What Are the First Signs and Symptoms of Being Gluten Intolerant?

Non-celiac gluten intolerance causes pain, fatigue, or nervous system issues that stem from eating gluten. The first signs and symptoms of NCGS include bloating, brain fog, depression and anxiety.

Ten years ago, many people did not know what gluten was or what foods this sticky, gelatinous substance was in. Now, it’s common to see gluten-free pizzas on supermarket shelves or get a request to cater to a friend’s gluten-exclusionary, dietary needs at a dinner party. 

If you’re sorting out your own digestive symptoms, you might not understand the difference between this condition and other gluten-related illnesses. If you’re considering a gluten-free diet for yourself, though, start by asking the following questions: 

Do your experiences line up with common gluten intolerance symptoms? 

Have you been tested for celiac disease, or does it (or other autoimmune conditions) run in your family? 

How careful do you really need to be when eating at restaurants with gluten intolerance symptoms? 

Learn about this condition below and determine whether trying a gluten-free diet would be a good idea or not.

Celiac disease is often difficult to detect and diagnose, but the disease process itself is pretty straightforward. A person with celiac disease has an abnormal immune system response to gluten proteins found in wheat, rye, and barley grains. It’s not a true wheat allergy, and you probably won’t go into anaphylactic shock if you have celiac disease and you eat gluten. Instead, it causes your immune system to attack your body. 

If you have celiac disease, your immune system damages the lining of your small intestine. When it happens over a long period, your small intestine isn’t able to absorb nutrients from food, which means you can suffer from nutrient deficiencies, weight loss, and a host of other serious issues. While this disease can’t be cured, the damage to the small intestine can be reversed if you quit eating gluten.

Non-celiac gluten intolerance or sensitivity (NCGS) isn’t as straightforward to diagnose and adopting a gluten-free diet before you’re sure what condition you have isn’t always a good idea. Researchers aren’t exactly sure what causes this condition, but many experts agree that gluten is a real concern for some people without celiac disease — but the gluten might not trigger the immune system in the same way as in celiac disease. Patients with non-celiac gluten intolerance (or gluten sensitivity) tend to report similar symptoms:

• Digestive symptoms like bloating, diarrhea, or constipation
• Brain fog
• Depression and anxiety
• Muscle and joint pain
• Fatigue

Around 1% of people in the United States have a celiac disease diagnosis, but many more are probably undiagnosed. Around 6% of the U.S. population lives with non-celiac gluten intolerance. At this point, NCGS is difficult to diagnose, though, so the numbers could be misleading — there could be more or fewer people with this condition than these statistics describe.

Diagnosis of gluten intolerance symptoms can be difficult when the patient tests negative for celiac disease. Some people have a negative screening blood test for celiac, but their small intestines show signs of damage. Others don’t seem to have any signs of gastrointestinal problems, but they deal with pain, fatigue, or nervous system issues that stem from eating gluten. To complicate things further, many people self-diagnose this condition — due to the popularity of the gluten-free diet — before their screening tests.

A wheat allergy is an immune system reaction to a protein in wheat. This protein causes the immune system to react as if it was being invaded. If you’re having an allergic reaction to wheat, the symptoms usually aren’t as vague as those of non-celiac gluten intolerance, and it’s usually easier to pinpoint the cause of this condition. You might notice the following symptoms during an allergic reaction:

• Hives, itching, and rashes
• Allergy symptoms like runny nose and sneezing
• Asthma attacks
• Stomach problems like cramps, diarrhea, and vomiting

Fermentable oligosaccharides, disaccharides, monosaccharides, and polyols (FODMAPs) are simple sugars that the small intestine doesn’t absorb very well. FODMAPs are often referred to in the context of the low-FODMAP diet. Foods that are high in FODMAPS are common culprits of stomach symptoms like bloating, constipation, and diarrhea — similar symptoms to NGCS. 

