Am I gluten intolerant? That’s a question Dr. A hears a lot. No wonder! Gluten-free diets are all the rage right now, but some people jump on the bandwagon and go gluten free without really knowing if a gluten-free diet is the best choice for them.
We’re all a little different from a genetic standpoint. While a gluten-free diet is the only safe choice for someone with celiac disease, whether it’s right for you depends on, well, YOU.
Our goal in this post is to give you a better idea of whether you’re likely to benefit from a diet free of gluten and how to find out whether such a diet is right for you.
What is Gluten?
You hear the term “gluten” tossed around a lot but if you ask someone what it is, they can’t always give you a clear answer.
Gluten is one of several proteins found in wheat, rye, barley, and triticale. The two main gluten proteins are called glutenin and gliadin.
Ever notice how pizza dough is so flexible and “stretchy?” You can pull it in any direction and it doesn’t fall apart. It’s the gluten in pizza dough that keeps it intact even when you toss it in the air, pizza maker style. Same with bread dough.
You find gluten in a number of baked goods and packaged food products. Because gluten is so common in packaged foods, it once was ultra-challenging to follow a gluten-free diet. These days, there’s a growing number of gluten-free packaged products that are supposed to make it easier.
Unfortunately, most gluten-free packaged foods are not all that healthy. They’re usually made with potato flour or some other flour that raises your blood sugar rapidly. The best gluten-free diets are those built around whole foods. Fruits and vegetables are naturally gluten-free.
BTW, you’re probably wondering what triticale is. It’s a hybrid grain made by crossing rye with wheat.
Who Benefits from a Gluten-Free Diet?
Am I gluten intolerant? At one time, the consensus was only people with “true” gluten sensitivity, the disease we call celiac disease benefit from a diet free of gluten. People with celiac disease have an immune system that “overreacts” to gluten, actually overreacting is putting it mildly.
When confronted with gluten, your immune system releases a torrent of immune cells to help obliterate it, almost like it’s responding to a three-alarm fire. In turn, this leads to inflammation that damages the small intestinal lining.
Some foods you can consume a little of and get by with it. For example, if you have diabetes, you can eat a little sugar on occasion and it won’t do great harm. Not so if you have celiac disease. If you consume even a tiny amount of gluten, it fuels the inflammation and damages the thin boundary and channels that separate your small intestines from the rest of your body.
When these channels are damaged, they open up and proteins from your food can leak out of your small intestines and enter your bloodstream. Your immune system sees these proteins as foreign invaders and reacts against them by launching an inflammatory response.
The inflammation associated with celiac disease also damages the intestinal lining enough that some nutrients aren’t absorbed. If you have celiac disease, you may not absorb vitamin A, B-vitamins, vitamin E, vitamin K, iron, zinc, or magnesium as well as you should.
Common Intestinal Symptoms People with Celiac Disease Experience:
- Abdominal bloating
- Abdominal pain and cramping
- Foul-smelling stools that float
But because celiac disease causes such widespread intestinal damage AND activates the immune system, you can experience more generalized symptoms when you have celiac disease including:
- Nutrient deficiencies
- Mouth sores
- Brain fog
- Joint pain or swelling
- Tingling in the hands or feet
- Abnormal skin lesions
This is by no means a comprehensive list but it does show you that celiac disease isn’t just a disease of the small intestinal tract. It can impact other areas of your body as well and even our mental health. Below you’ll find an infographic covering some of the many ways celiac can masquerade.
If you don’t treat celiac disease, you also have a higher risk for a certain type of intestinal malignancy called lymphoma. Fortunately, strictly following a gluten-free diet lowers your risk for intestinal lymphoma to that of the general population.
As you can see, people with celiac disease have to avoid gluten at all costs – or risk ongoing inflammation, nutrient loss, and, potentially, intestinal cancer. About one in 100 people have celiac disease, some of whom don’t know it.
What if you have some of the symptoms of celiac disease yet you test negative for celiac disease?
Up to 10% of the population is gluten sensitive or gluten intolerant. If you fall into this category, you don’t experience the typical immune inflammatory response that celiac sufferers experience but your intestines don’t tolerate foods containing gluten.
If you have non-celiac gluten intolerance, you may or may not have the classic intestinal symptoms of bloating, nausea, diarrhea etc. but instead have vague, ill-defined symptoms like joint pain or brain fog. Starting a gluten-free diet, in this case, should lead to resolution of the symptoms.
Only recently have doctors began to acknowledge that non-celiac gluten intolerance exists. So, if you think you have it, make sure your doctor is open-minded and up-to-date.
Testing for Celiac Disease
The most common test for celiac disease is one that measures a specific type of IgA antibody. This test is called the tTG-IgA test.
There are several other tests that check for other IgA antibodies that are often elevated in people with celiac disease. Unfortunately, none of these tests are 100% accurate. The “gold standard” test for celiac disease is an intestinal biopsy, a procedure that carries with it a small amount of risk.
An intestinal biopsy involves passing a fiber optic camera through your mouth, under sedation, down into your small intestine. The camera looks for damage to the small intestinal tract and flattening of the intestinal folds that help your body absorb nutrients. Such flattening of the folds is characteristic of celiac disease.
Most people won’t need an intestinal biopsy. Though not 100% accurate, blood tests can give you a pretty good idea whether you have celiac disease.
Since celiac disease is linked with inflammation and immune system overactivity, we recommend testing if you have any type of autoimmune disease. Because there’s a genetic component to celiac disease, if you have a strong family history, especially if you have digestive issues, you should get tested too.
Since there’s a genetic component to celiac disease, you should also get celiac disease testing if you have a first-degree relative with the disease.
