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UNCELIAC DX STORY: Matthew Irwin

Friday, March 23, 2007

[This is why you don't go gluten free without proper testing!]

From San Diego City Beat-March 21, 2007
"The fire down below"
How I discovered I had celiac disease and learned to live gluten-free
by Matthew Irwin

First, the coughing begins—just a scratchy throat. Then, burning cheeks and redness. Skin, tight and dry. Chest, blotchy. Breathing gets difficult. And, finally, panic.

For anyone suffering from severe allergies, the symptoms of anaphylaxis should be familiar. But having experienced it for the first time at 29 years old, I had a few urgent questions, such as: How did I have an allergic reaction while on medication that should have prevented it?

The prescription for Prednisone was my gastroenterologist’s latest attempt to treat my diarrhea and stomach cramps that felt like golf balls moving through my intestines. Instead, I spent two weeks cracked out and suddenly empathetic to menopausal women, not to mention angry that, again, he had ignored my request for a blood test to rule out celiac disease, a poorly understood, yet common, intestinal autoimmune disorder.

Celiac disease, also called celiac sprue, is a genetic condition that causes damage to the small intestines after its sufferer consumes gluten, a protein in common grains. According to a local celiac center, the disease often reveals itself through irritability (one of my lifelong traits), weight loss (check), “diarrhea with greasy stools” (check), and “abdominal cramping and discomfort” (check and check).

Though opinions vary, most experts agree that up to 1 percent of Americans have celiac, less than 4 percent of those people know about it, and the average delay in diagnosis is 11 years. And these numbers don’t include Americans affected by other forms of gluten sensitivity, which some experts believe is much higher.

Having suffered for only seven years, I’m below the national average, but I’m still unofficial, because I diagnosed myself, which at least one expert discourages. But the proof is in the pudding: I’ve been gluten-free for two years—the first two years in a long time I haven’t had frequent unpleasant symptoms. More important, my girlfriend doesn’t think I’m as much a cranky grouch as I used to be.

This is my story—one person’s struggle to understand why eating hurt, why his moods were unpredictable and why diagnosis was so difficult. I’ve had colonoscopy, small-intestine X-rays, an MRI and an endoscopy, the latter requiring a drug that encouraged me to reveal all my nasty transgressions and infidelities.

And when I conveyed this angle over the phone to local gluten-free advocate Danna Korn, I could almost hear her shaking her head: “I hear that every day, and it drives me nuts.”

Fifteen years ago, after being told repeatedly by doctors that nothing was wrong, Korn’s young son Tyler was diagnosed with celiac disease. Upset by a lack of information, she educated herself and wrote a book. Since then, the 44-year-old professional recruiter has written several books, including Living Gluten-Free For Dummies. She started a nonprofit for kids with celiac and has become an advocate for gluten-free lifestyles.

My symptoms probably began in college, most noticeably senior year, when I’d hurry out of parties and classrooms for the bathroom. But I shrugged it off: I’d been dealing with a failing relationship and impending graduation with a degree in poetry—class of 1998.

A family doctor diagnosed me with separation anxiety and offered a prescription for Prozac, but I refused, deciding instead to deal with it on my own, which, of course, meant that I drank a lot—so I figured excess was the reason for my three or four sit-down bathroom visits a day.

I moved to Wyoming and spent the next two years snowboarding, hiking and climbing in Jackson Hole. Life was good, but my digestion sucked. An internist tested me for parasites, and when the tests came back negative, she said that maybe I had irritable bowel syndrome.

For another year, I coped, occasionally eliminating foods from my diet: Milk went first, then eggs. Still, the symptoms continued. I returned to the internist, who again tested me for parasites, and again suggested IBS, so I requested a specialist referral.

A gastroenterologist in Idaho Falls said I was too young to have anything real—it was all in my head. (This diagnosis would become familiar over the next seven years.) I didn’t drive two hours in the snow over mountain passes to hear that nothing is wrong with me, I said. I had pain in my lower abdomen like a lead ball in my colon, and runny stools, three or more times a day.

He scheduled a colonoscopy, which found nothing. I walked away with the unpleasant memory of him inserting the scope before the anesthesia kicked in.

For Korn’s son, the diagnosis was much faster, but much more frightening. One-year-old Tyler got sick, and the family doctor told her he was fine.

He was not fine, she said. A second doctor and then a third—they all told her she was neurotic. Finally, a fourth doctor sent them to Children’s Hospital for “a bunch of tests.” They thought he had cystic fibrosis. They thought he had cancer. They didn’t know what he had, but they knew it was something. Finally, they tested him for celiac.

Physicians in Europe got hip to the disease years ago, Korn said, and when researchers came to the states for data, they didn’t find any. At first, they thought it might be a rare disease for Americans.

“If you’re not testing for it, you’re not going to find it,” Korn said.

