One of my daughters is sensitive to gluten.  I knew it made her seasonal allergies worse, but I didn’t realize some of its other effects until she shared them with me.  When she did, it tore my heart out.  She said, “Mom, when I eat that stuff, it makes me really sad.  I cry and I can’t fall to sleep at night.”  Whoa.

Research indicates that one in 133 people have celiac disease (a serious, destructive autoimmune disorder to gluten) in the USA and 6% have gluten-sensitivity (The exact mechanism is still being determined but it does not appear to be destructive like celiac disease–but symptoms may be just as uncomfortable!).  The proteins in gluten are very, very, very difficult proteins for our bodies to digest.  So what?  Haven’t they always been?  Well, this has become more problematic in our current time as the bacteria we humans rely on to guard our gut linings have been terrorized by antibiotics, food preservatives, and reliance on processed foods.  When the proteins are not broken down properly, our immune systems can be triggered in different ways.  Some people’s bodies handle this in stride.  Others do not, and each person will have his own unique response resulting in different symptoms.

Please remember, my articles are never intended for medical advice.  I observe.  I study.  I read.  I write up what I think is interesting and others may benefit from reading.  It’s your job to be safe, talk to your doctor, and be a diligent bulldog for your health.

Three Reasons Doctors Shun the Gluten-Free Idea 

If gluten is such an issue, why doesn’t your doctor tell you about it?  There are a few reasons.  One, it is easy to dismiss a gluten-free diet because research on atypical celiac presentation and gluten-sensitivity is slow to trickle down to doctors practicing in the community.  They aren’t going to jump on the bandwagon simply for some article that shows up in your USA Today.  However, research studies and case reports abound on the negative effects of gluten and other wheat proteins and the changing face of celiac disease.  Alessio Fasano, MD and colleagues have made amazing discoveries about celiac disease, gluten-sensitivity, wheat allergy, and gluten in general.  Your decision on wheat would be remiss if you didn’t consider Dr. Fasano’s work.  On the other hand, he is fairly conservative, but I think that is what has allowed his ideas to surface so quickly and to be well-received by the stubborn medical community.

Secondly, gluten problems can appear so differently from person to person!  Celiac disease and gluten sensitivity can cause diverse symptoms, and frustratingly there is no objective test for gluten sensitivity.  Nowadays, celiac disease is presenting with strange, atypical symptoms which doctors are not prepared to identify!  It’s a tough gluten-disorder diagnostic world!  I have a friend whose mother was diagnosed with celiac disease a couple of years ago–and her mom is in her 70s!  No doctor was thinking of this until the poor woman drove to the Mayo ER and said, “I’m not leaving this hospital till you figure out what’s wrong with me!”

And thirdly, the glut of gluten-free processed food products on the market targeting susceptible consumers is preposterous and attack-worthy.  People associate gluten-free with healthy.  No.  Gluten-free oranges are healthy.  Gluten-free broccoli is healthy.  Gluten-free shrimp are healthy.  But gluten-free bread and gluten-free cookies are not.

And lastly (I know I said “a few,” but I just thought of this one.), most patients and most doctors think a gluten-free lifestyle is too hard.

What Symptoms Would I Look for to Consider a Gluten-Disorder?

What kind of symptoms would a gluten-sensitive person experience?  I’ve listed some.  Maybe you’ll see something here on your health record or that of a loved one.  My list is not conclusive.  I realize now I left off skin disorders, like eczema.

