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Reasons a Gluten-Free Diet Can Make You Feel Worse

By Edited Oct 27, 2016 4 3

Why A Gluten-Free Diet Can Cause You to Feel Tired, Sick, or Worse

Reasons You Feel Worse Gluten Free

Celiac disease is a multisystem disorder. That makes it particularly difficult to diagnose as well as to treat. Triggered by gluten – one of the proteins found in wheat, barley, and rye – the majority of the damage occurs to the villi in the upper small intestine due to an improper autoimmune response. This damage makes it difficult for nutrients to be absorbed properly, which causes the symptoms and complications of the disease to become more complex and variable as it progresses.

Currently, a gluten-free diet is used to treat celiac disease and other forms of gluten sensitivity. However, removing all sources of gluten from the diet isn’t always easy, and a variety of other issues can prolong the inflammation, uncomfortable symptoms, and even cause damage itself. These additional problems can make you feel like you’re not getting better.

If you’ve recently started a gluten-free diet and feel tired or sick, here are some of the main reasons why a gluten-free diet can make you feel worse before you feel better.

Having False Expectations About the Time Required to Heal

False Expectations? Give Yourself Time to Heal

While giving up all foods that contain gluten helps to repair the damage, a false expectation about how quickly that happens might leave you confused. It all depends on the amount of damage the small intestine has suffered.

The length of time you went undiagnosed, how sensitive to gluten you are, your age, cross contamination issues at home or work, and other contributing factors all play a role in the time it takes to heal.

While most people begin feeling better within a few short weeks, for older folks it can literally take several years. If you were expecting to see a difference right away but didn’t, you might need to give it a little more time. Initially, the immune system continues to overreact and the body continues to struggle with fat malabsorption. It can take awhile your sysmptoms to calm down.

In addition, the small intestine isn’t a small tube. It’s closer to the size of a football field folded into many hair-like ripples. The amount of damaged area that now needs to heal will differ for each individual.

Hidden Gluten on Labels and Cross Contamination at Manufacturer

Reading Food Labels is Essential

When shifting to a gluten-free diet, the learning curve is large, so if you’ve been following your new eating plan for several weeks but still feel sick, the next thing to look at is the possibility of hidden gluten. Quite often, eating unsafe foods is the culprit. Reading food labels can be frustrating and tedious. It can be annoying to reread each food label before you buy something, but it’s essential because a manufacturer can change the ingredients at any time.

Soy sauce is a good example. Walmart’s store brand used to be marked “gluten free,” but suddenly, that gluten-free designation disappeared and wheat was listed in the ingredients. Walmart had changed suppliers without any announcement.

The FDA only requires manufacturers to list the top eight major allergens on the label, but these allergens do not have to be listed in the allergy warning statement:

  • wheat
  • milk
  • peanuts
  • soybeans
  • fish
  • tree nuts
  • eggs
  • shellfish

Make sure you’re checking both the list of ingredients and the allergy warning. Wheat has to be listed in one “or” the other.

Although wheat is one of the top eight major allergens, rye and barley are not. While it’s extremely rare to find rye hidden under any generic terms such as natural flavoring, it’s essential to know where you can find barley. Malt, malt flavoring, and malt vinegar are almost always made from barley. In the U.S., generic terms such as flavor, flavorings, and natural flavoring are almost always made from corn. However, they can be derived from barley.

In addition, many manufacturers run products made with gluten on the same lines as products made without gluten. While some of these manufacturers do have thorough cleaning practices to cut down on the risk of cross contamination with gluten, the label doesn’t have to tell you that. To take the necessary steps to protect yourself:

  • Stick to products that have “gluten free” clearly stated on the label. 
  • Contact the manufacturer listed on the label by phone, email, or letter. 
  • Check a company’s website for their allergy information.
  • Email the company for a list of their safe foods.
  • Stick to brands who will always declare added gluten on the label.