Ask the average gastroenterologist the number of celiac patients they treat, and they’ll say one or two, she said. Then ask the same GI how many patients they’ve tested for celiac and the response will be the same: one or two.

When Korn began her research, information was scarce. She scoured medical libraries and talked to experts with one goal in mind: “I wanted Tyler to have a birthday party when he didn’t have to ask, “Can I eat this?”

She founded Raising Our Celiac Kids, or R.O.C.K., a celiac kids support group that originally consisted only of her family but later grew into the nation’s largest, with 100 chapters. (More on R.O.C.K. can be found at www.glutenfreedom.net.) Since then, a 2004 consensus report by the National Institutes of Health centralized much of the information about celiac disease.

Dr. Martin Kagnoff is a member of the NIH consensus committee. At the William K. Warren Medical Research Center for Celiac Disease at UCSD, he and a small team of investigators and clinicians study the disease, its symptoms and treatments. He said educating physicians and other clinicians about celiac disease and its various “atypical and silent presentations” should be a priority. This means doctors should not only be looking for chronic intestinal pain, but also for patients with relatives who suffer from celiac, as well as patients with iron-deficiency anemia, premature osteoporosis, vitamin deficiencies, delayed growth in children, abnormal liver function or Down’s syndrome.

Some of his patients in the clinics—UCSD’s Perlman Ambulatory Care Center and Children’s Hospital—have complications with neurological disorders, IBS and other autoimmune diseases, such as diabetes, thyroid disease and autoimmune hepatitis.

Many of the people Kagnoff sees are like me—undiagnosed, but have stopped eating gluten and feel better. In his office, I began to understand that Kagnoff does not recommend going gluten-free without a clear diagnosis, as self-diagnosis may not be accurate and can make later evaluation much more difficult.

When I moved to San Diego in 2003, I’d been looking for an answer for only about five years and I still hadn’t heard the words “celiac” or “gluten,” but my symptoms worsened, and I couldn’t eat without becoming distended and angry. Uninsured at that time, however, I put off the search.

Not until I started a new job with a good health plan did I resume the diagnostic process a year later. A new primary physician ran me through the parasite tests, again, and when the laboratory reported negative, again, he sent me to a gastroenterologist, who prescribed an MRI.

When I complained at work about the process, a coworker asked if I had been tested for celiac. Fifteen years ago, when she gave birth to her daughter, she suddenly and inexplicably lost weight and couldn’t move her bowels without diarrhea. My symptoms sounded familiar, she said, especially the lack of diagnosis.

Turns out, celiac remains dormant in many people until triggered by a traumatic event, like pregnancy, Korn said. Other triggers include surgery, a car accident and emotional distress, such as a divorce or, probably in my case, anxiety.

This information came in August 2005, and I was 29 years old. Seven years had passed since I began looking for answers and a lot of life had passed with it. I accepted that maybe some of the pain in my gut trickled down my spinal cord from my obsessive worrying about money, family, career—and though I found a sustainable job, started grad school, met a girl and believed that life was all-around pretty sweet, eating got worse. Every time I ate, illness and mood swings followed.

For someone with celiac, gluten causes nutrient-absorbing intestinal villi to flatten. Kagnoff compared it to shaving the shag off a shag carpet. The problem is that the small intestines can’t absorb nutrients.

Those of us fortunate to have the digestive symptoms may discover the disease sooner, but many sufferers live with other conditions. For this reason, Korn wants everyone to test for celiac disease and gluten sensitivity.

“The common misconception is that the symptoms are always [intestinal],” Korn said. “But most symptoms are headaches, fatigue, joint pain, depression, even infertility.”

But here’s where her work differs from Kagnoff’s: “No one can fully digest wheat,” she said. “And gluten sensitivity is much more common than celiac. So if celiac is more common than the common cold—which it is—then how many people live with gluten sensitivity?”

To answer this question, Korn pointed me to Dr. Kenneth Fine, who runs a clinical lab called EnteroLab (www.enterolab.com) and heads the nonprofit Intestinal Health Institute in Texas.

Ten years of research at EnteroLab has shown Fine that about 30 percent of healthy people and 50 to 70 percent of sick people have some form of gluten sensitivity, but not necessarily celiac disease.

Fine said that non-celiac gluten sensitivities can affect any part of the body when the immune system breaks gluten down and attacks it. To detect non-celiac gluten sensitivity, Fine developed a $100 fecal test, which he sent me, free of charge, in late February. A nurse in his office told me that the test—which Korn says is controversial—works by searching for gluten antibodies in the small intestines that absorb into the fecal matter.

I self-consciously relieved myself into a vat that looked like a margarine tub, sealed it in a bio-bag and mailed it back to Dallas.