• Joint pain and swelling: Gluten-sensitive people may present with pain and swelling in one or more joints. The understanding of how and why this happens is not clear yet. The symptoms may not occur right away after gluten is eaten (It can take several days.), and this delayed onset can make diagnosis confusing. Besides causing joints to become painful and swollen, gluten can also make known arthritis more painful, including rheumatoid arthritis.
• Stomach troubles: Some people will have irritable bowel symptoms with stomach pain, bloating, and diarrhea. Others will simply have stubborn constipation. It is not understood why some people get diarrhea and others get constipation, but recent studies show that a gluten-free diet can help these digestive symptoms.
• Fibromyalgia and fatigue symptoms: Sometimes people develop painful muscles as a negative response to gluten. The severe muscle aches can be debilitating and receive a diagnosis of fibromyalgia, usually accompanied by chronic fatigue. Gluten-removal for some people helps eliminate or reduce this chronic pain and fatigue. Severe fatigue and tiredness can occur, too, without the muscle aches, and again, gluten removal wonderfully helps some people regain their vitality.
• Headaches: Some people will get headaches with gluten exposure, but in addition, they may also have dizziness and a “fogginess” in their head that they cannot shake no matter how much sleep or caffeine they get. Imagine their satisfaction when they wake up headache-free and clear-headed for the first time in years.
• ADHD and autism symptoms: Removing gluten from a child’s diet is challenging in today’s world, but studies do suggest that removal can help ADHD and autism symptoms. However, in autism, the studies are done most often with a combination of gluten and dairy removal, and so it is hard to attribute the improvement to gluten over dairy.
• Depression, anxiety, bipolar disorder, schizophrenia, and obsessive compulsive disorder: There is no doubt that the diagnosis of mental illness is tragically on the rise. Amazingly, some people find relief from these mental illnesses with simple dietary changes such as gluten removal. But how many people with depression or anxiety are prescribed dietary changes such as a gluten-free diet? Not many. Depression, anxiety, bipolar disorder (a disease which alternates between high, energetic, sometimes delusional symptoms and extreme depression), schizophrenia, and obsessive compulsive disorder (a disease where a person has repetitive thoughts and actions they cannot remove from their minds) may be the prime symptoms for some gluten-sensitive individuals.  Personally, I know a bipolar patient who told me, “I am NOT giving up my morning toast, Terri.”  Okay then.

If you have chronic, troubling symptoms, don’t wait for your doctor to tell you that you have gluten-sensitivity or atypical celiac disease.  Ask your doctor to please evaluate you or your child for celiac disease and then ask if it is safe for you to proceed to a gluten-free diet.  Don’t be deterred if your doctor dismisses your concern and belittles your endeavors.  Your doctor may think going gluten-free will not work–and maybe it will not–but there is plenty of research to support your trial.  But first make sure there is not celiac disease!  A celiac patient should not even use the same toaster that has toasted gluten-containing products!  A celiac patient must know where “maltodextrin” came from.

Closing

What questions do you have?  I know this diet stuff is confusing and immensely complex.  And I know that’s a part of what makes people throw their hands up and go eat whatever their little, ol’ tongues desire.  I understand that.  I get it.  But I also know the statistics, and I know that gluten affects some of my own family members.  So does my daughter ever eat gluten?  She does, usually on vacation or at birthdays or potlucks.  She acknowledges an unusual passion for gluten products, and she has asked me (I did not suggest it.  I lead by example and try to teach my kids information and good observation so they can make good decisions their whole lives through.  I hope my daughters never have eating disorders and intend to do all I can to promote a positive relationship to food.) to help her moderate portions and to not order certain things on vacation or special dinners out.  She is becoming her own health advocate.  Please become yours.

Terri

PS:  My take on gluten and grains is much, much more complex than these mere 1000 words allow.  But I hope this article raises awareness that gluten can definitely be a problem!  (Of course, so can other foods as well.  And this leads us to leaky gut.  And so on.  This stuff is so fascinating.)

Sources:

1. Non-Coeliac Gluten Sensitivity and Autoimmunity: A Case Report.  Isasi C, Colmenero I, Casco F, et al.  European Journal of Case Reports in Internal Medicine.   EJCRIM.  2014;1
2. Spectrum of gluten-related disorders: consensus on new nomenclature and classification.  Sapone A, Bai JC, Ciacci C, et al.  BMC Medicine.  2012. 10:13.
3. Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten-Sensitivity. Jackson JR, Eaton WW, Cascella NG, et al.  Psychiatric Quarterly.  March 2012, Volume 83, Issue 1, pp91-102.
4. Fibromyalgia and non-gluten sensitivity: a description with remission of fibromyalgia.  Isasi C, Colmenero I, Casco F, et al.  Rheumatology International.  2014; 34 (11):  1607-1612.
5. Fasano, Alessio and Susie Flaherty.  Gluten Freedom.  Wiley, 2014.