The Gluten Conundrum – Interview with Dr. Wheeler

Macaroni salad with fork

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.

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Posted in Dairy-Free, Gluten-Free, Interviews, Lactose-Free, Nut-Free, Salads, Vegetarian, Wheat-Free  |  19 Comments

19 Responses to The Gluten Conundrum – Interview with Dr. Wheeler

  1. Damion says:

    This is a terrifically informative interview… Thanks for posting it. I was just recently diagnosed with Crohn’s and am in the process of trying to figure what that means, and this gave me some great talking point to bring up with my ND (my MD, on the other hand, would find these questions humorous). I always enjoy reading your posts, but this one was particularly helpful. Thanks again.

  2. Erica says:

    Thanks! Yes, it oftens happens that way for us as well – the ND is sympathetic to experimentation, and the MD is not. We have a new MD who seems to have broken this mold somewhat. But it’s unfortunately still the norm from what I’ve experienced.

  3. Ina Gawne says:

    Great Post! Very informative, thank you for sharing. Sorry to hear your son got sick – the same thing happens to me with just the slightest cross contamination, so consequently, I am super careful on the rare occasions that we do eat out. It is also so encouraging to hear that the medical profession has come this far…back in my day, most Doctors misdiagnosed Celiac Disease for IBS.

  4. Thank you so much for taking the time to post such a clear and informative article. Such a complicated issue, isn’t it?

  5. Kristin says:

    Thank you, thank you! My son and I both have tested negative for celiac disease, and both of us had elevated anti-gliadin antibodies. I also have colitis, and have never had a doctor tell me once that diet could have anything to do with it. IBD runs rampant in my family, and I’ve made it my mission to do everything I can to keep my boys from suffering from it.

    And by the way, that macaroni salad looks fantastic! :)

  6. Tracee says:

    Great post. I have both so I feel better mostly SCD. I have heard that an IgA deficiency can cause a negative Celiac test, and people with that deficiency are much more likely to have Celiac and other food allergies.

  7. Erin says:

    Cyrex Labs has new saliva panels that can identify non-Celiac gluten sensitivities. They test for reactions to 12 different components found in wheat instead of only alpha gliadin.

    They can also test for cross-reactvity to other foods as well as what part of the body the inflammation affects (for the majority, gluten damages the brain, the heart, the skin, the respiratory tract, or the joints.)

    http://drknews.com/category/cyrex-labs/

  8. Pingback: Why Getting Gluten Sensitivity Test? | diet and health

  9. Missy says:

    FYI: Your link to Dr. Wheeler’s web site does not work when I click on ” Visit his website”.

    • Erica says:

      Thanks. Fixed. Yes, I read your other feedback regarding the design, and it’s been on my list of to-dos for a while. Hopefully once I’m finished with the book. Sorry for your troubles. By the way, my About page has my email address, for future reference. Best wishes, Erica.

  10. Bethany Hilty says:

    I would like to know what bowel condition Dr. Wheeler was diagnosed with because I’m going through a lot of testing to figure out what is wrong with me as my previous diagnosis of IBS is not satisfactory to my current dr. and my symptoms are increasing in severity. I didn’t think to mention my daily back pain to my dr. since I’ve always attributed it to my large breasts. Could you please tell me what the name of the condition is so that I might ask my dr. about it?

