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

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

By Amy Burkhart, MD, RD
Original post Nov. 2012-updated 2016


1. Continued gluten ingestioneating donuts

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 finger like projections in the intestinemilk 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

nutsMany 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 FODMAP intolerance, which is commonly seen in people with celiac disease and is implicated in the majority of cases of gluten sensitivity.  FODMAP intolerance can create persistent digestive symptoms such as bloating, gas and diarrhea even after gluten is eliminated. This is because many other foods beyond wheat contain FODMAP sugars.  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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Past columns by Dr. Burkhart:

April/May 2016: Reasons People Follow a Gluten Free Diet: 7 Types of Gluten Free Dieters 

March 2016: Ten Positive Aspects of a Celiac Disease Diagnosis

February 2016: Gluten Causes Keratosis Pilaris (a.k.a. “Chicken Skin”): Fact or Myth?

January 2016: Fingernail Changes in IBS,Gluten Disorders and Celiac Disease “A window to health”

December 2015: 20 Gluten-Free Gift Ideas: From Budget to Luxury, Sentimental to Practical & More

November 2015: Cold Sores, Canker Sores and Gluten

October 2015: Celiac Disease and Gluten Sensitivity Research: Snippets from ICDS 2015 (Part 2)

September 2015: Celiac and Gluten Sensitivity Research: Ten Snippets from ICDS 2015

July/August 2015: A New Home Test To Monitor Gluten Exposure

June 2015: Six Reasons to Test for Celiac Disease Before Starting a Gluten-Free Diet

May 2015: POTS, Celiac Disease and Gluten: An Undiscovered Connection?

February/March/April 2015: Arsenic in the Gluten-Free Diet: Facts and Tips

December 2014/ January 2015: The Microbiome and Celiac Disease: A Bacterial Connection

November 2014: Celiac disease and gluten sensitivity: The doctor-patient disconnect

October 2014: Should You Trust Gluten-Free Labels?

September 2014: Triggers for celiac disease: One possible answer

July/August 2014: Ten Tips for a Healthier Gluten-Free Diet

June 2014: Back Pain and Gluten

May 2014: Self-Diagnosis of Gluten Sensitivity: Four Alarming Trends

April 2014: Update on Restaurants and Gluten-Free Dining

March 2014: Histamine Intolerance: Could it be causing your symptoms?

February 2014: Celiac Disease and Non-Celiac Gluten Sensitivity (Reprinted with permission from Sonoma Medicine)

January 2014: Four Vitamin Toxicities on a Gluten-Free Diet

December 2013: Move Over Gluten-Free, Low FODMAP is Next

November 2013: SIBO, Gluten and IBS: What Is The Connection?

October 2013: Pesticides, Wheat and Gluten Sensitivity: What is the Connection?

September 2013: Is gluten really the culprit in gluten sensitivity?

August 2013: Clarifying the Gluten-Free Labeling Rule

June/July 2013: No such thing as Mild Celiac Disease

May 2013: Magnesium Deficiency

April 2013: Six Reasons to test for celiac disease before starting a gluten-free diet

March 2013: Why am I having migraines?

February 2013: What is fructose malabsorption?

January 2013: Educating doctors about celiac disease

December 2012: Are supplements to digest gluten safe and useful?

November 2012: Top 5 reasons for persistent symptoms after Going Gluten Free

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“I have been a patient of Dr. Amy Burkhart for several years. I suffer from Crohn’s disease and was having difficulty in my daily life. After visiting many doctors, all of whom were unable to help me, Dr. Burkhart took the time and patience to create a plan which brought me back to health. I still follow her plan to this day and have been living a normal healthy life. Dr. Burkhart listened to my symptoms along with listening to me, she took her time in preparing a plan which led me to the road for recovery. I cannot thank Dr. Burkhart enough, and I would recommend her to anyone.”

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