Dr. Cordain,
Thank you for taking the time at the end of your day to return my call on Friday. It's a shame that I missed your call as talking directly is more thorough. I appreciate receiving your email address.
I had left my GI doctors office last Monday, reflecting on his words that he'd like to continue scoping me every six months so that he will catch it early. I was scoped initially in October 2011, and learned at that time that my stomach was grey and smooth as a globe; the pathology report and labs gave the diagnosis of Inherited Autoimmune Atrophic Gastritis, chronic inflammation, with Intestinal Metaplasia. Labs drawn showed my Parietal cell antibody count at 124.6, which was off the chart as it should not have been greater than 20. My saving grace for not having developed Pernicious Anemia has been that I've been taking supplements (quite a bit) for quite a few years.
At that time my mucosa lining was gone and I was told by my then GI doc and an Internal MD that it was irreversible due to it being an 'inherited' autoimmune condition. I had been diagnosed 3 years earlier with having Celiac, and had been 'gluten free' for 3 years at that time. I attended a autoimmune presentation held at the Anschutz (sp?) Medical Center last Winter and was told by a total of 6 GI docs that what I have is rare and that it isn't reversible and that more than likely I'd be losing my stomach bit by bit, if not my life. The first GI who scoped me wasn't supportive of the work that my primary doctor does, that while she (Monique Maly, MD) is an MD, she practices extensively alternative healthcare. My response to that GI not being a good fit for me, was that I got a second opinion with another GI, Dr. Luke Evans, who has now scoped me twice. He feels life the other GI docs, and the pathologist, that my condition has an exteremely high risk of developing into gastric carcinoma.
In November of 2011, Dr. Maly did an in depth stool analysis on me, which identified that I was still harboring H-Pylori, and due to the fragility of my stomach, we treated it by botanicals (Pyloricil), which did eradicate the H-Pylori. I had also discontinued caffeine in October upon learning of the condition of my stomach.
I was scoped again in April 2012, which endoscopically viewing my stomach showed that I again had a normal, healthy, mucosal lining, but also revealed that I had 3 stomach polyps, the pathology report stated that I still had autoimmune atrophic gastritis, but my parietal antibody count had come down to 106.3; still way too high.
I was continuing to eat 'gluten free', but eating gluten free breads, cereals and grains, along with continuing to drink a green drink (which I'd been using for 8 years), Garden of Life's product, Perfect Food. I then discontinued all dairy products.
I was again scoped in October 2012, and while the 3 polyps are gone, the mucosa lining looks great and visually, my GI doc didn't see any inflammation; however, the pathology report came back with Atrophic Gastritis, with moderate inflammation; the repeat Parietal antibody count was at 105.1. While it came down a point, it's still way off the chart.
I met with my primary MD on Friday, 11/30, and she believes that my body is continuing to cross-react to 'something' and she mentioned doing food allergy testing, which I've had previously (years ago, before my having gone gluten free). I then met with the GI doc on Monday, 12/3, to review my reports in depth from the 10/24 scope, and it was then that he identified very clearly that he wants to continue scoping me (endoscopy) every 6 months and 'he'll catch it early' (the cancer). In answer to my question, which I've been asking ever since learning a year ago of my autoimmune condition, does he not know of how to regulate my immune response, and the answer, again, was no (he's used steroids in the past for folks with rheumatoid conditions) and he and I know that steroids is not the answer.
I left his office that day a week ago, and stopped at Vitamin Cottage, a store that I shop at frequently. In talking with the nutritionist there (my nutritionist is on maternity leave), I shared with her my story, along with my frustration. From her, I learned for the first time since learning anything at all about Celiac and 'gluten', of how the other grains and legumes can be as much a problem for some as gluten is. She spent time with me, providing me with information, she sent me a video presentation: Gluten, the untold story, wheat isn't the only chapter; and she introduced me to the concept/theory/belief of the Paleo diet. Leaving that store I realized that while I've taken great steps to do what I can to get healthy, I had nothing to lose in incorporating the Paleo diet/lifestyle into my life.
