Wednesday, January 07, 2009

We Still Have A Lot of Work to Do!


With The Gluten Effect’s publishing finally on the horizon, we’ve been contacting various groups who support those patients with celiac disease. It is my hope to educate those groups on the difference between celiac disease and gluten sensitivity such that we can help their family and friends who, while perhaps not celiac, may very well be suffering from the many problems gluten sensitivity creates.

While we have received many positive responses I chose to share the one “negative” response I received as an example of the pervasive attitude in the medical community which we have to overcome to help the millions of people suffering with gluten sensitivity.

Here’s the letter: (I have left out the person’s name and the specific group in order to respect confidentiality.)

Dear HealthNOW staff,

Thank you for your email. While I appreciate the importance Dr. Petersen places on the diagnosis of gluten intolerance, and her commitment to her patients, I must decline the request to add your links to our web site at this time.

We are affiliated with the Celiac Disease Foundation, and generally advise physicians and patients to follow the guidelines for celiac diagnosis and treatment recommended by university celiac disease centers, including those at U.C. San Diego, Columbia University, University of Maryland and University of Chicago. This approach appears to differ in significant ways from the one described on your web sites. For example, the use of Enterolab stool testing, and the dismissal of the intestinal biopsy as a misguided approach advocated by "several" clinicians, is inconsistent with our philosophy (8/26/08 entry in her blog).

While alternative approaches to diagnosis may prove fruitful in the future, we feel we will have the greatest impact in our local medical community at this time by using the resources of universities and peer-reviewed medical journals that mainstream physicians trust. We do, however, strongly support the use of integrative medicine in the treatment of celiac disease and gluten sensitivity.

There is a great deal yet to be discovered about celiac disease and gluten sensitivity, and I wish your colleagues well in the path they have chosen.


And here's my response:

Dear ________ (name left out to protect identity),

Thank you for your response. I would like to thank you for all the
good work you're doing in the field of celiac disease. Hopefully you will grant
me a few minutes of your time so that I can "state my case" for the work I'm doing with gluten sensitivity.

My upcoming book is heavily referenced and peer review literature is
among those over 400 references. Once such reference is from The
New England Journal of Medicine, October 2007 article by Peter Green,
MD.

Below are some quotes from the article and some comments from me.

"The diagnostic criteria developed by the European Society for
Pediatric Gastroenterology and Nutrition require only clinical
improvement with the diet, although histologic improvement on a
gluten-free diet is frequently sought and is recommended in adults
because villous atrophy may persist despite a clinical response to the
diet."

[In my experience of over 20 years I frequently see dramatic changes
in patient's health from a gluten-free diet despite a negative
intestinal biopsy. I believe the opinion of the above European
Society whereby clinical improvement on a gluten-free is sufficient,
is a trend that will soon be more prevalent here in the US.]

Serologic [Blood] Testing

"Typical indications for serologic testing include unexplained
bloating or abdominal distress; chronic diarrhea, with or without
malabsorption or the irritable bowel syndrome; abnormalities on
laboratory tests that might be caused by malabsorption (e.g., folate
deficiency and iron-deficiency anemia); first-degree relatives with
celiac disease; and autoimmune diseases and other conditions known to
be associated with celiac disease."

"The most sensitive antibody tests for the diagnosis of celiac
disease are of the IgA class. The available tests include those for
antigliadin antibodies, connective-tissue antibodies (antireticulin
and antiendomysial antibodies), and antibodies directed against tissue
transglutaminase,"

[Serologic testing of an IgA and IgG nature is what I utilize in my
practice and recommend for patients. Enterolab is mentioned for those
patients not local to our area who have doctors whom refuse to order
the serologic testing. While the limitations of the stool testing of
Enterolab are mentioned in our upcoming book, if it's the only
possible choice available, it may well provide the data a patient needs to make the important change to a gluten-free diet. And if that dietary change results in health improvement, it’s certainly worthwhile.]

"Although no studies have examined the number of biopsies required
for diagnosis, we believe that at least four to six endoscopic-biopsy
specimens should be obtained from the duodenum [small intestine], given the patchy
nature of the disease and the difficulty of orienting the small pieces
of tissue taken during biopsy for assessment of villous morphology."

