I’ve always been slightly baffled by the relationship between gluten-intolerance and Celiac Disease. I’ve had my son tested for Celiac Disease at least three times. All tests came back negative (meaning he didn’t have Celiac Disease – he does have Crohn’s). Yet recently he accidentally ate some Rudi’s wheat rolls instead of the Udi’s gluten-free rolls. What a disaster – he was so sick that he couldn’t eat for 3 days.
So to clear up a few questions I’ve had in the past, Dr. Sage Wheeler answered some of my gluten-related questions for Comfy Belly readers to listen in on. And at the end of the interview is a recipe for creamy macaroni salad (gluten-free, of course).
I think many Comfy Belly readers are aware of what Celiac Disease is, but could you just briefly describe what it is?
Celiac Disease is a condition in which the lining of the intestines are damaged by an immune response to ingested gluten. Basically, the gluten is flagged as a foreign invader and your body creates antibodies to it. These antibodies get confused and start attacking the lining of the intestines. It is a classic case of devastating friendly fire. This damage can cause malabsorption, pain, gas, bloating, and increase the individual’s risk of getting other diseases such as autoimmune conditions and psychiatric disorders such as schizophrenia.
Is Celiac disease and Crohn’s related in any way? I’m aware that both Celiac Disease and Crohn’s are considered considered autoimmune conditions, but are they related in any way? And can a person have both conditions?
Celiac Disease and Crohn’s are related in that they both are diseases of the small intestine that can lead to malabsorption and predispose that person to other conditions. They are different in that they have completely separate causes – Celiac is a reaction to gluten, Crohn’s is a reaction to certain bacteria. However, they are very commonly found together. Research in the journal Inflammatory Bowel Disease (2005) found that the majority of people (55%) with Crohn’s also have Celiac Disease. There is also an increased incidence of Crohn’s in people with Celiac Disease. It is very important that people with Crohn’s follow a gluten-free diet. Regardless of what any test results say, I am not comfortable with any patient with IBD eating gluten.
What’s the best way to determine if you have Celiac Disease?
Celiac Disease is diagnosed by two blood tests, anti-endomysial antibody and tissue transglutaminase, followed by an endoscopic biopsy of the small bowel tissue. There is no other valid way to diagnose Celiac Disease. However, if you are sick, and not eating gluten makes you better, then stop eating gluten! You don’t need a doctor to name your disease. We all are capable of observation, forming hypothesis, and experimentation. Often, I hear frustrated people complaining that their doctor won’t order a Celiac Disease test, but they are sure gluten is the cause of their discomfort. So they carry on, going through short gluten-free phases, then back to eating gluten. These people already have their diagnosis and should do what’s best for their bodies, which is to stop eating gluten permanently.
Do some folks have a false negative to Celiac testing? Is it reliable?
Yes, they are very reliable, but you must be eating gluten in order for the diagnosis to be made. If you are off gluten for more than a week, it will throw the test off. That’s the great thing about Celiac Disease, it goes away relatively quickly when gluten is removed from the diet. Crohn’s is much more difficult to treat. So, if you are gluten-free, and really want that test done, you have to eat at least 3 pieces of bread a day for at least 3 weeks. If you are doing that, those three tests combined are more than 95% reliable for diagnosing Celiac Disease. However, if you notice that gluten causes problem for you, but these tests are negative, you likely have a gluten sensitivity.
What is a gluten sensitivity, and how does a person get tested for it?
A gluten sensitivity is an inflammatory reaction to gluten, without the targeted tissue destruction found in Celiac Disease. In the case of gluten sensitivity, there is not a gold-standard blood test. There is only ALCAT or ELISA testing, which we have discussed before. As I said then, they are a good reference for those with bowel problems, but the gold standard is an elimination and re-challenge diet during which the suspected foods are removed from the diet, symptoms improve, and then the foods are reintroduced one at a time. During the re-challenge you watch for a reoccurrence of symptoms and correlate it with gluten or whatever food you are challenging.