Two years ago, after my GI told me that the MRI showed nothing, I asked him for two blood tests to rule out celiac. But he suggested an endoscopy first. During the procedure, he said, he would take a biopsy for the lab, and I agreed.

The NIH and Kagnoff still consider biopsy of the intestines the “gold standard” for a definitive diagnosis of celiac disease, but the NIH report also said that the first step to a diagnosis is a serologic (or antibody) test.

Locally, Prometheus Labs performs five serology tests that look for antibodies resulting from ingested gluten. The lab also performs a genetic test, which does not require gluten in the system but, rather, searches for irreversible genetic conditions. About one-third of Americans have the genetic marker for celiac disease, Tim Schofield of Prometheus said, but the presence of the gene does not confirm the disease. Korn and her husband, for example, both have the genetic marker, but only their son has the disease.

Though Prometheus declined to provide data on the number of celiac tests it performs or the ratio of positive outcomes, Schofield did say that more tests come in every year.

“There is a sea change in the awareness of celiac in the past three to four years,” Schofield said. “More in the past couple years, even.”

Unknown to my doctor, but well before I ever spoke to Schofield, I ordered the Prometheus celiac test kit before

my endoscopy.

The nurse said the endoscopy went well. For the procedure, the doctor needed to move me around easily, according to the patient release form. As such, I was given an anesthesia that basically deadened my short-term memory but kept me awake. In other words, while doctors had a tube down my throat to look for problems, I was coherent and responsive but also lobotomized. Therefore, my memory of what happened afterward isn’t clear, but I think it went like this: I woke up in the recovery room holding photographs and had asked for my girlfriend. I may have been alone, and it could have been seconds, or it could have been an hour when she finally walked in.

“What am I doing with these photos?” I wanted to know.

“Don’t you remember?” my

girlfriend asked.

“What are they?” I might have said.

“They’re of your esophagus,” the nurse said. “You asked for them during the procedure. The doctor showed you the screen and you asked for copies. Don’t worry, the drugs will wear off.

“Don’t worry,” the nurse added. “Everything you said is between us.”

I still don’t know what I said in that operating room, or if I’ve given an accurate account from the recovery room, and in his office, my gastroenterologist said he didn’t remember or wasn’t paying attention. “I have to admit, though” he said, “that I didn’t test you for celiac, but I do think I found the trouble. You have eosinophilic esophagitis.” He wrote it down on a prescription pad and explained that some kind of allergy or autoimmune disease that caused swelling in my esophagus probably also affected my intestines.

Whereas allergies cause a hypersensitive immune system to attack allergens like it would attack a cold virus, Korn said, autoimmune diseases antagonize the immune system to attack tissue when a “foreign invader,” such as gluten, comes around. An autoimmune disease, such as celiac, causes the body to attack itself.

“Could esopho-whatever come from celiac?” I asked my GI.

His annoyance showed. I had done my own research, and he didn’t appreciate it. His expensive education won out against my Internet research.

“It’s possible,” he said, “but I’d like to try steroids first and see what happens.”

I accepted—two 10-milligram pills of Prednisone by mouth for a week and then a reduction of the dose by half a pill each week until finished.

Having begun the graduate creative writing program at San Diego State University that year, I had due a 20-page report on the representation of truth in The Adventures of Tom Sawyer. Though I took an extra day off work and closed my social calendar for the weekend to write, I spent the time impatient, jittery and unfocused—basically, cracked-out from the pills.

A week later, while eating Mexican food and drinking margaritas with a friend, I started coughing, and my throat got scratchy. My cheeks burned and turned red. My skin got tight and dry, my chest blotchy, my breathing constricted, and my heartbeat increased. I panicked and called my girlfriend to pick me up. She dosed me with Benadryl and covered my body in cold wet towels. I counted the ticks of my heart against the ticks from the ceiling fan until I finally fell asleep.

With my gastroenterologist out of town, I spoke to his baffled colleague, who said steroids should have prevented that reaction, but since they didn’t, I should quit taking them.

I never sent in the kit from Prometheus because of the cost, then $600, plus the cost of the lab to draw the blood. For my health insurance to cover testing, I would have to demonstrate that the tests, or similar ones, could not be performed by a laboratory in its network.

Though I had sworn not to return to my gastroenterologist, I needed him to move ahead with the kit. Attempts to switch doctors failed when my HMO referred me over and again to specialists in the same office. So, as I stood in my GI’s office, again requesting a celiac test, I was prepared for his refusal. He opened a big book in front of me and said he would do some research over the weekend and call me. Then, with my final request, he wrote a prescription for a tTG test—one of the five serology tests Prometheus uses to locate gluten antibodies—in his office’s lab.

“I haven’t eaten gluten in a couple weeks,” I said. “Do I need it in my system for the test to work?”

“No,” he said.

