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Negative Celiac test? You must read this! | 06.11.2013
It’s impossible for us the Co-op to discount the growing number of our member/owners who are gluten intolerant or have Celiac Disease. They take on a wide range of characteristics: those who NEVER eat gluten, those who try really hard not to eat gluten, those who just decrease the amount they eat…
For those who suspect gluten intolerance, the road to diagnosis, or even learning the difference between Celiac’s and gluten-intolerance can be very tricky. Because of its difficulty in detection, a negative test for Celiac’s may not even be a definitive conclusion.
Tracy Konoske, MS, RD of Healthy Lifestyles, MT, recognizes that a gluten-free lifestyle and getting an accurate diagnosis can be overwhelming and challenging. In her latest blog post, Tracy shares her road to a gluten-free lifestyle and breaks down the options for testing and what to do when the test is negative!
At GEM, we’ve worked to make it easier, and while we don’t have a particular gluten-free department here at the Co-op, we do carry hundreds of certified gluten-free products, all labeled on the shelf with a bright pink shelf tag.
Celiac Disease & Gluten Sensitivity | 03.01.2013
They’ve become household words, but if someone gluten sensitive was coming to dinner, would you know what to feed him/her? If you are the one who has been diagnosed with Celiac or gluten sensitivity, do you fully understand the pathology of each?
Celiac disease is an autoimmune condition, meaning the body’s own immune system attacks itself. Specifically, the immune system attacks the “villi” in the small intestine, the “arms” that reach out and grab nutrients as they pass through the digestive track. Celiac disease attacks and breaks off the arms. As a result of malabsorption and depleted nutrients, the body is trying to do normal physiological function on fumes.
Celiac disease now affects 1 in 133. Not many years ago, it was a one-page description in the medical text and doctors were told they would rarely see it in practice. A lot has changed, and fast.
1 in 8 people with Celiac disease have GI (gastro-intestinal) symptoms: gas, bloating, diarrhea, nausea, GI pain or cramping. The other 7 of 8 people may not have any GI symptoms and may present with joint pain, migraines, eczema, irritability, depression, clumsiness, difficulty balancing, neuropathy, infertility, fatigue (including iron or a B-vitamin deficiency), osteoporosis or changes to teeth. This list can also include weight gain or constipation – opposite of what we’d think when there is malabsorption. Because the symptoms can affect any organ system, it’s easy to miss. Symptoms of joint pain are addressed by the rheumatologist while the dentist talks to the patient about oral hygiene.
Celiac disease progresses on a spectrum. A person doesn’t go from healthy to “100% villous atrophy with crypt hyperplasia” overnight, stages progress from 1 to 4. If a person was tested for Celiac disease before Stage 4 is reached, a negative diagnosis might again be given.
Are there ramifications of all this negative diagnosis? You bet! Many people are out there eating a little or a lot of gluten because they were tested and told they did not have Celiac disease. Or maybe they never got tested; they just tried a gluten-free trial, felt better and mostly avoid gluten now.
The long-term consequence of either of these two scenarios is that individuals “cheat” and they continue to throw fuel on the autoimmune fire. It’s not the amount of gluten one eats; it’s the fact that gluten is the trigger and fires or “turns on” the immune system, which can set off the immune system for up to six weeks. If the autoimmune process isn’t turned down or off, the person could expect to have other autoimmune diseases in his/her lifetime! Cheating isn’t an option.
If Celiac disease is definitively ruled out via blood tests, a biopsy, and looking for the genetic markers, that is truly good news and the person would now be diagnosed with Non-Celiac Gluten Sensitivity. While the autoimmune process doesn’t seem to be in play in this diagnosis, eating gluten is still playing with fire.
Join me for a free workshop on the ins and outs of Celiac and gluten intolerance on Good Earth Market’s Gluten-Free Day Saturday, March 9 from noon-1pm. All gluten-free products in the store will be 20% off.
Tracy Konoske, MS RD, holds her Masters degree in Nutrition from Bastyr University, the “Harvard” of natural medicine. In addition, she has advanced training in functional medicine from the Institute for Functional Medicine. Tracy has a virtual private practice here in the Billings area – as such, she “sees” patients all over the state of Montana as she helps them identify the root cause of their health condition. Tracy’s specialties include: migraines and chronic headaches, irritable bowel syndrome, joint pain including fibromyalgia, and auto immune diseases including Celiac disease. You can find more information at www.healthylifestylesmt.com.
