Gluten is Not Responsible for Everything!

Celiac.com 04/23/2021 - The above phrase may seem to be an obvious statement.  However, I believe if many of us with gluten sensitivities look closely at our lives, we will find that we are apt to ascribe most of our physical abnormalities to gluten.  Not consuming gluten makes such a huge difference in one’s physical well being that many of us come to believe that gluten must be responsible for just about everything when we feel “bad.”

Seeking information on life without gluten, I regularly read a number of celiac disease support forums on the Internet.  It is not uncommon to see posts about all kinds of symptoms such as tingling, headaches, anxiety, stomach cramps, limb weakness, and skin problems (which may or may not be dermatitis herpetiformis).  The authors of these posts are almost always seeking others with celiac disease who have experienced similar problems.

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These questions are posed out of a personal sense that eating gluten is associated with the bothersome, even worrisome, physical symptom in question.  Indeed, the connections may be very real!  But once an individual hears of another person who has similar problems, they rest easy—assured that symptoms have been only a “gluten” effect. 

Recent events in my own health have caused me to clearly see that one can, indeed, experience symptoms connected to gluten ingestion that are certainly real, but the symptoms can also be harbingers of an underlying disease that has nothing at all to do with celiac.  In other words, a disease separate from celiac may be present, and exposure to gluten may worsen the symptoms of that disease.  Conversely, not eating gluten may lessen the symptoms, but will not cure the disease.  Eat no gluten, the symptoms go away … but the disease remains, almost insidiously in silence.       

If you have a persistent medical problem—even if it improves with eating gluten free—my advice is to GO TO YOUR DOCTOR and MAKE SURE to have full diagnostic tests. Do not leave your diagnosis to just asking others on a celiac support forum if they’ve experienced anything similar.  

For some years, I had a cascade of neurological symptoms.  They seemed to be small seizures, problems with my eyes, weakness in my hands, and electrical-shock type of pains down my back.  When I stopped eating gluten, these symptoms either went away completely or diminished to rare appearances.  I actually did go see a neurologist, but—at the time I saw him—I’d been eating gluten free for about 2 years, and most of my neurological symptoms had abated.  I also told him that if I did accidentally ingest gluten, some of the symptoms would return.

In an effort to not break our household bank by sending me for an MRI, the doctor agreed that whatever it was seemed to be associated with the gluten.  He was not worried, so neither was I.  We agreed I’d continue to avoid gluten, and...no MRI was done.

Until three years later, when I ended up unconscious on the bathroom floor from a grand mal seizure, and temporarily paralyzed on my left side.  I was rushed to the hospital with everyone thinking I’d had a stroke.  However, they immediately performed a CT scan and there it was.  I had a large, flat pancake-shaped meningioma tumor in the region of my frontal lobe. Within a week, I was in surgery for a craniotomy and it has now been removed, along with the brain tissue that was attached.  

This is a situation where eating gluten free actually ended up masking a significant medical problem that I had.  I cannot say why eating GF might have made things better.  I do know that a large part of my reaction to gluten is inflammation in my joints—so why not inflammation around the tumor as well, increasing the possibility of neurological problems?  

Such conjecture really matters little at this point.  I should have had an MRI years ago, to make sure there was nothing amiss—even though so many of my symptoms had improved after eating gluten free.  In fact, I was doing such a great job of being my own doctor about this, that my neurologist even believed my “diagnosis” of gluten-related problems to be the probable issue.  

Believe me, brain surgery is no picnic.  I did well, and had an excellent neurosurgeon, but even now—months post surgery—I am still recovering in many ways.  I cannot help but wonder if, three years ago when my doctor and I elected not to do that MRI, the discovery of the tumor then would have resulted in an easier process.  A smaller tumor might have led to less invasion of my brain tissue.

I hope my story helps others to stop and think.  Gluten can be such a powerful toxin that it may actually work to worsen symptoms of other diseases—or, by the same token, lessen those symptoms if you do not consume gluten.  However, eating or avoiding gluten does not necessarily make all other diseases disappear.  One may end up (as I did) blaming problems on gluten, and failing to seek out the cause of the underlying problem.  

We should all be very cautious about self-diagnosis.

Gluten truly is at the root of many problems for so many people.  It is natural and easy to begin to blame almost every physical discomfort on exposure to gluten.  Perhaps, with some of us, it is a convenient form of denial to decide “all I have to do is not eat gluten, and my health will be perfect.”  I learned that this kind of thinking can be a trap as well.

I’d like to leave the reader with one last thought.  There appears to be significant connections between gluten and the brain.  By Googling “celiac and brain disease,” one gets more than half a million hits.  Even the NIH page on celiac disease notes that one symptom may be seizures.  Who knows?  Someday scientists may find that gluten sensitivity is a root cause of meningioma tumors, just as it is for other diseases, such as osteoporosis.  Whether gluten played a role or not, the disease was there—possibly festering for decades—and I was closing my eyes to the reality of what it might truly be, under the blanket of “everything bad is about gluten”—until it could not be ignored any longer.