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
