I just listened to a great presentation over at the PaleoSummit by Dr. Tom O’Bryan. Dr. O’Bryan is a gluten sensitivity and Celiac disease expert. His presentation was titled The Musculoskeletal Connection to Gluten and Autoimmune Disease. It was chalk full of information. I actually listened to it twice. I found a lot of what he said interesting on a personal level. There were two specific things that he talked about that related to my daughter’s food sensitivity issues.

Everything I’m going to cover comes from Dr. O’Bryan’s presentation. I don’t think you can listen for free anymore, the PaleoSummit is over. You can buy the DVD of the PaleoSummit if you are interested but it might be more cost-effective to visit Dr. O’Bryan’s website at theDr.com.

First, Dr. O’Bryan made it clear that Gluten is a family of proteins found in most grains. Gluten isn’t bad, it’s the toxic gluten that is bad. The family of toxic gluten is found in “wheat, rye, barley and all of their derivatives”.

These days, when we hear the word gluten we think of Celiac Disease. 1% of the population has diagnosed Celiac Disease. Studies suggest that 25 to as much as 60% of the population without diagnosed celiac may have a gluten sensitivity. People don’t realize they have it because they don’t feel sick. Unfortunately, if you have a gluten sensitivity but don’t have any obvious symptoms your body is still being damaged. Under the surface problems are accumulating which will eventually manifest in an unpleasant way. Here are a few examples of how gluten sensitivities can manifest in the body:

  • Intestines = Celiac Disease
  • Heart = Myocarditis or Idiopathic Cardiomyopathy (swollen heart)
  • Brain = ADHD, Autism and/or Schizophrenia
As you can see, it doesn’t just manifest in the gut. Another example is Alzheimer’s Disease. People don’t get Alzheimer’s in their 70’s. They get it in their 20’s, 30’s, and 40’s but it takes years of brain cells being slowly killed off before you notice symptoms. Scary.

Dr. O’Bryn went on to say that most autoimmune diseases begin decades before you notice symptoms. Here is a list of some of the  Autoimmune  Conditions that have been linked to Gluten Sensitivity:

  • Rheumatoid Arthritis
  • Psoriasis
  • Lupus
  • Multiple Sclerosis
  • Parkinson’s
  • Eczema
  • Gallbladder Disease
  • Hepatitis
  • Recurrent Pancreatitis

Dr. O’Bryan explained the different tests for food allergies and food sensitivities. I found this really interesting. I finally understand what our nutritionist was saying when she was talking about the blood tests she was going to have done for my daughter. At the time, it was all greek to me but it sounded good and I just kept nodding. It’s nice to finally understand what it all meant.

The long-standing food allergy, skin prick test is called an IgE test. If you have a reaction to an IgE skin prick test you will be diagnosed as having a “food allergy”. This is the ONLY test allowed to use the term “allergy”. If your results come back negative you will be told that you don’t have a food allergy and (more than likely) you are fine. The problem is the IgE test dosen’t tell the whole story. You may not have a food “allergy” but you still feel terrible. What gives?! Food sensitivity, the rest of the story.

I remember our nutritionist talking about blood tests and explaining that the tests she was going to do were not the same as the tests our regular internist would do. Again, I’m nodding and smiling, it’s all good. The other tests that can be done to determine if there is a food “sensitivity” are an IgA, IgM and IgG. I’m not going to pretend to know what that means but I do know that if any of those test come back positive you are diagnosed with a “non-IgE immune reaction” or food sensitivity response.

Sensitivity and intolerance to food may not send you to the hospital like a food allergy can but they sure can make you sick. They can also manifest as autoimmune diseases.

Autoimmune Disease – when the immune system attacks itself, for example when your body attacks your own tissue. Hashimoto’s Disease is an example of the body attacking the thyroid, rheumatoid arthritis is an example of the body attacking joints and psoriasis is the body attacking the skin.

You may be wondering how common autoimmune disorders are. Dr. O’Bryan said autoimmune disease is the #1 cause of morbidity (getting sick) and the #1 cause of DEATH (cardiovascular disease now falls under the category of autoimmune desease).

So, how do we develop autoimmune disease. Three factors were listed that lead to the development of autoimmune disease:

  • Genetic Vulnerability – an example parent with type 1 diabetes, child at higher risk
  • Environmental Trigger – most common environmental trigger in industrialized world is gluten
  • Intestinal Permeability – leaky gut

For most of us the environmental trigger is where it starts. Toxic gluten found in wheat, rye and barley leads to intestinal permeability which in turn leads to an autoimmune reaction.

Dr. O’Bryan gave the best analogy I’ve heard to describe leaky gut. The gut lining is like cheese cloth. A healthy gut selectively allows very small molecules into the blood stream. If the gut lining tears, large “undesired” molecules get into the blood stream. Once this happens our immune system goes into action and creates antibodies to kill the “invading” molecules. Let’s say a piece of “toxic” gluten got through, our immune system quickly makes antibodies to eliminate the foreign object.

That all sounds pretty good. Sounds like just what is supposed to happen. The problem is our bodies identify objects through their protein structure (amino acids). Gluten has a specific protein structure. The immune system makes antibodies to fight the gluten protein. Every time the immune system makes an antibody it remembers the exact protein structure that it’s fighting against and stays on the prowl throughout the body looking for that protein structure so it can kill it. As you continue to eat gluten the immune system continues to make antibodies. Eventually, those antibodies will identify the gluten protein structure on say, the surface of the thyroid. The thyroid has a very long amino acid protein profile. A small segment of the thyroids long amino acid chain may be identical to the amino acid profile of gluten. Big problem, the gluten antibodies attack the thyroid. After that the body then identifies the thyroid as a foreign object that needs to be eliminated and you are at the beginning of Hashimoto or Grave’s desease. Dr O’Bryan described this process as “Molecular Mimicry”.