I went to your web site, reading much of the material there, and last night purchased your book: The Paleo Diet Cookbook, which I've appreciated starting to read. I had gone to that store last evening to get your book: The Paleo Diet, which they were out of.
I contacted the company, Garden of Life, last week, telling them of how I'd been using their product for 8 years, that I have Celiac and have been gluten free, but that I've also got autoimmune atrophic gastritis and that my primary MD believes that I'm continuing to cross-react to 'something', and they shared with me that people with Celiac shouldn't be using their products. Needless to say, I've discontinued it.
My personal belief of my condition is that it's been an environmental response due to my being genetically predisposed, due to both my having harbored (unbeknownst to me) the H-Pylori, coupled with my body continuing to react to something that I'm continuing to take in. Since learning of how the body reacts in some individuals to all grains, legumes, and so many other foods, e.g., green tomatoes, pickles, I placed the call to you last Friday to see if you have colleagues whom you are working with, with individuals with conditions such as mine. I believe that my immune response has been continuing due to the continued ingesting of foods that I had been eating. I do have a family history on my father's side of dementia of some sort (autopsies weren't done) in my father, his mother, and two of my paternal aunts. I suspect that quite possibly they, too, had the same problem as I, but their conditions were never known, nor treated. My extensive supplementation up to this point has been my saving grace in that all of my nutritonal labs are excellelnt.
I did call my primary physician, leaving word, a message, that I've started the Paleo diet, and her office called back, letting me know that she's extremely supportive of my incorporating the diet into my life; saying that if I'd like to meet with her to discuss it, that she's available. To my knowledge, while she's supportive of it, I've been seeing her for about 4 years now and it wasn't until I mentioned the Paleo diet (following my meeting with the nutritionist at Vitamin Cottage on 12/3, who introduced me to a concept which I'd never heard of), that she said that she does approve of me doing it. I'd like the opportunity to meet with a physician who is actively involved with working with folks with autoimmune conditions, who is also very knowledgable of the Paleo lifestyle. One of the many aspects of working with Dr. Maly has been that while she's an MD, who also accepts my Blue Cross Insurance (PPO) insurance (a very important fact due to the cost), she totally looks out of the box, utilizing alternative healthcare, which I've appreciated.
I realize that my email to you has been long and I respect that your time and how you spend it, is very valuable to you. I had worked in healthcare as an administrative assistant (17.5 years at The Children's Hospital of Denver; 5.5 years at Swedish Medical Center) and know how valuable the faculty are in positions such as yours.
I'll await hearing from you as your schedule allows.
Appreciatively,
Catherine
Dr. Cordain's Response:
Hi Catie,
First off my heart goes out to you for having suffered with this autoimmune condition. Secondly, there is no guarantee that the Paleo Diet will cause your disease to go into remission. Nevertheless many people all over the world with a variety of autoimmune diseases have reported therapeutic effects or even complete remission of their symptoms after following this lifelong way of eating. Together with my graduate student, Trevor, we have just completed a large case study involving about 100 autoimmune patients who had adopted the Paleo Diet. We will be reporting the results of this study in the scientific literature, and our results are encouraging, paticularly for patients with autoimmune diseases involving the GI tract. We had no subjects with autoimmune atrophic gastritis. There are no health or nutritional risks by adopting the Paleo Diet, in fact the opposite is true as this way of eating actually reduces the risk for many common chronic diseases and increases the nutrient density of the diet because fruits, veggies, seafood, and meat are vastly superior nutritionally to grains, processed foods, and dairy products which comprise about 70% of the calories in the typical US diet.
As you have rightly deduced, virtually all autoimmune diseases result from both inherited (genetic) factors and environmental factors. The main inherited factor associated with autoimune diseases is part of the immune system called the human leukocyte antigen (HLA) sytem. There are thousands of versions of HLA molecules, but only a few are associated with autoimmune diseases. If you have inherited one of these so-called HLA susceptibility haplotypes, then your risk for an autoimmune disease rises dramatically. However, it has been estimated that about 70% of the risk for autoimmunity comes from environmental factors. Many immunologists and scientists (myself included) studying autoimmune diseases now believe that increased intestinal permeability or a "leaky gut" represents a fundamental environmental trigger that precedes the development of most autoimmune diseases.
