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True Story: Doctor Says “Don’t Eat Wheat Ever Again”

 

gluten free challah bread
Gluten Free Homemade Challah Bread

This is a quote that a lot of people are hearing these days. What happens after your doctor says these words? Here is a synopsis of my journey; if any of this sounds familiar, give it some serious thought…there may be a very simple answer.

I first heard these words while I was barely concious, in a bed at Methodist Hospital in Houston. I had become so weak and debilitated by my undiagnosed and untreated celiac disease that my life was in danger. The symptoms over twenty years included gastrointestinal problems, fibromyalgia, irritability, bone pain and more. The good news was that I finally found out what was wrong with me; the better news was finding out that the disease is completely manageable through dietary changes alone.–no medications, no surgeries, none of that stuff. Just don’t eat grains that contain the gluten protein, mainly wheat, barley and rye. That sounded really good to me.

Not so fast. While still in the hospital, I was really still very sick, and not really able to process the information. After a couple of days (in which I was already improving), it dawned on me that

Celiac Disease, on the Couch

stock-photo-3443895-depression-and-sorrow1-216x300[1]Kathleen (not her real name) came to counseling because of anxiety. After an intake, we identified several areas in her life that sounded like they were contributing to her difficulties. We started working with Cognitive Behavioral Therapy, a system that looks at the thought sequence you use, and where a distorted belief can be corrected and thereby relieve suffering.

After teaching her a series of formulas, she was able to apply the principles herself when not in the office with me. This is a very effective psychotherapy intervention, that is so useful that many insurance companies paying for counseling expect to see it as part of a treatment plan. But, it did not seem to offer Kathleen the relief I was expecting. So, we continued looking elsewhere in her life for the source and solution of her anxiety. If it wasn’t her thinking causing it, perhaps it was situational.

Were You Diagnosed with Gluten Sensitivity or Celiac Disease by a Doctor or Did You Figure It Out on Your Own?

do doctors understand gluten sensitivity or celiac diseaseIt is well documented that only a small minority of those with celiac disease are successfully diagnosed in a medical setting.

Gluten sensitivity, which we based on medical research and proposed in Recognizing Celiac Disease in 2007,  has only recently been accepted as a true medical condition. So we decided to hold an informal survey to see just how people are becoming gluten-free? How are they finding out that gluten sensitivity or celiac disease are the cause of their health problems and are doctors diagnosing them or are they figuring it out on their own?

We posted this question to our GlutenFreeWorks Facebook friends and here are their answers. Were YOU diagnosed by a doctor? Leave your comments below!

Who Needs a Gluten Test? Video by “Gluten Syndrome” Expert Dr. Rodney Ford Explains

Dr. Rodney Ford, pediatrician and author of The Gluten Syndrome, provides us with an excellent and easy-to-follow video that tells us how to know if we need a gluten test.

This short presentation explains which symptoms to look for and tells you the tests you need to to request to find out if gluten is making you sick.

Dr. Ford estimates up to one third of people with chronic diseases are being affected by gluten and sums up why people do not ask to be tested. “We are so used to being sick that we don’t know we’re sick.” People think they have always been this way, so they do not know to ask.

He then establishes a great litmus test to determine who should be tested – “People who are sick, tired or grumpy should be tested.”

Celiac Disease Public Service Announcement

[Editor’s Note: This video is from 2007, but it is still true. Celiac Disease research still lags other, less prevalent conditions. Yet, it is the easiest to treat, requiring a gluten-free diet and nutrient replenishment. The focus has been on the Gluten-Free Diet. Let’s shift it back.]

 

Doctors are missing over 95% of people with celiac disease – over 3 million in the United States.  That’s more people than autism or Type 1 Diabetes, yet celiac disease receives a fraction of the funding of these diseases.  Lives are being destroyed every day, when a simple change in diet could cure them.  Let’s get the word out…

Celiac Disease and Gluten Free Diet Educational Videos

Cheryl Harris Gluten Free Works

Finding out you have Celiac Disease is a big transition. Often it’s a good one that leads to feeling great, yet initially it’s a lot of information to take in at once to understand what you need to do for your health. Much of it is because we’re been eating one way for 15, 30, 50 or more years and it can be overwhelming to to instantly unlearn everything we’ve done and change overnight. Wouldn’t life be easier if you could take a doctor or dietitian home as a portable reminder of the basics? And so the Celiac Disease Video Project was born.