Wrong. Schofield, Korn and Kagnoff all said gluten must be in the digestive system for a serology test to be accurate.

Instead of using my gastroenterologist’s lab, I took the ball and ran. He had mentioned allergies, so I went to an allergist, who diagnosed allergies to dairy, eggs and corn. Corn, in corn starch, corn syrup, high fructose corn syrup—as in margarita mix, as in what I had been drinking with corn tortilla chips when I first experienced anaphylaxis.

Margaritas and tortilla chips have been two regular parts of my diet since before I could drink legally, and I’ve never reacted to either prior to the steroids. But I’m not a doctor, so what do I know? It was probably a coincidence.

The allergist gave me two choices: avoid allergens or begin immunotherapy, which involves one $15 shot every week until the symptoms go away, which could be years. I chose avoidance.

And what about celiac and gluten sensitivity? Not his specialty, he said, but if avoiding gluten makes me feel better, stay away from it, too.

Most people I know don’t understand what gluten-free means. It means no gluten. None. No wheat, barely or rye. No bread. No pasta. No pizza, subs or beer. And it doesn’t end there. A list on www.glutenfreeinsd.com says to avoid malt, spelt, durum, semolina, bulgur, cake flour, matzo, matzah, couscous, wheat starch, modified wheat starch, hydrolyzed wheat protein and more.

The nonprofit group also warns against “natural flavorings,” dextrin, seasonings, processed cheese, flavored yogurts, alcoholic beverages (fortunately this doesn’t include wine) and soy sauce.

I haven’t even touched on cross-contamination during food processing or preparation (an issue at restaurants) or the many pharmaceutical drugs that use gluten as a binder. I also have the additional displeasure of avoiding corn and all its derivatives that exist in many gluten-free foods.

Which brings me to the favorite question of friends and coworkers who do not understand or experience problems with food: What the hell do you eat?

For awhile, I ate nothing—maybe one meal a day because I didn’t want to get sick. I lost weight, so much that a concerned professor remarked on the translucence of my skin. But a clinical nutritionist taught me how to eat all over again.

Allergies and autoimmune diseases can be aggravated by poor nutrition, which is why Kagnoff frowns on self-diagnosis. When people stop eating gluten, he said, they tend to load up on carbohydrates and may not set a nutritionally adequate diet. Kagnoff suggested that many people benefit from a nutritionist consult—so he keeps a nutritionist on staff.

My nutritionist suggested yams and sweet potatoes for breakfast, rice for dinner with fresh meats and vegetables, especially spinach for the iron, and maybe a daily supplement. Throughout the day, she said, I should eat handfuls of nuts and I should think about taking pro-biotics (digestive bacteria) to replace what I’d lost from diarrhea. At restaurants, she said—better yet, avoid restaurants.

If I ate right—in other words, filled up on the nutrients—the corn and dairy allergies might fizzle or go away altogether.

Yes, finding food to eat is frustrating. The pain and tests and unanswered questions have been frustrating since 1998. But having some idea, as unofficial as it is, feels good.

Then, on March 13, came the results of the controversial fecal test I did with Fine at EnteroLab: “Antibody was elevated, indicating that you have active dietary gluten sensitivity,” the e-mail said. It recommended a “strict and permanent” gluten-free diet.

Kagnoff refused to comment on the fecal test or the results and suggested, nonetheless, that I get a genetic test to look for the celiac marker. If I have it, he said, I should go back on gluten and get a biopsy, but the amount of time it may take for the effects to show again is indeterminate. It may be next week; it may be in six months.

In San Diego, awareness about Celiac disease is growing.

The website www.glutenfreeinsd.com is the first stop. Gluten Free in San Diego publishes a member-provided list of local gluten-free restaurants, as well as information on gluten-free drugs and support groups like Korn’s R.O.C.K., which holds regular meetings.

Whole Foods has many gluten-free products, often hosts gluten-free days and its nutrition kiosk prints a list of foods and ingredients to avoid.

Korn’s Living Gluten-Free For Dummies is an encyclopedia of celiac disease and gluten sensitivity, written clearly enough for anyone to arm himself against his doctor, however educated his doctor may be.

“The coolest thing is the treatment for celiac is a gluten-free diet, which is best for you anyway,” Korn said.

Before you stop eating gluten, get tested and be persistent with your doctor. Don’t wing it, as I have. Living without a diagnosis is an excuse to slip, an excuse that always ends with me going home early and spending the night on the toilet. But the opposite—waiting—could be worse.

“For celiacs, feeding them gluten is like feeding them rat poison,” Korn said. “You could be setting yourself up for other, worse, conditions.”

