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Top 5 Reasons for Persistent Symptoms after “Going Gluten-Free”

Top 5 Reasons for Persistent Symptoms after “Going Gluten-Free”

By Amy Burkhart, MD, RD
November 2012

1. Continued gluten ingestion
This really should be number 1, 2 and 3, since it is by far the leading cause of ongoing symptoms in patients starting a gluten-free diet. The intake of gluten may be intentional, for those patients mistakenly assuming “a little won’t hurt,” or inadvertent as the diet can be challenging at the start. Those unintentional ingestions may occur for a variety of reasons, such as cross contamination from toasters, cookware or cutting boards. They may happen due to well meaning “gluten eating” family members who aren’t familiar with how to avoid cross contamination. Or, they may be from hidden gluten in products, cross contamination from dining out or misreading or misunderstanding labels.

There are several other reasons for accidental gluten ingestion and it often requires being a bit of a detective. This may best be accomplished with the help of a dietitian or health care professional trained in gluten-free diets if the answer is not easily uncovered on your own.

2. Lactose Intolerance
Lactose is a sugar found in milk. Lactase is an enzyme that is used to digest the sugar. The enzyme is found on the very tip of the villi of the small intestine. Villi are fingerlike projections in the intestine where absorption occurs. These villi are damaged in newly diagnosed celiac patients and possibly in gluten sensitivity. When this happens, the enzyme is “washed away” and is not there to digest the lactose (milk sugar).

This creates symptoms of painful gas, bloating and diarrhea. Often, after some time on a gluten-free diet (it may be months) the enzyme comes back as the villi repair. Dairy products can once again be introduced into the diet. Sometimes, however, this doesn’t happen and patients are forced to use a lactase supplement or avoid dairy all together. Some patients do find they can tolerate products such as yogurt or kefir in which the sugar (lactose) is “predigested.”

3. Nutrient Deficiencies
Often, at the time of diagnosis patients have been ill for a very long time. Due to this delay in diagnosis, many patients have a lengthy period of malabsorption of vitamins and minerals because the intestines have not been working properly under the constant barrage of gluten ingestion. Many practitioners fail to test for common nutrient deficiencies associated with celiac disease or gluten sensitivity. The vitamins and minerals most commonly deficient are below, along with some of the common symptoms seen with these deficiencies. This list is by no means comprehensive or exclusive.

Iron- Fatigue, cold intolerance (feels excessively cold with mild decreases in temperature), poor appetite, pale skin, headaches, dizziness, shortness of breath
Vitamin D- These symptoms can be nonspecific and vague: bone pain, weakness, depression, fatigue, poor concentration and joint pain.
Folate- Fatigue, headache, anemia, palpitations, depression, difficulty concentrating, memory problems, sore tongue, gastrointestinal symptoms such as diarrhea, nausea, vomiting
Vitamin B12- Anemia, weakness, fatigue, pale skin, sore tongue, balance problems, tingling in fingers or toes, mood changes, depression
Magnesium- Fatigue, constipation, insomnia, muscle spasms or twitches, anxiety, hyperactivity, headaches

4. Other Food Sensitivities or Intolerances
Many patients experience ongoing symptoms due to other foods they are eating. They may have a myriad of symptoms due to other food intolerances that disappear when that food is eliminated from the gluten-free diet. These symptoms can range from fatigue, “brain fog,” joint pains, rashes, digestive symptoms, to many others. Common players in this arena are dairy, soy, eggs, nuts, nightshades, and corn, but any food can cause symptoms in a particular patients.

Again, it requires a bit of detective work on the part of the patient and practitioner to figure out what the actual culprit or culprits are, but the results can be quite rapid and dramatic once the instigating foods are found. Of particular note in this category is fructose malabsorption, which is commonly seen in people with celiac disease and gluten sensitivity or sensitivity. Fructose malabsorption can create persistent digestive symptoms such as bloating, gas and diarrhea. Talk to your doctor further about how to diagnose and treat other food sensitivities. I also will be writing about this topic in a future column.

5. Small Intestinal Bacterial Overgrowth (SIBO)
SIBO is an overgrowth of bacteria in the small intestine that wreaks havoc on the digestive tract and on a person’s well-being. SIBO can occur because of poor motility in the intestine, allowing bacteria from the large intestine to migrate to the small intestine. It may also happen as a result of low stomach acid (such as from chronic proton pump inhibitor use) or poor pancreatic enzyme function.

If SIBO goes unchecked, it can cause malabsorption of nutrients in addition to symptoms such as gas, bloating, diarrhea and discomfort. Symptoms often worsen after ingestion of carbohydrates and can be progressive throughout the day. Diagnosis is done by a hydrogen breath test, although some practitioners will treat based on clinical picture alone. Treatment varies from patient to patient, but includes dietary manipulation, probiotics, supplements and often antibiotics.

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“I have always been a very active person and enjoyed a full life, however, I had various health problems for more than 11 years that began taking their toll on my body. I sought help from many health care professionals during that time. I went from Medical Doctors (including a Gastroenterologist), Osteopaths, Acupuncturists, Chiropractors, Physical Therapists to Massage Therapist’s and no one was able to provide me with a correct diagnosis. Nor did they go beyond treating my symptoms and search for the etiology of my illnesses. It wasn’t until I met Dr. Amy Burkhart that my road to wellness began. 5 years ago, I was diagnosed with Celiac Disease after Dr. Burkhart suggested I be tested. I was told by the Gastroenterologist to adopt a gluten free diet and offered an appointment with a dietician. For me, this wasn’t sufficient. I went on a strict gluten free diet and my symptoms and health improved, but I still wasn’t well. I had developed multiple food sensitivities from years of damaging my gut with gluten. Dr. Burkhart put together a comprehensive individualized program that put me on the path to wellness. She helped me discover my food sensitivities, replenish lost vitamins and minerals with high quality supplements and was available to see me through this process. Through her care, I became healthy again, resumed and surpassed all physical activities I had enjoyed many years earlier.”

8 months ago

Stone Brewing company Stone Brewing - Napa opened recently in Napa in an historic building adjacent to the river. A great venue to enjoy life! The gluten free menu options are coming (per the manager ) but please visit and inquire about GF options. The more people who show interest and discuss cross contamination the more likely they are to get it right! Wine is available. Maybe they will even consider a GF beer! . ... See MoreSee Less