My Gluten-Free Story by Carl Solberg | 09.12.2012
Some twenty years ago, my frail, emaciated 120 pound frame forced me to struggle. Forcing myself, I would vomit several times getting into the car to drive to work. Usual activities, like mowing the grass, were very difficult. I would make one pass with the lawnmower and have to go inside and rest. Numerous tests showed nothing unusual, until a family practice physician finally told me, “I don’t know what is wrong, I suspect it is something in your diet, but we’ll send you to someone who can find out.” That someone happened to be Dr. Mark Rumans of the Deaconess Billings Clinic.
Dr. Rumans diligently completed his routine exam and scheduled a colonoscopy. His findings indicated that I had celiac disease. Dr. Rumans told me, “Lay off the bread and you will do just fine.” At this time much less was known about celiac disease, and I thought it was a rather rare disorder. I thought that I simply needed to cut back on my foods containing gluten. Thinking I was doing what was best, as long as gluten wasn’t the main ingredient in a food, I thought it would be fine if I consumed a little gluten. In fact, I wasn’t sure what gluten even was.
I cut back on eating gluten, but many baked foods were too inviting. I had the belief that eventually my body would again be able to tolerate gluten, but I simply had to give myself time to heal.
My gluten-ignorant life continued until I was diagnosed with an agent-orange related cancer from my previous Vietnam military duty. The surgery caused my body to again react. My celiac disease again “raised it ugly head.”
Some understanding co workers noticed my extreme agony and saved my life by taking me immediately to the Deaconess Billings Clinic. My body felt like it was on fire. At first I brushed it off by thinking that my problem would go away just as quickly as it started. By the time I reached the Deaconess Billings Clinic, I was too weak to transfer with out assistance from a wheel chair to an examining table. It felt as if there was a civil war going on inside me. After some testing, the ER physician said, “I am not sure what is going on down there, but I see a lot of inflammation so we are going to have to take you upstairs for immediate surgery.” It took anesthesia to relieve my intense pain.
After surgery, medical staff at the Deaconess Billings Clinic discovered that gluten had eaten a hole about the size of a pencil eraser in my small intestine. Surgeons removed several inches of intestine and spliced it up again. They did their best to control the peritonitis that ravaged my body. No food or drink allowed for days. I was told that if there was a problem, having food or drink could be fatal. No ice chips, no coffee, no nothing. This Norwegian likes to have his coffee, but all was forbidden.
Recovering at Deaconess Billings Clinic gave me some time to think. My first thoughts were, “I am going to quit leading a gluten-ignorant life.” While recuperating at home, I spent my days on the internet, trying to learn as much as I could about celiac disease and I tried to learn how I could learn to live a healthy gluten-free life. During my internet search I made some telephone contacts. When I was strong enough to get out of the house, I made some personal visits in my attempt to become more knowledgeable.
During one of my computer searches I found Montana Celiac Society on the internet and made a call to Jean Powell, the founder of the organization. She asked if I was interested in helping start a gluten-free support group inBillings. When she mentioned this, I was delighted knowing that others should never have to suffer the pain I had just suffered. I was hours away from death, and no one should have to go through that agony.
Now, feeling stronger, I made more contacts and more phone calls. The subject of all these conversations was always gluten – what is gluten-free and how can I learn more about ways I can stay healthy?
During my search in ways to stay healthy, I came in contact with a very knowledgeable staff person at Montana Harvest Health Food Store on 17th & Grand Avenue. This exceptional person, Joan Dannenberg, was very “gluten-smart.” We talked gluten-free healthy foods and places to purchase these foods. Our conversation soon turned to the subject of working on a gluten-free support group in our area. I could see Joan’s enthusiasm grow, and some weeks later we had our first support group meeting on a Saturday sitting in chairs in the middle of the gluten-free aisle at Montana Harvest. Joan and my goals were similar in nature. We both had an extreme desire to reach out to others and provide support and education for others who needed to live a gluten-free life in order to stay healthy.
Our “gluten-free walk” continued, our enthusiasm for educating others who suffered our health issues began to grow in numbers. We teamed up with Montana Celiac Society for advice and direction, and shortly thereafter we became members of the board and assisted serving in leadership positions.
Before realizing what was happening, our gluten-free support group, which was first sparked by my near death, had now reached places outside of Billings. Montana Celiac Society had a goal of bringing Dr. Allesso Fasano to Billings to speak at the Deaconess Billings Clinic. Our group rolled up it sleeves and went to work to see that Dr. Fassano could come. We realized that having the physician who heads up the Center for Celiac Research at the University of Maryland would be a huge asset to all of us. It would take money to do this, but that would not keep us from accomplishing this task. In the end, Dr. Fasano made a presentation at a packed conference room at the Deaconess Billings Clinic. Our group spent an eventful evening with Dr. Fasano and he was given a generous check by our organization to be used for celiac research.