03-21-07


© 2007 Southland Publishing, All Rights Reserved

  


CELIAC DX STORY: R. Jean Powell

Sunday, March 04, 2007

"In 1991 I was formally diagnosed with celiac disease and began my dedicated work with Montana Celiac patients. In collaboration with Lily Patten and Eloise Faber, Montana Celiac Society was born, with a founding membership of seven. The quarterly newsletter, Gluten-Free Friends, was founded in 1994 when I became editor. Circulation today is 620 and growing. This number includes over 550 subscribing families and nearly 50 clinics, hospitals and medical personnel in Montana who receive complimentary issues as part of our drive to educate."

My mother was a classic chronic celiac, not diagnosed until two years before her death at 83, when I was diagnosed. The ancestral trail led to an Irish great grandmother who died in her late forties of "stomach trouble." There were four siblings in my mom's family, and in retrospect we know that only my Aunt Addie escaped the celiac genes. My grandfather was the legendary "skipped generation."

I have two daughters, a daughter-in-law, and a grandchild who have celiac disease. I also have one son who, at forty, remains alert to the possibility of inheriting the gene.

I am a native Montanan who was diagnosed in 1981 with multiple sclerosis. In the next 10 years, I became gradually more ill with puzzling symptoms unrelated to my MS. Bedridden by 1990, I developed severe diarrhea. Researching the causes of the many symptoms I was experiencing, I was led again and again to celiac disease and was referred to a skeptical gastroenterologist. Displaying typical crisis symptoms, showing an immediate response to the diet, and with a generations-long genetic history of comparable family health problems, I was formally diagnosed with celiac disease. I am healthy today, but was left with a permanent walking disability.

Grief is a normal reaction to losses in one's life, but the power of normal grief can be overlooked by family, friends, even physicians after patients receive a specific diagnosis of celiac disease.

If you were fortunate to have been given a diagnosis if celiac then eventually you will come to terms with your topsy-turvy new universe and lifestyle. But first you must deal with your bereavement. You are not the person you thought you were, and you grieve for your lost self. You've lost years of good health, opportunities, and peace of mind. Your family history may include pointless tragedies and unnecessary early deaths. You flounder your feelings of anger, even rage, which prevent a sense of well-being. To top it off, you wonder how you can survive without bread, the staff of life. You're scared ...

If you had been very ill, perhaps for years, the relief at feeling better will soften the edges of your anguish, but grieving is a process each diagnosed celiac person must experience. As we wind our individual ways through the normal stages of grief that range from shock, anger, denial, numbness, sadness to a final appreciative acceptance, we need reassurance that one day soon we will approach our special, and peculiar, circumstances with gratitude.

This journey can take as long as two years, but should grief remain unacknowledged, it can turn into habitual depression. So be kind and loving to your own sadness or it may sneak up and bite you with unexpected small sorrows throughout your life.

Cherish the reality: no surgery, no expensive medication, no chemical therapy, but the avoidance of wheat, rye, and barley and oats is the treatment prescribed. With conscientious management, your health will rebound. It is your second chance to live optimistically, expressing hope and gratitude while enjoying a multitude of blessings that include a very good diet, gluten-free!

From: A PERSONAL TOUCH ON CELIAC DISEASE: The #1 Misdiagnosed Intestinal Disorder.

  


CELIAC DX STORY: Carman Theis

Saturday, March 03, 2007

"Mild mannered computer programmer by day, international dancer by night. I work full time developing database programs for the Internet. I also have two side businesses, one as a professional belly dancer, one as an importer and reseller of accessories for those the dance community. It is frightening to know that even at its worst, my illness went completely unnoticed to those who were the closest in my life. I was completely on my own until very recently, with noone to help me with the day to day issues, except for the growing celiac community on the Internet. Fortunately through my dance I found the self-awarenss, strength and persistence to recognize something was seriously wrong, then to find the solution, and finally to make the dramatic life changes necessary for recovery. I would not be alive today if it were not for my dance."

You never know how sick you are until you start to get better. That pretty much sums up my whole story. Three years ago I made my first trip to Cairo for two weeks of shopping, dancing, and mingling with the local culture. it was an extraordinary trip, made all the more exciting by the fact my friend and I traveled on our own without the benefit of a tour group or guide. It was not until our last day that I fell prey to the usual traveler's sickness. On my return, I did the usual thing, I waited a few days for it to subside, and then I made an appt with my doctors. I was given a course of antibiotics and told not to worry, "It will go away in time." But it never did.

Meanwhile, I started getting compliments on my new relaxed, naturally languid style of dancing that was very "Egyptian." It was very different from my previously very energetic Turkish-inspired style. I thought it was because I learned how to feel the music more. The real issue was I physically had less energy, and didn't notice it. All I knew is I often felt so depressed for no apparent reason that even waking up in the morning was an effort. I literally lived day-to-day. I didn't care to make goals for the future.