Don’t assume that because the symptoms came on later in life that you don’t have celiac disease. The most common decades in which people are diagnosed with celiac is the fourth and fifth decades. Plus, we think there are people out there with celiac disease who have no obvious digestive symptoms.
Explore your family history and if you have close relatives with the disease – get tested.
Non-Celiac Gluten Intolerance
Am I gluten intolerant? Gluten intolerance is a different animal from celiac disease. You NEED to know whether you have celiac disease because celiac is a more serious condition than gluten intolerance and one that you have to monitor closely.
When you have celiac disease, you’re at risk for other autoimmune problems, nutritional deficiencies, and osteoporosis. You also have to be extremely strict with your diet.
Despite the fact that non-celiac gluten intolerance is less dangerous, it, too, can cause issues. At the very least, it can create unpleasant digestive symptoms. There’s also some evidence linking it with other health problems like migraines, irritable bowel syndrome, and mood disorders.
Some evidence suggests that over time non-celiac gluten sensitivity can damage small channels in the small intestines and lead to a “leaky gut,” a relatively new term for an intestinal tract that isn’t healthy and can send food components outside your intestinal tract into your bloodstream.
So, how do you find out if you have it? Unlike celiac disease, there isn’t a blood test that can tell you whether you have non-celiac gluten intolerance. If you suspect you’re having issues with gluten, you might be tempted to try a gluten-free diet to see if the symptoms improve. Don’t do it just yet.
Get tested for celiac disease first – to rule it out celiac, the more serious form of gluten intolerance. If you start a gluten-free diet before getting tested, the test may come back falsely negative and you’ll never know for sure.
Am I Gluten Intolerant: Who Should Get Celiac Testing?
We If you have any of the intestinal symptoms above, you need to be tested but these, in our opinion, are other indications that you need testing:
- You have an autoimmune disease of any kind.
- You have unexplained fatigue, brain fog, lack of energy, or symptoms of depression. (You should also get a vitamin D level checked too).
- You have a family history of celiac disease or other autoimmune diseases,
- You have a variety of food intolerances.
- You have chronic, acid reflux.
- You have frequent, chronic migraine headaches.
- You have irritable bowel syndrome.
- You have unexplained neurological symptoms like tingling in the feet and hands. (You should also get a vitamin B12 level checked too)
- You have osteoporosis before the age of 60.
A special note about acid reflux. If you have acid reflux symptoms, consider getting tested. Atlanta-based gastroenterologist and celiac expert Dr. Cynthia Rudert believes celiac disease and non-celiac gluten intolerance sometimes masquerades as acid reflux. Here’s a quote from her:
“I’ve seen countless individuals who have a total resolution of their reflux once they go gluten-free,” she says. “Others on acid suppression medications are able to taper off and eventually discontinue the medicines.”
A small number of people with celiac disease have NO intestinal symptoms and, instead, manifest with symptoms unrelated to the digestive tract like osteoporosis, infertility, or anemia. That’s what makes it so tricky.
Let’s assume you get tested and the results are negative. If the suspicion that you have it is still high, your doctor may recommend an intestinal biopsy. Remember, blood testing isn’t 100%, especially if you were avoiding gluten before the test. You can discuss the pros and cons of getting a biopsy with your doctor.
Once you’ve ruled out celiac disease, but you still think you have gluten issues, try a gluten-free diet and see if your symptoms improve. This is called an elimination diet and if you do it properly by avoiding all gluten it gives you a pretty good idea of whether you’re gluten intolerant. If your symptoms get better, you likely have gluten intolerance that’s NOT related to celiac disease and will need to avoid it.
Going on a gluten-free diet for even a few weeks as a test is simple but not easy. You’ll need to strictly avoid ALL forms of gluten for 3 weeks. It takes commitment since gluten is in many packaged foods, even ones you don’t expect, like condiments. Here’s a helpful resource that’ll help you know what not to eat:
Could It Be a Food Allergy Instead?
If you feel better on a gluten-free diet and your symptoms improve, you can assume you’re gluten sensitive and start a gluten-free diet. We won’t go into the nitty-gritty on doing that but there are excellent resources that can help you out including the Celiac Disease Foundation.
What if your digestive symptoms STILL don’t improve? Hopefully, you’ve seen your doctor and ruled out the serious stuff.
If you’re not better after ditching gluten, you may have another type of food allergy or sensitivity, the most common being eggs, milk, or soy. At this point, you might consider allergy testing or experimenting with your diet by eliminating “suspicious” foods for 3 weeks and see what happens.
What about Wheat?
Wheat is one of the grains to avoid if you have celiac disease or non-celiac gluten intolerance, but some doctors and health gurus believe wheat is a problem independent of the gluten it contains. We won’t go into detail on this in this post. Instead, we’ll discuss it thoroughly in a future one.
Suffice it to say, the wheat we have today isn’t the same as wheat 100 years ago. It’s been specially bred to yield a version of what that has a different carbohydrate molecule called amylopectin A.
Unlike the amylopectin in wheat from the past, enzymes in your mouth and small intestine rapidly break this amylopectin down into simple sugars, leading to a rapid rise in blood sugar.
One cardiologist, in particular, Dr. William Davis M.D., crusades against eating modern wheat, not only because it contains gluten but because it contains amylopectin A. He’s the author of the best-selling book Wheat Belly.
Another author, Dr. David Perlmutter M.D., a neurologist, wrote another eye-opening book called Grain Brain. We’ll go into more detail and share our thoughts on what these authors are saying and whether there’s evidence to support it in a future post.
If you have celiac disease or non-celiac gluten intolerance, here are some helpful resources:
Hope this helps! Have you ever tried a gluten-free diet? How did you feel when you eliminated gluten from your diet?