Good news, eliminate gluten from your diet and the internal attack should stop. No more gluten, no more antibodies.

This is getting really long but there are a couple of things that I think are worth mentioning.

Back to testing. The gold standard for Celiac testing USED to be a scope and biopsy of the small intestine. This test looks for damage in the intestine. This is a good test but it identifies extensive damage and a late stage in the desease. If you don’t have extensive damage and are at the beginning of inflammation and destruction the test will come back as negative. This is exactly what happened to my daughter. They did the biopsy and said she was fine, no celiac. They did mention that her small intestine was red and inflamed but, and I quote “that’s nothing”.

Here’s the part I didn’t know. There is a test called an IEL count. This test looks for early stages of inflammation and destruction. The test cost $40 and is super easy to do but the lab/doctor won’t do it if you don’t ask for it specifically. My daughter was scoped a little over a year ago. I’m going to hope that none of this information was available at that time because if it was I’m going to get really mad.

The testing has gotten much better. There are many different gluten peptides that can cause problems. Until recently only one peptide was tested for. It is a predominate gluten peptide and 50% of the population have antibodies to it but there are lots of people who don’t and are sick from the other gluten peptides. Current test look at a wide range of gluten peptides.

I’ll finish up with two examples of how removing gluten from the diet can create “rapid gains” in health. First, Osteoporosis and Celiac Disease have been so closely linked that they now test all osteoporosis patients for celiac disease. It’s possible that celiac may be the cause of osteoporosis. A gluten free diet provides significant improvement for osteoporosis. Here’s a quote from one of Dr. O’Bryan’s DVD’s

“Treatment with a gluten-free diet has been associated with rapid gains and even normalization of bone mineral density. The greater the degree of osteopenia, the more rapid the gain.”

At the beginning of the presentation Dr. O’Bryan talked about a very small study done with 10 patients with debilitating migraines. These people had not been able to work for eight years because of their migraines. A doctor tested them for gluten sensitivity (not celiac) and found that all 10 people had a sensitivity to gluten and they all had lesions on their brains. He put all 10 patients on a gluten free diet. 7 of the 10 never had a headache again (after 8 years!), 2 got partial relief and 1 refused the diet. Wow, a diet change and a new lease on life. Pretty cool.

If you decide you need to go on a gluten free diet (100% gluten free, you can’t cheat) and start to feel better but not great it’s possible that you need assistance repairing the damage that has been done. You can go to Dr. O’Bryan’s site and investigate his “Gluten Sensitivity Support Packs”. They are a bit expensive but he does list what is in the packs so you can go out and make your own. Don’t waste your money on the supplements if you aren’t following a strict gluten free diet. That’s the first and very important step.

Sorry for the length of this post. I hope you found the information as interesting as I did. Dr O’Bryan is a great speaker. You can probably google him and find some podcasts if you are interested.

Eat Well, Feel Good, Have Fun!

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3 Responses to Gluten

  1. Maureen says:

    Great article Amy, I did find this very informative. Great to know which tests to ask for. Thanks!!

  2. amy says:

    I’m glad it was informative. Sometimes I can get so wrapped up in what I’m trying to stay I don’t think I end up actually saying anything. I was thinking about the IEL count test. It sounds like it’s a test that you get in conjunction with a biopsy. I haven’t read anything that suggests you can have it done with as part of a normal blood test. Here’s some more info. about it that I found at http://glutendoctors.blogspot.com/2009/07/diagnosing-celiac-disease-intestinal.html – I’ll put the quoted info in the next comment.

  3. amy says:

    “If you’ve been through an intestinal biopsy to determine if you have celiac disease you were likely told one of two things: “your villi are very damaged, you have celiac disease” or “your villi appear normal, you don’t have celiac disease.”

    The focus of a biopsy is the health or damage of your villi – the finger-like projections responsible for absorbing nutrients and giving your small intestine its large surface area (the size of a tennis court!).

    First, villous atrophy should no longer be considered the “gold standard” when diagnosing celiac disease.

    Second, if a patient chooses to receive a biopsy they must ensure that it includes an IEL (intraepithelial lymphocytosis – don’t worry I explain below) count so as not to miss the earlier manifestations of celiac disease.

    Wow, that’s a mouthful. Don’t worry about pronunciation, let’s just stick with “IEL” and explain what it means.

    When you think about it, it makes sense that the first thing that happens in celiac disease is not complete annihilation of the villi. Considering the small intestine is 23 feet long and the surface area is so large, something must happen before the destruction of the villi. Everything happens on a gradient, right? Exactly. So it should be no surprise to learn that before the villi atrophy they inflame or get irritated. That’s what the IEL count measures – the amount of inflammation. So if a biopsy is not taking an IEL count, it could very well be missing the early stages of celiac disease.

    Now please understand I’m not a great fan of biopsies. But if you plan to get one you should at least get the most accurate and comprehensive data on the health of your small intestine.

    If your doctor is not comfortable with the IEL count or it’s not part of his or her “typical” study, find a new practitioner – that doctor is out of step with current research.”

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