Still my stomach issues persisted. I patiently waited for them to resolve. Finally, I had an epiphany moment. An SUV almost ran me off the road on Christmas Eve. My car was totaled, but I walked away with only a bump on my wrist. I realized I had to take care of myself because no one else would.

Thus began a journey that changed my life in ways I would never have imagined. I returned to my doctors to take care of my health issues. Two years earlier I had been diagnosed with rosacea, a skin condition that was causing progressive damage to the skin on my face that could not be hidden by make-up. This was hard to deal with as I believed I may never be able to realize my dreams as a performer.

I was determined to not let this top me and started doing some research. I learned a change in diet could reverse this condition and control it enough that I could stop the daily medications. I was ecstatic. The diet was very restrictive. You start by eating no more than 20 grams of carbs a day for the first 30 days, then work to find your tolerance level. No sugars in any form. No bread or pasta. No more spicy food. No hot or cold food or beverages. I needed to avoid anything that caused my face to blush after eating it. Add to that behavior changes such as: avoiding hot showers, sun, outdoor exposure, and exercise. But I was determined. I wanted to continue performing! I returned to my determatologist and shared my research with her. She felt it was worth a try!

I also returned to my primary care physician regarding my lingering stomach issues. We did test after test with no solution. I was convinced I had picked up a bug in Cairo. But then something amazing happened. A month after I changed to my rosacea diet, my stomach issues started to resolve. I shared this information with my doctor, and he encouraged me to eat whatever way made me feel better. He assured me that the changes in my diet would not affect his tests.

As time went on, I researched to learn why my diet was affecting my stomach so much. I tried a low glycemic diet. Still had periodic issues. then I learned about gluten intolerance and celiac disease. I tried to discuss the idea I might be gluten intolerant with my doctor, but he said it was not possible because I was not losing weight. He also said he did that test as part of the first round of tests. He hinted the dietary affect could be all in my head, and gave me a sample pack of Metamucil to try.

I wasn't convinced my doctor was right, so I made a point of getting a copy of the tests and I checked the hospital records myself. I was very angry to see he did not do the correct tests. The celiac blood panel consists of four tests. He only did one, the one which tests for short term (recent) exposure to gluten. Plus, the hospital record said right on the test description, a change in diet to exclude gluten will affect the results.

I was livid. At the time of the test I had been off all obvious forms of gluten (bread, pasta, cookies, cakes, etc) for at least a month. I was already feeling improvement on the diet because my body was healing. By the time I saw the hospital record, I had been off gluten for several months. Yet, he reassured me on three separate occasions a change in diet would not affect the test results. Add to that his offhand comment that it was all in my head. He wast trying to treat me for a condition he knew nothing about, pretending he knew what he was doing. I discovered the Internet celiac community, and learned a great deal. However the doctor dismissed any information I found through my research when I brought it up for discussion.

Time went on as I endured medical test after test. I quickly learned I had to take charge of my own case. Suddently at month five I woke up. I felt better. I had a brain! I could actually work a full day without a nap in the middle. I could think clearly, as if someone had swept all the cobwebs out of my brain. I could focus on complicated things. I started to dream of the future.

At my last appointment with the doctor, he handed down a diagnosis of IBS. Many times this is a diagnosis given when a doctor can't figure out what is wrong, as in my case. I insisted on a referral to a gastrointestinal specialist, and he promptly gave me one. My new doctor ws almost as dismissive (at that time celiac was thought to be extremely rare in the U.S., at less than 1 in 3000). I was almost in tears as I told him my case had been mishandled from the start. He started asking questions about my observations and my family history. He concluded that indeed I seemed to be at least gluten sensitive, and ordered all the correct tests to find out. At our next appt I reminded him, even as I ws going under sedation for the endoscopy, that I had been off gluten for at least eight months and experienced many signs of recovery. It was unlikely he would find any obvious damage to my system. As expected, the endoscopy and all four blood tests came up negative. But the gastroeneterologist maintained I was obviously gluten sensitive and should remain on a gluten-free diet.

But something was not quite right. I still reacted periodically to foods manufactured specifically to be gluten-free. I went to see an allergist to figure out why. My skin prick tests came up negative. I was advised to keep a food diary and try an elimination diet to identify the offending foods. So I started my rotation elimination diet. This is a very difficult task that most fail, but I was determined. I learned over time I could not tolerate dairy, soy, or eggs. I've also learned it is common for celiacs to have additional food reactions as a direct result of the damage to their system. Some reactions may go away with time, and some may be an issue forever. My allergist was so impressed with my rotation elimination diet and food diary system, she asked for a copy to use as an example for other patients. She later asked for my restaurant cards as well.