Gluten free diets have been shown to be therapeutic for many autoimmune patients (not just celiac patients), and it is known that wheat contains at least three compounds (gliadin, wheat germ agglutinin [WGA] and thaumatin like proteins) that increase intestinal permeability. Other gliadin containing grains include rye and barley. With the Paleo Diet, we recommend that you eliminate all grains and all pseudo grains (quinoa, amaranth, buckwheat and chia seeds). In my latest book, The Paleo Answer, I outline the nutritional problems with all grains and how they increase intestinal permeability.
You had mentioned that you were consuming Garden of Life's, Perfect Food, Green Drink for 8 years prior to your diagnosis of autoimmune atrophic gastritis. I directed my internet browser to this company's website and found the ingredients in this product which is actually labeled, "Raw organic green juice blend". The 5 listed ingredients are: 1) organic barley grass juice, 2) organic alfalfa grass juice, 3) organic oat grass juice, 4) organic wheat grass juice, and 5) organic kamut grass juice. All of these ingredients in this product contain a variety of compounds which adversely affect intestinal permeability and epithelial cell function (epithelial cells are the cells lining the GI tract, including the stomach). Four of the five ingredients are derived the leaves of grains (barley, oats, wheat, kamut). Kamut is a variety of wheat known as Khorasan Wheat. The leaves or blades of grasses (whose seeds we call grains) also contain high concentrations of antinutrients that are also found in their seeds, including gliadin, WGA and thaumatin like proteins -- all of which increase intestinal permeability and adversely affect normal immune system function. Alfalfa sprouts contain some of the highest concentrations of compounds known as "saponins "in any foods commonly consumed in the western diet. Saponins increase intestinal permeability, but moreover also have powerful immune system stimulating effects -- so much so that immunologists routinely use these compounds in vaccines (called adjuvants) to upregulate (agitate) the immune response. Hence, this product would be one of the worst supplements anyone with a genetic predisposition to an autoimmune disease could consume.
Besides grains, grain leaves and alfalfa sprouts, other elements in the typical western diet can also increase intestinal permeability including all legumes (peanuts are legumes as are all beans), potatoes, tomatoes and other and nightshade plants. In my most recent book, The Paleo Answer, I have outlined the scientific evidence with hundreds of citations, showing how these foods increase intestinal permeability and act as immunological adjuvants to impair normal immune system functioning. Green tomatoes, cherry tomatoes and yellow tomatoes contain high concentrations of the compound alpha tomatine which increases intestinal permeability. Ripe red tomatoes are almost devoid of this compound, so unless you have an autoimmune disease you dont have to forgo this delicious food. Potatoes contain two toxic glycoalkaloid compounds which are saponins known as alpha solanine and alpha chaconine that also increase intestinal permeability and rapidly enter the bloodstream and may cause adverse health effects. In my latest book, The Paleo Answer, I show how these effects occur and provide the scientific citations.
Other foods which may be problematic for autoimmune patients because they increase intestinal permeability are: ethanol (alcohol), aspirin, ibuprofen and other NSAIDs, antacids containing aluminum hydroxide (Alum), birth controll pills, hot spicey peppers containing capsaicin (salsa, hot sauce, chili peppers, cayenne peppers, etc).
With autoimmune diseases, I recommend that you eliminate the obvious foods first (grains, dairy, legumes) and then experiment with eliminating other foods that increase intestinal permeability. One final food to consider -- egg whites which represent a common allergy also contain a compound called lysozyme which can impair intestinal function and allow large protein molecules (antigens) access to the systemic immune system
Most physicians, unlike academicians, do not have the luxury to read deeply into the scientific literature to make these connections between diet and autoimmunity, and most immunologists dont read the nutritional literature.
Cordially,
Loren Cordain, Ph.D., Professor Emeritus
