My investigation into gluten began more than 20 years ago and revealed some surprising things about this problematic protein.
I interviewed a woman named Victoria for my book “Going Against the Grain” (2002) who had unexplained low blood iron counts that kept getting lower each year for, believe it or not, a period of 20 years.
At one point, she was taking nine iron supplements a day, and none of the doctors she had seen could determine why she wasn’t properly absorbing iron. She grew sicker: She kept getting more and more exhausted, extremely pale and short of breath, and her fingernails were curling up.
Finally, after a two-decade-long health journey, she ended up seeing one more gastroenterologist, who gave her the answer to her condition: She had celiac disease, an autoimmune reaction in the gut to the gluten in wheat and other grains, and it could be corrected with a change in her diet.
After “Going Against the Grain” was published, a client named Pam, who was diagnosed with osteoporosis at age 35, came to see me because she kept breaking small bones in her feet when she hiked or biked. I was shocked to learn this.
Although she had tested negative for celiac disease, she had enough other symptoms pointing to a possible non-celiac gluten sensitivity that I suggested she try a gluten-free diet to see if it improved both her overall health and her bone health.
To my delight, it did.
Within six months, not only did other aspects of her health resolve, but her bone density dramatically improved, and she never broke another bone in her feet again. Her doctor was truly amazed by these results.
Celiac Disease
People can have different reactions to eating gluten, a protein in wheat, rye, barley, oats, and other less well-known grains such as triticale, farro, einkorn, spelt, and kamut.Some people develop celiac disease, an autoimmune disorder characterized by damage to the small intestine lining. Previously considered rare, celiac disease is now recognized as common, with an increasing prevalence in the United States and around the world.
After blood testing for the disease began, researchers gained a broader understanding of the wide variety of symptoms celiac disease could present with. Although diarrhea continues to be a common symptom, most patients receive their diagnosis based on what are called “nonclassical” presentations.
- Abdominal pain
- Bloating
- Constipation
- Abnormal liver biochemistry
- Neurologic symptoms (migraines, epilepsy, and ataxia or loss of muscle coordination)
- Iron-deficiency anemia
- Bone disease (including osteopenia and osteoporosis)
- Fatigue
- Delayed puberty
- Type 1 diabetes
- Autoimmune thyroid disease
- Down syndrome
- Skin conditions (psoriasis, eczema, and dermatitis herpetiformis)
Individuals with untreated celiac disease can have osteoporosis because of chronic inflammation and malabsorption of calcium and vitamin D. These patients are at increased risk of fracture.
People with untreated celiac disease also have an increased risk of infertility, pregnancies of poor outcome, and intestinal lymphoma, a small intestine cancer.
Non-Celiac Gluten Sensitivity
Non-celiac gluten sensitivity, also called gluten sensitivity or gluten intolerance, is a condition characterized by gastrointestinal and non-gastrointestinal symptoms from eating gluten, but it isn’t an autoimmune reaction.Adverse symptoms can develop between a few hours up to one day after eating gluten. The symptoms can vary and can be similar to symptoms that people with celiac disease experience.
- Abdominal pain
- Bloating
- Diarrhea
- Nausea
- Gastroesophageal reflux disease (GERD)
- Tiredness
- Headache
- Anxiety
- Foggy mind
- Arm and leg numbness
- Joint and muscle pain resembling fibromyalgia
- Anemia
- Depression
- Dermatitis
- Skin rash
Gluten sensitivity is found more frequently in adults than in children and is much more common in women than in men.
Although there still may be skepticism or lack of knowledge about the condition by some conventional medical doctors, gluten sensitivity was first described in the medical literature as early as 1980, and reports have continued through the decades. In 2008, two important revelations about gluten sensitivity came to light.
The first was that we learned about an important distinction between gluten sensitivity and celiac disease. With celiac disease, the innate immune system, the most ancestral form of defense we have against “invaders,” responds and coordinates with the adaptive immune system, a more recent branch of the immune system, to produce the autoimmune reaction that takes place.
The second was that we learned that humans aren’t alone in having non-celiac gluten sensitivity. Rhesus monkeys, who are genetically similar to humans, have it too.
Nearly all of those had elevated IgA and/or IgG anti-gliadin antibodies, which some holistic practitioners believe are good indicators of gluten sensitivity.
Only a few of the monkeys tested positive for celiac disease.
When the animals were fed a monkey chow that was gluten-free, their antibody levels normalized, and symptoms disappeared.
Why Going Gluten-Free Is So Important
The only way to eliminate symptoms in both celiac disease and gluten sensitivity and to keep them from coming back is to eat a gluten-free diet. This means not “cheating” on occasion or having just “a little bit” of gluten.It’s often easy for people who experience troublesome symptoms from either condition to avoid cheating because they feel so badly when symptoms flare up.
However, people who don’t have noticeable symptoms and have been unknowingly malabsorbing nutrients may find it more difficult to give up gluten-containing foods altogether.
These people may have received the diagnosis of celiac disease after first discovering they had a condition such as iron-deficiency anemia or osteoporosis.
Problems With ‘Gluten-Free’ Labels
To eat a diet with no gluten, you have to buy food that’s truly gluten-free. When you see a label that says “gluten-free,” you probably assume that it means no gluten. But that isn’t what it means.The Food and Drug Administration’s (FDA’s) gluten-free food labeling rule, which was finalized in 2013, specifies that any foods that carry the label “gluten-free,” “no gluten,” “free of gluten,” or “without gluten” must contain less than 20 parts per million (ppm) of gluten.
A number of celiac experts think this amount is too high.
During a comment period for feedback on the guidelines before they were enacted, hundreds of people wrote in.
Overall, though, there’s limited research and much uncertainty about the threshold of toxicity of gluten in different people.
The Risk of Gluten Contamination
Many practitioners who prescribe a gluten-free diet recommend eating naturally gluten-free grains, seeds, and flours. But these foods actually are often at risk for gluten contamination.Also, 32 percent of naturally gluten-free grains and flours tested contained gluten in amounts greater than 20 ppm.
Given those findings, “gluten contamination of inherently gluten-free grains, seeds, and flours not labeled gluten-free is a legitimate concern,” the researchers wrote.
That standard is twice as strict as the FDA standard for the “gluten-free” claim.