I woke up one morning realizing for the first time in my life my tummy was becoming flat. This was amazing. I thought I would live life always having to accomodate a rounded bulging lower belly in my costume designs. I even once considered cosmetic surgery to correct it. And here it was almost gone! I've even noticed dramatic differences in my energy and flexibility when I am clear of food reactions. My dermatologist (remember her?) remarked my facial skin was improving so much that I should continue whatever I was doing. My medication dosage was dropped twice. If I continue to improve, perhaps one day I will be able to stop the medications entirely. It was amazing that a "simple" change in diet could improve so many seemingly unrelated things. I felt reborn. I was excited to be alive. I felt like I had a second chance to achieve my dreams.

The changes have been profound. I can no longer eat in restaurants without anxiety. I can no longer trust others to prepare foods for me. I need to be careful to always wash my hands before touching food I plan to eat. I can't lick stamps and envelopes. I had to replace all of the spices in my kitchen as well as most of the food and several pans and cooking utensils. I had to learn to read ingredients not only in foods, but also medications, cosmetics and household products. I had to learn not to trust ingredient lists because they are often incomplete. I have to be very careful around children. I have to be very careful not to eat anything risky for at least four days before a performance. Every time I eat, do makeup, or pay bills, it is an opportunity to poison myself. A single molecule of contamination can make me ill for a week. Continued contamination can even kill me.

But life is good. I am working with a new personal trainer to regain the strength and endurance I lost in my illness, as well as develop muscle tone in places I never dreamed possible. For once in my life, I have that perfect body, the body perfect for me. I never could have done it if it weren't for my dancing. Something about having to look gorgeous in a revealing costume, drag myself out the door, bring happiness to others and dance my cares away on a regular basis made it so much more crucial to persist at finding the solution to my health issues. Something about having to do this every single weekend made it possible to follow my new diet long enough to heal and realize the benefits of these restrictions for their own merits.

If it weren't for my belly dancing, I would probably not be alive today. And for once in my life, I am truly alive.

From: A PERSONAL TOUCH ON CELIAC DISEASE: The #1 Misdiagnosed Intestinal Disorder.

  


CELIAC DX STORY: Ashley Reynolds-Rasmussen

Saturday, March 03, 2007

"I am a newlywed living in Columbia, MO. A recent college graduate, I enjoy going to flea markets, antique malls, and working with children.

I would like to dedicate this article to my grandmother, Jean Henry, who I've always had a special connection with. I would also like to thank everyone who has embraced me during years of struggling with my health."

Before I start giving you advice and sharing my story, I should tell you a little about myself. My name is Ashley Reynolds-Rasmussen and I am 22 years old. I have been struggling with digestive problems for almost 15 years dealing with a very wide range of symptoms; everything from heartburn to diarrhea and severe vomiting which forced me to be put on a feeding tube. I have been through an entire collection of testing that is out there for digestive problems. Some of them multiple times. Over the course of all this testing, I have been diagnosed with no less than 15 diseases and conditions. However, I did not get a correct diagnosis of celiac disease until June 2002, by a doctor at the Mayo Clinic. I feel I have experienced much more in my 22 years of life than most people have in 80.

Each of us has our struggles. Some of us struggle with our weight, some of us struggle with money, and some of us struggle with back problems. What millions struggle with, but yet never seem to talk about, are digestive problems.

Words such as diarrhea and stomach cramps are almost taboo in thousands of homes across America. With that being said, millions of people are suffering in silence and have nowhere to turn. Those of us who suffer from digestive problems whether it be weekly, monthly or daily, need to learn to speak out about our problems, and bring awareness to them. Awareness is what has scientists working on a cure for cancer and it is what will someday bring a cure to those of us suffering from celiac and other digestive problems.

The most simplistic piece of advice I have received since being diagnosed with celiac is also what I now think is most important for newly diagnosed celiacs to hear. One molecule of gluten is the same as 10,000 molecules. Take this statement as literally as it sounds. I have had experiences where my meal at a restaurant is completely gluten-free except for the bread that comes with it. I have learned the hard way you cannot simply take the bread off your plate when your order arrives. You must specifically order your meal with no bread. The bread must never touch your plate. If it does, you can have experiences like I have had, where you are sick by the time you leave the restaurant. This can get hard at restaurants where they think you just don't "like" bread. You must be strong and strict with your words and make it clear to them that no bread can touch your plate.

To take this advice further, something as small as stirring glutenous pasta with one spoon and then stirring gluten-free pasta with the same spoon, can make you sick. Treat gluten like it is, a deadly poison, and do all you can to not ingest any of it. Even if you are unable to see any gluten, it could be there. One molecule is very small!

The people you surround yourself with are an essential part of your recovery and your success in dealing and living with this disease. I have been blessed with my new husband. Bryan rarely eats foods with gluten around me. He is more than willing to try new gluten-free foods with me and to help me cook them. He accepts the fact I am not able to eat out ANYwhere we want and food is something I have to be constantly aware of. All of this has been a huge help and part of my success in staying gluten-free.

