Diagnosis

We are very lucky to have Dr. Cynthia Rudert, MD practicing in Atlanta. She is the only nationally recognized celiac specialist in the Southeast.

Recently I was fortunate enough to interview the very busy Dr. Rudert about celiac and her thoughtful answers were so informative that the interview will be posted in several parts. Unlike many doctors I’ve encountered, Dr. Rudert is always learning as much as she can about celiac so can help her many patients with the condition, as well as those with severe gluten-intolerance. I boldfaced some of the most crucial comments in Dr. Rudert’s reply below.

——————————————————————–

Dr. Rudert, you have been treating people with celiac for many years now, but it seems that many doctors still think the condition is rare. Since we now know the condition affects almost 1 out of every 100 Americans, it is far from rare. What do you consider the main problem is, in getting the word out to the medical community about this greatly under diagnosed disease?

“Celiac Disease is the most common autoimmune illness of humankind. If one were to take all the patients with Crohn’s Disease and all the patients with Ulcerative Colitis and add in all those with Cystic Fibrosis and then triple the numbers that would be equal to the number of individuals with Celiac Disease. For my Math friends: 3X (Crohn’s +Ulcerative Colitis +Cystic Fibrosis ) = Celiac Disease. Approximately 98% of those with Celiac are not diagnosed or misdiagnosed. Read More »

There are 3 weeks until the free Celiac testing event at the University of Chicago, Saturday, October 10. For complete details please read here.

Please call to set up an appointment as the event is expected to fill up fast..

For more info: Call The University of Chicago Celiac Disease Center at 773.702.7593.

——————–
Author Information: Anne Steib, Chicago, IL
Anne Steib
gfreegurl@yahoo.com
http://www.examiner.com/x-13312-Chicago-GlutenFree-Food-Examiner

With Celiac awareness on the rise, more and more people are getting tested and properly diagnosed. Many people have lived with troubling symptoms for years before getting a doctor to order the correct tests and give a formal diagnosis. Once people receive their diagnosis, they can cut gluten from their lives, allow their bodies to heal and feel better than they have in years.

Current studies predict that 1 out of 100 Americans have celiac, that is over 3 million Americans, and of those, 97% are undiagnosed. The longer an individual goes with undiagnosed celiac, the greater their risk to develop other serious illnesses.

On average, a child will visit 8 pediatricians before being correctly diagnosed with celiac disease.

As a result The University of Chicago Celiac Disease Center offers a free blood screening every October. This year, it will be held October 10, 2009. Pre-registration is required, and opens September 1, 2009. Please call 773.702.7593 to register. The free blood screening will take place on the 4th floor of The University of Chicago Duchossois Center for Advanced Medicine. Read More »

The below article by Nadine Grzeskowiak is a good explanation of why the gluten-free diet can work for anyone and everyone and pitfalls of the celiac tests.  Medical experts speak of the gluten-free diet as if it is something strange, yet most unprocessed foods you cook yourself are naturally gluten free.  All meats, seafood, fruits, vegetables, nuts, legumes, dairy (unless gluten was added to them), corn, rice and other grains,(besides wheat, barley, rye or oats), naturally do not contain harmful gluten.  Wheat, barley, rye and oats don’t contain any nutrients you cannot get in other foods, so what is the big deal with not eating them?Nadine’s article is excellent.  The only thing I would add is if you do eliminate the gluten grains of wheat, barley, rye and oats and feel better within two weeks, get yourself tested for celiac disease.  A positive diagnosis makes dealing with healthcare providers much easier.  That said, if it comes back negative but you feel better being gluten-free then eliminate gluten from your diet and be healthy. You can find Nadine’s blog article at Gluten Free RN -John Libonati, Editor Glutenfreeworks.com
john.libonati@glutenfreeworks.com

Discussion | | Nadine Grzeskowiak | May 13, 2008

I have thought for a long time about this very question.  Who would suggest such a thing?  I would.  The main reason I would dare to make such a statement is because we have been so negligent in recognizing and treating people with celiac disease.  Not a day goes by that I don’t hear about or speak to someone directly who has suffered needlessly for years.  The other main point I want to make is that NONE of the currently available testing is 100%.  The blood tests and endoscopic biopsies are great tools if they are positive.  If they are negative, I have heard of too many people tell me ‘I don’t have celiac disease, my blood test/biopsy was negative’.  This is a major cause for concern to me.  Both of these tests do not confirm you don’t have, or will never develop celiac disease.  First, neither test is 100% reliable.  Second, both tests are simply a snapshot of right now.  I have also seen test results that are clearly positive for celiac disease, but read as negative by a medical provider that does not understand what the results mean.  The genetic testing is great and it is my first choice when testing people.  The test is a cheek swab, I get results in one week and it is covered by most insurances.  I utilize Kimball Genetics in Denver, Colorado,  www.kimballgenetics.com.  I have run into this scenario in the past week: a 12 year old on a gluten free diet for several months, a remarkable recovery from many symptoms while on the gluten free diet, and yet, she tests negative for DQ2 and DQ8.  Is she at risk for celiac disease if she eats gluten?  Are there other genes that could be looked at?  I am gathering more data on this because nothing is black and white with gluten intolerance, there are many grey areas.  Other than, of course, the need to be on a strict gluten free diet for the rest of your life if you have celiac disease.  Not much grey there.

So, this leads me back to the original question: everyone on a gluten free diet?  In my perfect world, the answer would be a resounding YES!  If people would simply try the gluten free diet for a month, most, if not all of those people will feel better.  It remains simply a diet change.  Change your diet and feel better, doesn’t that sound appealing.  To some yes, and to others, not really. Not without the proof that they need to change their long held diet and lifestyle habits.  It also sounds quite un-American to say ‘I can’t eat wheat, barley, rye and oats’, by extension, bread, pies, cakes, beer and pizza.  My most recent convert to a gluten free diet, said to me, “You know I don’t even miss the bread anymore, it doesn’t even appeal to me, I feel so much better on the gluten free food”.  This is a woman who has had symptoms for most of her 76 years and I had a hard time convincing her to try the gluten free diet for a month.  She is convinced now.  I can tell many stories with the same happy ending.  I can also tell you that most men have a harder time changing anything, let alone their diet, than women.  Trust me, I am a nurse and I have no reason to lie to you.  Try it.  Go gluten free for a month and contact me with your results.  GO!