Since its beginning in Billings, our leadership and members of our support group have placed educating members as its number one goal. In so doing, it always adheres to having programs which are highly worthwhile to everyone in attendance. In keeping up with these principles and goals, we have assisted people with gluten issues in Kalispell and have worked with them to start a gluten free support group. A number of Support Group people from Billings recently attended Kalispell’s first meeting. More than 50 people in Kalispell attended their first meeting. There were 74 people attending Kalispell’s last gluten free educational presentation. My goal is to now get similar support groups started in Missoula, Great Falls and other places in Montana. Why do we do this? We do this because I nearly died from gluten. Deaconess Billings Clinic saved my life, and no one should ever have to lead a gluten-ignorant life and experience the extreme pain that I had by not following a gluten-free diet.
Stay tuned for our monthly gluten-free blog! So what is this thing called Celiac Disease? I shall try to explain in layman’s terms in my next blog, “A Hidden Killler”.
Carl Solberg, president of the Montana Celiac Society, is passionate about educating people on a gluten-free lifestyle. The Montana Celiac Society offers information and support to those with Celiac disease, hosting conventions and regular support group meetings and providing other resources. For more information, visit their website at www.montanaceliacsociety.com. Stay tuned right here for a monthly blog from the Montana Celiac Society!
by Tracy Konoske, MS, RD
Nutritionist & Registered Dietitian
History of anemia?
Losing bone mineral density?
Suffer from joint or bone pain? Arthritis?
Already diagnosed with an auto-immune disease like Hashimoto’s thyroid, Type 1 Diabetes, auto-immune hepatitis, or auto-immune liver disease?
Dental enamel defects?
Infertile? Menstrual irregularities? Miscarriages?
Recurrent canker sores?
Skin lesions that aren’t really acne?
Weight loss? Weight gain?
Fatigue that napping just doesn’t solve?
Does your child have failure to thrive?
Quite a list isn’t it? It’s broad enough that almost anyone would answer “yes” to one or two answers. That’s because Celiac disease is now known to affect one in 133 people. It’s estimated that 3 million people have it, but only 5-10% are diagnosed.
The symptoms are broad as it can affect any or every organ system. No one knows which part of the medical text to put it in anymore because it is not just a GI (gastro-intestinal) disease. 50% of newly diagnosed Celiacs had NO GI symptoms!
Why is it spreading like wildfire?
Well, it’s not because we’re better at diagnosing it. Researcher Dr. Murray took stored blood from Army recruits, analyzed it, and found age-matched controls. According to him, Celiac disease has increased four-fold in the past 50 years. Celiac expert Dr. Fasano found that it’s doubling every 15 years and a five-fold increase.
Some proposed answers are leaky gut, GMO foods, composition of our gut bacteria, and more gluten in our food supply than in the past.
It takes a perfect storm to brew Celiac. First, one must have one of the two genes and 30-40% of our population does. Second, it takes a trigger, which is usually a stressful event, that temporarily alters gut permeability. Examples are puberty, food borne illness, pregnancy, trauma either emotional or physical, or just becoming elderly. Third, exposure to gluten. Which now is in just about everything you eat, so the with our stressful lives, and high exposure…the conditions are ripe.
What about all those non-Celiac folks who feel better on a gluten-free diet?
Non-Celiac Gluten Sensitivity (NCGS) affects 6% of our population and the only test is to rule out Celiac disease, and then do a trial gluten-free diet.
The caveat is that it is important to do due diligence and rule out Celiac first. Many go on a gluten-free diet and don’t bother with the testing. What’s wrong with that? Celiac is an auto-immune disease. It comes with real-life complications, including a risk of other auto-immune diseases, anemia, lymphoma’s, bone loss and more. We are still sorting out the truth but NCGS has not been known to be an auto immune disease although that is now changing. But, having the facts in place allows us as health care providers to treat and heal you accordingly. Guessing if you are risk for complications isn’t a good way to practice medicine.
The Bottom Line
If you take the 1% of our population who has Celiac, and the 6% who are NCGS, we have 21 million people who will feel better being gluten-free for life! No wonder this is such big business!!!
Gluten-free diets help many, many people, but anyone messing with the foundation of life should have expert help to avoid nutrient deficiencies and minimize complications later in life. The goal is to heal, not do more harm. There’s a lot to know and it’s not a field one can dabble in.
Tracy Konoske has a virtual private practice. She’s a different kind of dietitian and gets a different kind of result with her patients. She offers Medical Nutrition Therapy for those with chronic disease, including Celiac and NCGS. Join Tracy for a FREE workshop, “Celiac, Gluten Sensitivity and the Gluten-Free Diet” on our Gluten-Free Day, Saturday, June 16. Visit Tracy’s website at www.healthylifestylesmt.com