light sensitivity

    3-      Irregular stool.                              15- Dandruff/itchy scalp

    4-      Tooth enamel defects.                  16- Lack of sleep

    5-      Rash in upper arms.                      17- Frequents ear infections.

    6-      Abdominal swelling.                     18- Formative tissues in eyes

    7-      Depression.                                   19- calcium malabsorption  

    8-      Fatigue.                                         20- High blood pressure

    9-      Irritability.                                     21- Abnormal heart palpitations

    10-  Lactose intolerance.                      22- Muscle spasm

    11-  Loss of memory.                           23- Joints pain

    12-  Canker sores/ Mouth ulcers.         24- Urge to commit suicide

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    On 6/5/2020 at 10:43 PM, Guest The mind is powerful said:

    Psychosomatic.. Ever consider that?  People who focus on diet often create their own conditions.  Or else you just ignore medical science (the tests) and believe what you want to believe.

    Sounds like you are a follower of what Dr. Hyman calls the "name it, blame it and tame it" school of medicine.  I believe we stand now on the hinge point between that approach and the more systemic, complicated approach of functional medicine.  

    I too "flunked" the gluten tolerance test.  But after seeing that 2 months into a gluten free diet I was not anemic for the first time since age 4 AND that all my rheumatoid factor tests dropped from sky high IgG, moderately high IgM and  mildly high IgA  to what one subsequent hematologist called "boring," then every doctor agrees that GTT test or no, I have Celiac.  My road to diagnosis was not as truncated, but still similar to what is described above.  After a friend nagged me into trying a gluten free diet, within days -- if not hours! --  my energy levels soared!  And now, if I accidentally consume gluten (my husband's favorite local restaurant is not strict about what they label as gluten-free) then, despite having coped with what to me is a  poison as best as possible for so many years, its as if my whole GI tract has a tantrum!  "No, NO NO, we will NOT put up with this again!  Get it out!  Now.  Vomit and diarrhea!  We will NOT put up with this crap invading our system any more!  WE thought the brain had finally got the message!  Well, we'll show it.  Who cares if the brain becomes "embarrassed.  We'll teach it a lesson.  GET THAT STUFF OUT NOW!"  

    And there I go.  Telling the waiter that " I am going to step into the parking lot now with my grocery bag so that my retching will not upset other customers.  And, No, don't bother bagging my food.  But meet me in the parking lot with the check and I'll pay from there."  (Then the manager came out, apologized and acknowledged that other customers had accused them of not honestly listing  which selections are gluten free.  And no, you don't have to pay for diinner.  They are sorry.

    So .... is that reaction to a food which I did not know others had "pscychosomatically" reacted to or more evidence of psychosomatism?  

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    My journey was just like hers except it was only 18 months long.  I was dying and I knew it.  I was down to 90 ibs and couldn't walk.  After five doctors, and all the tests every Dr. had nothing to say except lets do the tests over again.   I finally told then all to take a long walk off a short pier and I did what they all said ot to do, I put myself on a gluten-free diet.  Within one week, same resuls, stomach pain and gurgling gone, diarrhea and vomiting gone.  Now I just had to figure out how to gain weight.  It took a nutritionist to help me with that but I eventually gained weight and have been well ever since.  Doctors don't know it all, at best they know what they have been taught in medical school by the doctors and professors who don't know it all.  You have to do it by youself.  

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    On 6/5/2020 at 10:43 PM, Guest The mind is powerful said:

    Psychosomatic.. Ever consider that?  People who focus on diet often create their own conditions.  Or else you just ignore medical science (the tests) and believe what you want to believe.

    Your comment is reflective of what doctors and others do to us.  NO ONE understands celiacs or gluten intolerance.  Over time, maybe the medical community will finally get up to speed.

    I have both genes for celiacs but didn't have the antibodies.  I quit eating gluten for 6-months before they did the endoscopy (big mistake but I had constant diarrhea and couldn't leave the house) so my test came back negative.

    Finding this site was a God send.  I read about what others are going through with their symptoms and mine matched a majority of those who have celiacs.  I have come to realize that my health is in my own hands, even in the face of others' judgement.

     

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    There are some people who flunk the blood antibodies tests but still have celiac disease.  I think it's about 10% of tested people.  There are also people with DH (dermatitis herpetiformis) that are best tested by a skin biopsy, not the endoscopy.  DH is a skin condition that only people with celiac disease get.

    There are many more people with gluten intolerance than people with celiac disease.  While they don't have testing for gluten intolerance, there is a theory that some cases of it are related to certain sugars.

    About 30% of people in the USA have at least one of the major genes for celiac disease.  Not all 30% will develop celiac though.  Although any person with the gene or genes could develop celiac at any time of life.  The celiac genes are also associated with other AI (auto-immune) conditions.  So people with AI conditions in their family may have the celiac genes.

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  • About Me

    Kim Duvall is the Editorial Manager, Neurosurgery at the University Hospitals Case Medical Center in Cleveland, Ohio.


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