Alexandra* had been living with asthma for nearly 25 years, brought on initially by a dust mite allergy. The condition came and went with varying degrees of severity but in the last few years, a nasty cold turned bronchial and she developed a cough that never went away. Her primary care doctor put her on a daily asthma medication and she used a rescue for in-between seasons when humidity and moisture were heavy in the air. She was also treated for post-nasal drip and GERD with prednisone and acid-reducing medications, and was retested (pinprick test) for allergic reactions. The results were the same as her first one 25 years earlier. Meanwhile, her cough persisted throughout the day and she just got used to it.
At an annual biometric screening, her numbers showed healthy overall cholesterol numbers, but she was low in HDL or “good” cholesterol. Given that she ate a lot of healthy fats, including almonds, avocados and olive oil, and ate a mostly plant-based diet, the information didn’t add up.
Enter Lisa Foster, a condition management and health coach at Delaware Valley Accountable Care Organization (DVACO). Foster’s years of experience in nutrition counseling and “food as medicine” gave her insight into Alex’s condition, which also included iron-deficient anemia. Foster immediately suspected nutrient absorption issues—and that gluten just might be the key to all of it.
So what is gluten and what does gluten do?
Gluten is a protein commonly found in grains such as wheat, barley and rye. It is what gives bread its chewy texture. Wheat gluten is commonly found in many processed foods, including sauces and a number of vegetarian protein products, as well as the more obvious breads, pastas and cereals. While there are different types of gluten, such as corn gluten or rice gluten, it is wheat gluten that causes the most problems.
To make things even more complicated, the term “gluten sensitivity” is often used interchangeably with “gluten intolerance” and may also be confused with “gluten allergy” or “wheat allergy,” both of which are terms mistakenly used to describe celiac disease. Celiac disease is a genetic autoimmune disorder that causes the immune system to respond to gluten as something foreign. A person with celiac disease can have life-threatening symptoms, such as severe diarrhea, abdominal pain or rash, and up to 200 possible symptoms associated with eating or coming into contact with gluten found in food as well as in many personal care products on the market.
“We find that a majority of people who have celiac disease are undiagnosed or misdiagnosed as having other conditions,” says Keith Laskin, MD, gastroenterologist and medical director of the Celiac Center at Paoli Hospital, part of Main Line Health. “And because the symptoms of celiac disease can be so varied, it is important to remember that celiac disease may masquerade as many other conditions.”
Gluten and intestinal malabsorption
Foster explains what happens in the body in a person who is unable to tolerate gluten. “The gluten actually destroys the villi,” she says, referring to the tiny hair-like “fingers” in the intestines that absorb nutrients from food and help nourish the body. “You can be eating all the high-quality food you want, but if your body’s not absorbing nutrients it is not delivering these nutrients to the rest of your body.”
In Alex’s case, where she was doing all the right things and still dealing with certain conditions, everything pointed to something being “off” with the digestive process. But why now? Alex had never had this type of issue before. And besides, couldn’t the asthma be traced back to airborne allergens and the anemia be connected to heavy periods throughout her 40s?
Foster is used to working through this type of “denial” with her patients. After all, people who may be dealing with gluten issues have often been treated medically for many years and no one else had ever made this connection for them. Even allergy tests are not reliable when it comes to testing for gluten sensitivity.
Gluten sensitivity diagnosis and symptoms of gluten sensitivity in adultsWorking with another patient who had been living with migraine headaches three to four times a week, Foster asked if the person had ever looked at gluten as a possible culprit. At first the patient was skeptical and even resistant, but became willing to consider gluten and started to remove it from their diet. “The last time I spoke with them they were down to one migraine a week,” says Foster. “The severity is completely different and the person is now amazed that this really works.”
The older we get, Foster continues, the more damage we have, which is why gluten-related issues may not show up until later in life. “It takes longer for the body to become ‘inflamed,’ to show symptoms,” she explains. And symptoms for one person may be completely different from symptoms for another. One person may have anemia or a cough while another has migraines or digestive issues such as diarrhea, constipation, bloating or inflammation. The symptoms can present completely differently in a different body. In Alex’s case, the cough is a sign that the body is producing excess mucus—which is her body’s unique response to inflammation caused by the “invasion” of gluten.
How to tell if you’re gluten sensitive
If you have unexplained symptoms or you suspect that gluten may be affecting you, you could start by journaling what you eat and when, and what symptoms show up afterwards. Under Foster’s guidance, Alex began experimenting with one day “on” (eating something with gluten) followed by three days “off,” then repeating, with the ultimate goal of 14 days gluten-free before reintroducing gluten. This approach allowed Alex to assess changes in her symptoms and also see how long it took for the gluten response to kick in.
She noticed, for example, that it often took two to three days for the cough to show up after eating gluten. Several weeks into the experiment, Alex noticed the cough she had been living with day in and day out was mostly gone. Surprisingly, she also felt like her head was more clear and she had more energy. “I have been living with fatigue for so long,” she says, “and I attributed it to so many other things—but never gluten.”
Foster emphasizes that while certain types of tests may lead to diagnosis, good old-fashioned food journaling can be an important first step. Before removing gluten from your diet, however, be sure to talk to your doctor about a blood test to screen for celiac disease. Also, since a gluten-free diet is not necessarily a healthy diet, it is advisable to consult with a dietitian experienced with gluten-related disorders prior to eliminating gluten from your diet.
If you’re a Main Line Health employee enrolled in Main Line Health insurance benefits and wish to make an appointment with a DVACO health coach, call 610.225.6277 or email firstname.lastname@example.org.
Otherwise, check with your health insurance plan as many now offer coverage for a certain number of sessions each year with a nutrition counselor. “A certified health coach will look at you as a whole person, examining your diet and lifestyle,” says Foster, “and will help you dig deeper into any health problems you might be having.” A functional and integrative medicine doctor can also assist you in identifying food sensitivities.
When to see a celiac specialist near me
Gluten causes intestinal damage only in people with celiac disease, not in those with non-celiac gluten sensitivity. Celiac disease may or may not produce symptoms in children or adults, but if left undetected and untreated, it can cause long-term damage and consequences to your health.
It may be time to see a celiac specialist if you have been dealing with an unexplained illness for several months and your symptoms are not improving. You may also wish to undergo celiac disease screening if you or your child have:
- First-degree relatives (parent, child or sibling) with celiac disease
- Worrisome symptoms that might be associated with celiac disease
- An autoimmune disorder (which makes you more prone to celiac disease)
Dr. Laskin explains there are several blood tests used to screen for celiac disease antibodies. If these are present, a biopsy is generally recommended to confirm the diagnosis. Dr. Laskin adds that to be effectively tested for celiac disease, you must be on a gluten-containing diet. He also points out that a person may test positive for celiac disease but have no symptoms, or may have a negative blood test but the biopsy test is positive for celiac.
“Celiac disease is a serious condition that can lead to other serious conditions, including nutritional deficiencies, miscarriage, neurologic conditions and cancer. It’s important to get tested for celiac disease if you have symptoms suggestive of the disorder, or affected family members," says Dr. Laskin.
If you wish to be tested for celiac disease, start with your primary care doctor who can prescribe a blood test for celiac. If the results suggest celiac disease, your doctor can refer you to a gastroenterologist who can further diagnose your condition and what treatment approach will work best for you. For people diagnosed with celiac disease, a lifetime gluten-free diet is essential.
Main Line Health serves patients at hospitals and health centers throughout the western suburbs of Philadelphia. To schedule an appointment with a celiac specialist at Main Line Health, call 1.866.CALL.MLH (225.5654) or use our secure online appointment request form.
*name changed to protect privacy