Gluten-free labeling laws are leaning towards defining gluten free as less than 20 ppm, but you might not be able to handle that, especially if you eat several servings of “less than 20 ppm” per day. Just because a product is marked “gluten free,” that doesn’t mean it’s safe for you. In addition, Canadian labeling laws are different then in the U.S., so make sure you understand your own country’s labeling laws, and be on the lookout for any sources of hidden gluten you might be getting.

Try Going Dairy Free or Sugar Free

Try Using Dairy-Free Products

A celiac disease diagnosis requires a biopsy to show at least flattened villi. When villi are damaged, they can no longer produce the enzymes needed to digest lactose and sugar.

A large percentage of celiac patients initially react to casein, one of the proteins found in dairy products. Some react to sugar. For most celiacs, this problem is temporary. When you stop eating gluten, the villi grow back. Until the villi heal, try eating dairy free and avoid as much sugar and high-fructose corn syrup as possible.

Since the tips of the villi produce the necessary enzymes, even a single gluten exposure can cause temporary dairy or sugar sensitivity. However, if you have a true casein allergy, you’ll need to follow a casein-free diet even after the villi have healed.

Opioid Addiction Produces Dairy and Wheat Withdrawal Symptoms

Wheat and dairy products both contain peptide chemicals called opioids. These chemicals have an opiate-like effect. They are not opiates, but react in similar ways. What wheat and dairy does is enhance the effect of neurotransmitters in the brain known as endorphins and creates feelings of euphoria. When you no longer eat them, you no longer experience that effect.

Opioids make certain foods addicting. If addicted, eliminating wheat and other offending foods can cause withdrawal symptoms such as exhaustion, headaches, weakness, nausea, and even anger. These withdrawal symptoms can make you feel worse on a gluten free diet, until your body clears out all of those allergens.

A Mixed Household Can Keep You Sick

Mixed Household Can Keep You Sick

Some celiacs are not as sensitive to gluten as others are, and can easily live in a mixed household where other family members continue to eat foods that contain gluten. They feel fine because it takes a larger amount of gluten to set off an autoimmune reaction than it does in those who are more sensitive. Not everyone can live in a mixed household. Even if you only eat gluten-free food, you still might not be safe.

If others are touching or eating foods with gluten, using personal-care products, hair products, or cleaning products that contain gluten, there is a strong potential for cross contamination. Many celiacs cannot heal in a mixed environment.



Potential for Cross Contamination

Cross contamination is a major problem within a mixed household. Gluten contamination can easily occur with dishes, counters, appliances, cupboards, and drawers. Kitchen rags and sponges are notorious for holding onto gluten. So are clothing, bedding, and towels that have been washed in fabric softener. Steam from an uncovered pot of pasta or the steam that escapes when the lid is taken off a pan can also be a problem. Even when extreme care is taken to keep kitchen utensils separate and your gluten-free foods safe, it’s extremely easy to make a mistake.

Flour Dust Stays In The Air For Hours

Flour dust stays airborne for hours and often days. Breadcrumbs get everywhere, and kitchen utensils often get mixed up or used for both gluten and gluten-free foods. In addition, keeping cross contamination out of other areas of the home isn’t simple either. Gluten can contaminate many places other than the kitchen. Any surface that comes in contact with the hands of a gluten-eating individual presents a possible area of concern. Some of these surfaces are:

  • kisses from a family member
  • steering wheel of your car
  • computer keyboard and printer
  • remote control or buttons on electronic items
  • light switches
  • sink faucets and handles
  • books and magazines
  • telephone and phonebook
  • shared pens and pencils

For those who are extra sensitive to gluten, it can be almost impossible to keep contamination out of a mixed household. While many begin their gluten-free journey attempting to share a home with others who continue eating gluten, most people find healing to be impossible within such an environment.

Nutritional Deficiencies Make You Tired

Nutritional Deficiencies Make You Tired

Chronic fatigue is a major complaint among many celiacs. Most of the time, exhaustion comes from malnutrition or the body’s efforts to heal. When the intestinal walls inflame and the villi flatten, the body cannot absorb nutrients properly and malnutrition results. To mount an autoimmune reaction takes extra energy, and the healing process requires extra rest and sleep.