People often use this diet to get stomach symptoms under control and rule out foods that they suspect are bothering them. Wheat is particularly high in FODMAPS, and some researchers think it may be a cause of NGCS for some people. If your symptoms of gluten intolerance are mainly digestive-related and you’ve ruled out other medical conditions that may be causing them, this diet could help you determine which foods are affecting you.

Your doctor will perform a physical exam, ask you questions about symptoms, and they might ask you to undergo blood testing for celiac disease, wheat allergy, and other related conditions. If your blood tests are inconclusive but you have several symptoms of celiac disease, your doctor might schedule an endoscopy, which is where a long tube is inserted through your throat and into your small intestine to take a tiny sample of tissue. 

If you struggle with skin symptoms and blistering rashes, your doctor or dermatologist might suspect that you have dermatitis herpetiformis. In this case, you might be asked for a skin biopsy to confirm or rule this out. Your doctor might provide the option of genetic testing that detects the possibility of you developing these conditions or not. If you don’t have any abnormal genes associated with developing gluten-related conditions, you may have NGCS. 

There isn’t any one test that doctors use to diagnose NCGS, and at this point, it’s mostly a diagnosis of exclusion. This means that once you’ve ruled out celiac disease, dermatitis herpetiformis, wheat allergy, irritable bowel syndrome, and FODMAP sensitivity, you might be able to claim the non-celiac gluten intolerance label. 

The necessity of complete avoidance depends upon how bad your symptoms are and whether your doctor has found a cause for them or not. For example, if you know you don’t have celiac disease or a wheat allergy but you also get a stomachache every time you eat wheat bread or pizza, you will probably feel better avoiding these products. You can rest assured knowing that gluten is likely not damaging your body, but this doesn’t mean it isn’t causing uncomfortable or even debilitating symptoms. 

With your doctor’s go-ahead, you might want to experiment to see how much gluten you can tolerate without experiencing gluten intolerance symptoms. For example, is the small amount of wheat in soy sauce enough to bother you? Are you able to eat a slice of pizza, or does even a bite send you running to the bathroom? Speaking with your doctor or nutritionist can help you gain perspective about how severe your gluten intolerance symptoms are and point you in the right direction when it comes to how much, if any, you should be eating.

Gluten-free diets might sound healthy, but they can contain as much processed food and poor nutrition as any other diet. Whether you’re considering changing your diet to lose weight, become healthier overall, or alleviate the symptoms of a health condition, read through the following points before you begin a new eating pattern.

Rule out celiac disease first

If you have significant health problems when you eat gluten — gastrointestinal or otherwise — it’s important to ask a doctor about screening you for celiac disease before you change your diet. The blood tests commonly used to screen for celiac disease won’t pick up a problem if you’ve already been on a gluten-free diet for a while, so it’s important to undergo testing while you’re still eating a gluten-containing diet, if possible. 

Dermatitis herpetiformis, an itchy and painful skin condition that looks like small, blistering bumps, is also linked to gluten ingestion. If you have symptoms like this that flare up when you eat wheat products or other gluten-containing grains, it’s important to mention them during your appointment as well.

Remember that not all gluten-free foods are healthy

After you and your doctor have ruled out celiac disease, it’s still a good idea to consider the nutritional value of your gluten-free diet. Because of the recent popularity of gluten-free diets, there are many gluten-free junk foods that are just as unhealthy as their gluten-containing counterparts. 

Be careful of overly processed products and remember that refined products commonly used in gluten-free formulations like white rice, potato flour, and tapioca starch may not be good for your blood sugar when eaten all the time.

If tests conclude that you do not have celiac disease, you may be wary of eating gluten if it causes noticeable symptoms for your digestive system or any other part of your body. Gluten-free diets can be nutritious, and if you feel better eating this way, there’s no harm in it as long as you eat a carefully planned and balanced diet. Speak to your doctor to determine whether you need to be tested for celiac or other conditions that involve gluten sensitivity before adopting a gluten-free diet on your own.