"The spectrum of pathologic changes in celiac disease ranges from
near-normal villous architecture with a prominent intraepithelial
lymphocytosis to total villous atrophy. Pitfalls in the pathological
diagnosis include overinterpretation of villous atrophy in poorly
oriented biopsy specimens and inadequate biopsy sampling in patients
with patchy villous atrophy."

"Celiac disease occurs in nearly 1% of the population in many
countries. The diagnosis, which is straightforward in most cases, is
usually established on the basis of serologic [blood] testing, duodenal [small intestine] biopsy, and observation of the response to a gluten-free
diet. A poor response to the diet is common."

[This is the area where I know our opinions diverge but please hear me
out for a moment. There are 23 feet of small intestine and a biopsy
is attempting to identify small patches of villous atrophy. I have
many, many patients who are extremely gluten sensitive whom have been
told that they are absolutely fine to eat gluten. Why are they told
such a thing? Because their biopsy was negative. Are we really
helping our patients condemning them to lifelong suffering based on a
test of such a gross nature? I don't believe so. Much of the poor
response to diagnosis may very well occur because so much damage has
been done when a diagnosis is finally confirmed. By the time the villi
are flattened, often irrevocable damage has occurred to the digestive tract or some other organ system. Once autoimmune disease occurs, complete remediation is often not possible. Below Dr Green mentions the importance of early diagnosis. I don't believe that for the majority of people suffering from gluten sensitivity that early diagnosis is going to occur based on the use of intestinal biopsy alone. It’s too gross of a test for many patients and too insensitive at time to detect subtle changes of the villi. This is the very reason I utilize the testing I do, including the response of from the patient upon elimination of gluten from their diet. Early diagnosis is exciting because a patient discovers that they are gluten sensitive while they still have good functioning of their small intestine. A true early diagnosis should occur long before intestinal villi have been severely damaged. And that in sum is what I believe will be looked back on as our current greatest mistake - waiting for villous atrophy on biopsy before diagnosis is akin to waiting to diagnose risk for cardiovascular disease until the patient has suffered their first heart attack. As doctors we promise to do no harm. I believe we must seriously rethink and readjust our diagnostic criteria for diagnosing celiac disease and gluten sensitivity.]

"Increasing awareness of the epidemiology and diverse manifestations
of the disease, as well as the availability of sensitive and specific
serologic [blood] tests, especially among primary care physicians, will lead
to more widespread screening and diagnosis, which in turn will lead to
greater availability of gluten-free foods and efforts to develop drug
therapies that relieve patients of the burden of a gluten-free diet.
In addition, earlier diagnosis may lead to a reduction in the
complications of the disease."

Thank you for your time. I'd be happy to send you a copy of
our upcoming book, The Gluten Effect. And I'd would love to hear your
feedback.

Yours in health,

Dr Vikki Petersen

2 comments:

Mom said...

I posted a link to this blog on three celiac forums. I used Enterolab about 9 months ago to identify sensitivity to gluten. I have two gluten sensitivity genes - DQ1 and DQ2 and positive values for gluten, casein, and tissue transglutaminase with evidence of malabsorption. According to the traditional celiac community, I cannot have celiac disease. That's fine - I don't think of it as a disease anyway - just a genetic difference (I have older genes;) An elimination of gluten and casein have virtually eliminated migraines I have had since childhood and joint pains that I attributed to getting older are gone completely. Hopefully, your work will open the eyes of the traditional celiac community to the wide range of gluten sensitivities. Thanks for your work and I hope to see your book released soon.

LBD

aklap said...

Very well said Dr. Petersen!

I like your analogy of the heart attack and cardiovascular disease. That may have to replace a favorite of mine: waiting for liver damage to dx alcoholism.

I am one of those that had negative blood work, negative biopsy for CD - but ultimately figured out [without help from the medical community] that gluten is not my friend.

The gluten intolerant world has seen lots of changes in the past 5 years that I've been GF. We are slowly seeing recognition and some acceptance of Non Celiac Gluten Sensitivity. Thankfully, doctors such as yourselves, Dr. Fine, Dr. Scot Lewey, Dr. Rodney Ford, Dr. Marios Hadjivassiliou [just to name a few]; all help to further the awareness and acceptance of the fact that the effects of gluten go far beyond the current gold standard medical definition of Celiac Disease.

Keep up the good work! In 10 years, the rest of the world will have caught up with all of you.

Al