See below for videos of Dr. John Snyder, Chief of the Department of Gastroenterology at CNMC in DC, Dr. Gary Kaplan, Medical Director of Kaplan Center for Integrative Medicine and Cheryl Harris, MPH, RD Registered Dietitian and Nutritionist discussing testing, diagnosis and follow-up, eating a gluten-free diet and a short segment on when it’s not Celiac. Though there are an increasing number of videos out there on people’s stories of diagnosis and ways to make a gluten-free pie, this is the first of its kind to do a run-down of the medical and diet basics by healthcare professionals. The Celiac Sprue Association has been kind enough to support the project.

Gaining Closure Through a Letter: The Beautiful Side of Healing

This has been a post/letter which has been a work in progress for two years. For the past two years, I have had the new years resolution to send a letter to the 22 doctors who I had seen throughout the five years of misdiagnosis. After finally receiving a great report from my GI yesterday, it was time to put the finishing touches on this piece. It is something I felt I needed to do.

Not only to gain closure for myself, but as a way to spread awareness about gluten-sensitivity. The doctors need to know what the other side of the rainbow looks like, after what was a treacherous and long storm. 

Diagnosis and Testing

gluten sensitivity celiac disease diagnosisHow Is Celiac Disease Diagnosed?

Diagnosing Celiac Disease can be difficult and frustrating for both the patient and the doctor because each person is affected individually. With no definite set of symptoms to cause suspicion, the single most important step in getting a diagnosis of Celiac Disease is to recognize its myriad features.1

People who have any of the following situations should be evaluated for Celiac Disease:

  • Symptoms indicating nutritional deficiencies.
  • Unexplained digestive problems such as IBS, acid reflux, diarrhea/constipation, bloating, chronic abdominal pain.
  • Chronic skin disorders, especially when itchy.
  • Unexplained visual problems including poor night vision, dry eye, or cataracts.
  • An auto-immune disease like Type 1 Diabetes Mellitus or Sjogrens Syndrome.
  • A chronic disease like arthritis, migraine headache, or polyneuritis.
  • A relative who has Celiac Disease.
  • A relative who has Dermatitis Herpetiformis.
  • Frequent or long bouts of colds, bronchitis, and other respiratory infections.
  • Long recuperation from illness or surgery.
  • A history of tuberculosis. Non-Hodgkin’s lymphoma.
  • Cancer, especially of the digestive tract.

Very good diagnostic tests are available, but no one test can definitively diagnose or exclude Celiac Disease in every individual.2 And, because all diagnostic tests look for harmful effects of gluten, you must be eating gluten in your diet when any diagnostic test is performed. Tests may be inconclusive if you strictly eliminate gluten for longer than two weeks.  So if you think you may have Celiac Disease or feel better going without gluten for a week to 10 days, go get tested before continuing.

Steps to Celiac Disease Diagnosis

Sources:
  1. National Institutes of Health, ”National Institutes of Health Concensus Development Conference Statement, Celiac Disease,” August 9, 2004;1-14. [↩]
  2. Murray, J. ”The Widening Spectrum of Celiac Disease.” American Journal of Clinical Nutrition. Mar 1999;69(3):354-365. [↩]

Jennifer Esposito Forced to Leave Blue Bloods Due to Celiac Disease Diagnosis

According to Deadline, actor Jennifer Esposito is leaving Blue Bloods because of her celiac disease. Jennifer’s doctor is requiring her to work a reduced schedule after she collapsed on the set and that doesn’t fit into CBS’s plans for her character.

This is CBS’s take on the situation, so Jennifer Esposito took to her Twitter account to set the record straight.