  11. Pingback: Bye bye anemia! | Gutsy By Nature

  12. Norine Mungo says:

    I have suffered with IBD my whole life. I was diagnosed with Crohn’s disease when I was 27 and pregnant with my third child. Before that, for as long as I can remember, my stomach hurt horribly pretty much with every meal or snack, and I was so skinny that everyone would say that I looked like I was starving. My mom used to give me Malted Milkshakes to try and fatten me up. I’d double over in pain and vomit and beg her to not give them to me. When I was 16, the family doctor met us for the umpteenth time at the hospital for possible appendix attack. He made the decision to remove the HEALTHY appendix so that if I continued to have pain, they could rule that out in the future. Well, pain continued and then they thought it was Endometreosis. As I said, by 27 they said it was Crohn’s after a colonoscopy. I was on Azulfidin for many years and then just stopped taking it I continued to suffer massive diahria days and almost always vomited up my food. On top of everything else, I had asthma, thanks to my parents being smokers when I was a child. Between my snotty nose, wheezing on exercise, vomiting, and food poisening bends, I was quite the popular gal. I dealt with the pain and vomiting my whole life and the accusations that I was anorexic. You get to a point where you just accept pain as the norm. I am now 60 years old. Last year, my middle daughter told me she’d been tested for Celiac and that I should get tested. I thought it was malarky! Then my oldest daughter was tested and she also has it. I still didn’t change my diet and continued in pain. Last week my life changed. The flare up was so bad that after a week of debilitating pain, I wound up in the ER where confusion set in. First, I hadn’t been to a doctor in 4 years and the ER doctors were like, “You don’t have Crohns disease, you don’t fit the profile.” They had me on morphine, and began testing for Gall Bladder and Liver etc. Hmmm, tests came back fine on those, and they got more confused. I mentioned the Celiac to them. NOPE, they said, YOU Don’t fit the profile! So I asked what the profile was? They said, first and foremost, you are overweight, so, You can’t have Crohn’s or Celiac and those disease cause malnutrition and underweight. When they tried to feed me regular food, I vomited it all up and was in extreme pain. After admitting me and doing the IV rest, I tried normal food again, to no avail. Finally they tried the Gluten Free diet. Very first meal, my stomach had NO PAIN! Dinner, NO PAIN, and then in the morning, NO PAIN. There was no nausea or pain at all!They had taken the blood test but the results weren’t back yet. The only reason they even caved and did the tests and the diet was because, after I did research on my iphone, I realized that I hadn’t given them my LIFETIME story, and that I WAS underweight until I had Pneumonia in 2005. That whole year I was on Prednisone and Antibiotics and the Pneumonia kept coming back. I gained 80 pounds that year. Over the last 9 years I have put on an additional 20 and I am exactly 100 LBS overweight. I am 5’7″. Once I told them that, and that I also discovered that sometimes Crohns can cause weight gain as well just from the inflamitory process itself, and that I did have the canker sores in my mouth, and my eyes were always inflamed and the eye doctor was always giving me Tobradex for the eyes, and that I way couldn’t eat chocolate or malt, and beer would always put me into almost a closed up state in my nose and throat, yadda yadda, well, they caved and tried the Celiac approach. Funny thing is, I have been out of the hospital 1 day now, and this is the third day of Gluten Free, and NO PAIN, no Vomit, and oddly enough, my nose isn’t stuffy, and all those canker sores healed up over the 4 days of this. So, like the interview says, it doesn’t matter to me what their test results say, I know without a doubt, that this Gluten Free regimen is remarkably responsible for me being pain free on eating for THE FIRST TIME in my life! I also realize that I need to be careful with milk and bought lactaid milk, and I know that the reports say hard aged cheese is better than soft for the lactaid issue. I am 60, and I am in shock that this really does work! But because the response was so dramatic, I am going to be on this the rest of my life. I feel amazing today. I know there will be rough bumps in the road, but now I will be aware and alert to changes in my health. I want to keep my intestines intact! LOL. So, thank you for your blog and I will bookmark this page so I can learn more and keep abreast of it all. Ever Yours, 30s Uke Girl, Norine Mungo

  13. Juanita says:

    I’m actually quite annoyed with this doctor, to tell you the truth.
    Firstly, if not eating gluten makes you feel better, then yeah you can do it – but he really ought to have explained to people that you need to seek proper help about what you will be missing from your diet. I’ve been a diagnosed coeliac for 13 years and I never get enough fibre.
    Another thing, no, in no way shape or form do the symptoms of coeliac go away in a week! Is he insane? This disease takes 3 months of zero gluten to just START to repair itself! I highly recommend people not take advice from doctors and diets on the internet. I’ve just about had it with misinformation from doctors about this disease.

    Also, no, the blood tests are not that accurate at all. If you have malnutrition or coeliac symptoms you need to get a scope in your small intestine. Even if the results come back negative.

    • Erica says:

      Thanks, Juanita. You make valid points, and I have to agree with you to some extent in that you must figure out the food your body needs, fiber, nutrients, fluids, etc. It wasn’t until my son started eating a lot more vegetables that he was getting enough fiber (after cutting out grains). Yes, blood tests are not foolproof, just one tool. My feeling (after having my son scoped several times in just his youth) you shouldn’t have to be scoped all the time, only when something is inconclusive or you are ill and haven’t been scoped in a while (of course Crohn’s is different than Celiac).

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