Every celiac deserves a spouse or parent just like Bryan to support them and love them. There are people in my life that will still invite me to an all gluten-containing meal and who are not willing to understand the impact gluten has on my health. These people are not respectful of me and therefore, not healthy for my recovery.

Something else that has taken me almost 15 years to understand and believe is having a digestive disease like celiac is no different than being in a wheelchair or having some other condition that requires accommodations to be made. If someone in your family is in a wheelchair, you wouldn't take them to a non-handicapped accessible restaurant to eat. The same can be said about someone with celiac. Even though I spread the word to friends and family about celiac and exactly what it is, some family members still invited me to eat out at an Italian restaurant. I went along, not having the courage to speak up for myself and sat through dinner with an empty plate. In retrospect, I should have never put myself in that situation. I should have spoken up.

Finally, there are people who say we should not let this disease control our lives. I used to believe that, but now I believe we SHOULD. We must follow its strict rules and by following those rules we can finally start to feel normal again. We should change our lives and habits to make them gluten-free. We must also remember the positive impact this disease has made upon our lives. It is easy for us to only remember the negatives when smelling freshly cooked cinnamon rolls or driving past a fast-food restaurant. This disease has helped to make me who I am today and I am proud of that person.

From: A PERSONAL TOUCH ON CELIAC DISEASE: The #1 Misdiagnosed Intestinal Disorder.

  


CELIAC DX STORY: Valerie Wells

Friday, March 02, 2007

"I am the mother of four adult sons, and grandmother of two. I have a passion for health issues especially when it comes to diet and natural approaches to healing. I work part time for an ear, nose and throat surgeon, but my real "job" is volunteering my time and energy to helping others find solutions for difficult health challenges."

I'm a registered nurse with a conventional medical background, but my experiences with conventional and alternative medicine have caused me to become passionate about "alternative" medicine. I suffered for ten years with a mysterious illness that at times was erroneously labeled FIBROMYALGIA, DEPRESSION, 'STRESS,' IBS, and I secretely suspect many doctors considered me a hypochondriac.

Some years ago, I started a low carb diet for what I self-diagnosed as carb intolerance. I got better. When I reintroduced bread, I got worse. My doctor said, "So don't eat bread." Gee thanks, doc. That visit was certainly worth $60!

I began to investigate celiac disease. I attempted a gluten challenge in preparation for a conventional celiac work up but was too ill to tolerate it for more than just a few days. Of course, my conventional testing for celiac disease came out negative. So I went ahead and ordered the complete gluten sensitivity panel from EnteroLab in Dallas, TX.

Four physicians agreed that because EnteroLab tests revealed I carried two copies of the genes that predispose for celiac disease, and I can't tolerate gluten in any form, I probably had celiac disease. But since there's no "hard diagnostic evidence," I'm simply labeled "gluten intolerant."

Even after beginning the traditional gluten-free diet, I still did not recover fully. It took the help of a skilled naturopath and a year of intense "alternative" treatments to stop the downward spiral of my declining health. Conventional medicine completely failed to help me, yet they are the ones who received the bulk of my health care dollars.

I consider my life rescued by "alternative" medicine. I appreciate doctors who have the guts to follow their convictions regardless of peer approval. These are my heroes: people who have largely been rejected by their more conventional peers, are often called "quacks," suffered financial losses because of it, but have each in some way contributed to my family's healing and the healing of thousands of othes. These are the REAL doctors who have broken the mold and learned to think outside the rigid box of conventional medicine in order to become world class healers. Most conventional doctors will have a comfortable retirement, but the real healer's work and contribution to society lives on long after they are dead and buried.

When conventional medicine fails you, it's really valuable to have alternatives. In fact, most of us would probably be better off if we started out with alternative medicine in the first place!

  
  Member Comments About This Blog Post:

DOTSLADY 3/15/2007 2:32PM

    Bluecoat - I can't seem to link to your page (it comes back to mine), nor can I find you in the directory. I think if you look for a D.O. you might have some luck with "alternative" doctors who treat whole body approach to health.

Also, visit www.enterolab.com. Understand that this is controversial in the celiac community. Visit www.glutensensitivity.net to understand this issue (particularly the "primer" link at the top.) Some people are big believers, others are not. Personally, I'd like someone with no health issues to submit their stool and see what happens.

Good luck with the results and your journey to a healthier you.
Angel

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BLUECOAT 3/15/2007 1:55PM

  I just discovered after years of problems that what I have may be celica disease. I also was labled with all the erroneously lables that Valerie Wells was labled with, including probably hypochondriac. I just had some blood work done and if comes up negative I would like to know how I can get ahold of Enterolab in Dallas,Tx. and or a skilled naturopath. Also enlighten me on what" alternative"medicine. Thanks a bunch, Stella

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