If you’re strictly following a gluten-free diet, avoiding hidden gluten, and have addressed all avenues of possible cross contamination – yet still feel tired or sick – the next thing to check out is your vitamin and mineral levels. The villi are responsible for absorbing many nutrients, but inflammation interferes with that role. The vitamins and minerals most likely to be deficient in those with celiac disease are:

  • CoQ10
  • iron
  • folic acid (folate)
  • vitamin B-12
  • calcium
  • magnesium
  • vitamin D

Both iron and folate deficiency cause anemia, but without a blood test, you can’t know which of these nutrients are low. The same goes for all other vitamins and minerals. The best option is to make an appointment with your physician, so you can be tested for each vitamin and mineral. That way, your physician can set up an accurate supplementation program.

Food Allergies and Sensitivities Cause Chronic Fatigue

In a late September 2006 newsletter, The IBS Treatment Center wrote that “one of the primary causes of fatigue is eating food to which you are allergic.” In fact, fatigue is “one of the most common symptoms of a food allergy and may be your only symptom.” It’s extremely common for those on a gluten-free diet to discover they have additional food allergies and sensitivities that the gluten was masking. Once the gluten is no longer there, additional sensitivities can come forth.

Allergies and Sensitivities Keep You Feeling Ill

The most common additional food allergy and sensitivities seen in those with celiac disease are:

  • lactose intolerance
  • dairy sensitivity
  • casein allergies
  • fructose intolerance
  • sugar sensitivity
  • soy allergies
  • corn intolerance

You can be allergic or sensitive to any food, drink, or chemical. It doesn’t have to be on this list. In fact, research is beginning to point to gastrointestinal issues such as leaky gut syndrome as being a strong cause for additional food intolerances other than gluten. Sometimes the problem is temporary and exists only until the villi grow back or the intestine heals, but other times the food sensitivity or allergy is permanent.

While various forms of food allergy tests are available, not all food intolerance is true allergies. For those with food sensitivities rather than a true allergy, an elimination diet is necessary to find the offender.

Health Problems Associated With Celiac Disease

By the time you’re diagnosed with celiac disease, many people often have additional health problems that will contribute to how you feel. This is partly because gluten can adversely affect more than just the small intestines, and partly because those with one autoimmune condition generally tend to develop more. Some of the most common conditions associated with celiac disease or gluten sensitivity are:

Feeling exhausted or sick can result as the body seeks to rest when recovering from an autoimmune attack or inflammatory response. However, other health issues and autoimmune diseases also need to be considered when wondering why your gluten-free diet might not be working. A gluten-free diet cannot heal vitamin deficiencies, food sensitivities or ongoing gluten contamination issues. Neither can it heal the permanent damage that accompanies neurological problems. But sometimes, all you need is time.

Good Nutritional Practices Needed to Heal

It will take more than a week or two to heal from all of the years of damage. In fact, for those in their 50s or more, it can literally take years for the body to heal – if it ever does. That can make it difficult to cope. However, additional health conditions and good nutritional practices need to be addressed in order to feel well. Leaky gut, high levels of inflammation, bacteria overgrowth, and poor nutrition can persist despite a gluten-free diet. While time and changes in circumstance can certainly correct some of these problems, a gluten-free diet isn’t always a single solution.



Dec 13, 2012 5:10pm
lol dude. My friend is a celiac. :\ Gluten kills them ..
Dec 14, 2012 6:03pm
Yes, gluten can be deadly if those of us with celiac disease do not strictly adhere to a gluten-free diet, but many people (including me) initially get worse. The article explains WHY that happens. Thanks for your comment.
Jun 26, 2014 2:29am
This is an outstanding and well researched article. I have shared it on our Nature Fresh Facebook page because it can help people who are confused - especially about the opioid effects of food that is harmful to them. I have also pinned it to my: Fun with gluten-free food board. Love it!
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