I should also clarify the three different types of generalized food reactions here. There are sensitivities, intolerances, and allergies. Then there are separate disease states. Crohn’s and Celiac are not allergies, they are immune disorders. A wheat allergy (anaphylaxis), a wheat intolerance (just short term diarrhea within 30-60 minutes of eating), wheat sensitivity (delayed systemic inflammation), and Celiac are all different things with different etiologies and treatment.
Can a person grow out of, or lose their gluten sensitivity at some point?
Yes, it does happen rarely. Some people are only gluten sensitive when they are ill or very stressed. It is important to get to know your body, be in tune with it, then you can better manage your health without special tests and doctor visits.
As you know, my son was tested for Celiac Disease several times during the past 10 years, and each time his Celiac panel came back as negative for this condition. However, when he was food-sensitivity tested by ALCAT, he came back as highly reactive to Gliadin, which is a part of gluten. What does this imply, and why is there a distinction made if he still can’t eat foods containing gluten?
There are few factors that could have interfered with a Celiac diagnosis, the most likely is immunosuppressive drugs or a low gluten diet. Alternatively, he simply does not have Celiac antibodies, but is gluten sensitive. His body does not like gliadin, it releases inflammatory mediators when it encounters it, but it does not create anti-endomysial antibodies as occurs in Celiac.
Gliadin is the reactive molecule within gluten. It is really gliadin that causes the damage in Celiac Disease. Gluten is composed of glutelin and gliadin. Gliadin is released when gluten is digested. This is where the problems occurs. Gliadin looks a lot like other tissues in our body. This molecular mimicry is what confuses the immune system and causes it to attack. In reality, there are probably very few people who are gluten sensitive per se, most people are more accurately described as gliadin sensitive. It is just semantics, really. Wheat, gluten, and gliadin are like nesting dolls…It is like saying the you are allergic to peanuts. Technically, peanuts always come in a shell, but everyone knows that we are speaking of the legume inside. You may be able to touch or even lick that shell, but if you eat the peanut there will be problems. Gliadin is the nut within the shell of gluten.
Finally, it is important to note that Celiac Disease can manifest in many ways, not just as a bowel disease. Your gut my feel fine, but you may have depression, anxiety, joint pain, or any other symptom that could be caused by a nutrient deficiency. If you have poor health, chronic health issues, or mental illness, talk to your doctor about Celiac Disease or, if you don’t have health care, try a gluten-free diet on your own. You may be surprised by how you feel.
About Dr. Sage Wheeler
Dr. Sage Wheeler is a graduate of Bastyr University, the world leader in natural health sciences. After graduation, Dr. Wheeler was the recipient of the prestigious ITI-STAIR residency. During this additional one year of training and practical clinical experience he practiced under the mentorship of a conventional medical doctor as well as an experienced naturopathic doctor. This opportunity has given him a uniquely integrated perspective and way of practice.
Prior to attending Bastyr, Dr. Wheeler was afflicted with a genetic bowel condition that caused severe chronic pain which, for 5 years, was misdiagnosed as IBS. This experience led him to seek further training in functional gastroenterology as part of his medical training, and gives him a unique ability to genuinely sympathize with his IBD patients.
Dr. Wheeler enjoys frequently attending conferences and seminars to continually improve his practice and offer cutting edge knowledge and treatments to his patients. He is a member of the Institute of Functional Medicine, American Association of Naturopathic Physicians, and candidate of the Naturopathic Board of Functional Gastroenterology.
While Dr. Wheeler can’t answer your questions here, he is available for consultation. Visit his website, where you can find supplements, office hours, and more information on his growing practice.
Use this link to find a naturopath near you.
Creamy Macaroni Salad
- about 4 cups of cooked gluten-free pasta (I used Tinkyada’s macaroni pasta)
- 1 red pepper, diced into small pieces
- 2 stalks of celery, diced into small pieces
- 1 medium-size dill pickle, diced into small pieces
- 1 cup of mayonnaise
- 1 teaspoon of mustard (I like Dijon)
- 1 teaspoon of apple cider vinegar (or lemon juice as a substitute)
- a drizzle or so of honey
- salt and pepper to taste
- Combine all the ingredients in a large bowl and blend well.
- Serve warm or cold.