Awesome news! Remember a couple of weeks ago, when I wrote a post complaining that the medical community seems to be dead set on stonewalling Dr. Fine and his work? In a response to my post, Polly suggested that I send an e-mail to the editor of the newsletter that had inspired my post in the first place, and I did indeed send a rather long newsletter, contradicting in detail, the misguided claims of three esteemed doctors, who hold high positions among medical specialists dealing with celiac disease. Here is that original thread:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9970
The July 4, 2009 edition of that newsletter came out today, and low and behold, we got top billing. How about that? I don't see a way to provide a link to the newsletter on their website, so I have copied part of it below, including the e-mail from a registered nurse, who agreed with our position, which Beth mentioned in her prologue. Hopefully, her publishing of these remarks will help to open some eyes in the medical community, and I'm very grateful that she chose to publish at least part of my remarks.
Of course, she left out the controversial stuff, (my point by point unraveling of the doctors' claims), but at least she did include my e-mail addresses, in case any of her readers want to see the rest of it, and she gave our site a free plug, by listing the URL, in case anyone wants to check it out. All in all, this should help the "cause", to eventually obtain official medical community recognition of the spectrum of gluten sensitivity, outside of the strict diagnostic criteria for celiac disease.Dear Readers,Apparently I hit a nerve when I printed the response to Winfry’s question about the stool test and other testing done by Enterolabs. I received a very lengthy e-mail from Wayne Persky attacking each of the points made by the physicians who replied to the initial query. Unfortunately, I don’t have room to reprint all of Wayne’s comments here, but below is the gist of his reply. (I am including his e-mail in case you would like to receive a copy of the detailed analysis of his comments.)
Please note that I am not giving tacit approval for or against any position and reprint Wayne’s comments in the interest of presenting both sides of all arguments. After all, I am first a journalist and believe in balanced reporting. I do think it’s important to sort through the details however. Here are three points to consider:
(1) Medicine tells us that celiac disease is like pregnancy – you either are or you aren’t. The testing for true celiac disease is also black and white and the small bowel biopsy remains the gold standard.
(2) There is no “cure” for celiac disease and the only treatment at the moment is the life long adherence to a gluten-free diet. Since this is a major commitment and the results of not treating or intermittently treating true celiac disease can adversely impact one’s overall health, I still recommend this be ruled out before going gluten-free for other reasons. (That’s my opinion and it’s supported by conventional medicine.)
(3) Other suggested diagnoses and remedies are not “bad” and, if they help, then each individual should follow their heart, or, in this case, their gut. Lynn McGrath expresses it well in her reply which follows Wayne’s note.
Again, please note that all this discussion takes place in the interest of your good health and is not intended to slander or malign procedures or companies. Stay well! Beth
Dear Beth,I have been reading every issue of your newsletter for a couple of years, (ever since I discovered it), and I am always interested in seeing what you have to say, since I own and administrate a discussion and support board for microscopic colitis, (MC), and related issues, and those related issues most definitely include gluten intolerance, even though most people who have MC and do not have fully-developed celiac disease, (CD), (as per the official medical definition), will virtually always test negative to CD, when analyzed by the "gold standard" CD serology. Furthermore, over the years, many, many members of my discussion board have been very successful in achieving and maintaining total remission of MC symptoms by means of diet alone, while others, who are unable to achieve remission by using the conventional treatment prescribed by their doctors, usually involving treatment with one of the 5-ASA medications, or a corticosteroid such as Prednisone or Entocort EC, (budesonide), have found that they can remove gluten, (and usually casein and soy), from their diet, and thereby attain remission. Sometimes other food intolerances must be removed from the diet, but gluten is the primary offender. By doing so, virtually everyone who is a member of my board, (provided that they are willing to give the diet a fair try), is able to either achieve remission, or at least see significant improvement in their symptoms, by removing gluten and other foods from their diet, regardless of the fact that they might have received no benefits from the treatment prescribed by their GI doctor.
Therefore, even though I am well aware that you had nothing but the best intentions, when you asked those three esteemed doctors for their opinions on Enterolab, I was very distressed to see that you did your readers a grave disservice by printing, (which implies tacit approval), the gross distortion of the facts, that their response to you comprised. If you will review virtually any of the many celiac discussion boards out there, you will readily see that Enterolab has many, many satisfied customers, and to date, at least, I have never noticed a post by a single client who has found any reason to dispute their test results. I have absolutely no connection with Dr. Fine, nor Enterolab, (except as a satisfied customer), but I find the "official" position of the medical "experts", to be absolutely appalling, in this situation.
Best regards,
Wayne Persky, administrator
Microscopic Colitis Support http://www.perskyfarms.com/phpBB2/index.php
(a couple of my e-mail addresses were listed here, in the newsletter)
Dear Beth,
I am responding to the question from Winfry regarding Enterolab. In my opinion, Enterolab is considered alternative medicine. I am a registered nurse and advanced practice nurse for 31 years. I respect the opinion of the very qualified physicians you had inquired with on behalf of this question and I am sure they base their answer on evidence based practice. However, there is a place for alternative medicine for some people. I personally was diagnosed 2 years ago by Enterolab with non-Celiac's gluten intolerance and Casein intolerance. It has changed my life and I now feel great excluding gluten and dairy from my diet. My history was 12 years of going to numerous MD's: 2 neurologists for the daily headaches and frequent migraines and muscle pain. My internal medicine doctor for hypertension, fatigue, weight loss/ malabsorbtion that got worse each year and she could find no reason for these symptoms, and an allergist for seasonal and food allergies. Not one of these MD's considered diet as a cause for my symptoms. Even after my skin test for the food allergies came back positive for wheat, barley, and rye, I was not told to exclude these grains from my diet. My blood test for Celiac's was negative (I had to request the doctor test me for this). It wasn't until I went for acupuncture with a traditional Chinese medicine practitioner that it was suggested that I was wheat intolerant. I do believe there are many people who are suffering from non-Celiac's gluten intolerance that are undiagnosed as I was. I have found that functional medicine and alternative medicine practitioners do consider diet in the evaluation of a patient and the symptoms they present with. I urge anyone who is open to alternative medicine to consider it if they are having a difficult time with being diagnosed as I was with Western medicine. I am living proof that there are those of us that are just as sensitive to gluten as Celiacs are and we are just as difficult to diagnose sometimes.
Good health to all, Lynn
Tex
but that's probably unlikely to happen, because that newsletter is not posted on any website, (except this one). The newsletter is sent out to anyone who requests a subscription, but I seriously doubt that any physicians would be on the subscription list, and I have no idea of the size of the mailing list.
So far, though, I haven't even received a single e-mail requesting the details of the rest of my e-mail, that was edited out.
If the site expands this will put even more pressure on those running the site - there are only 24 hours in a day.