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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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CELIAC DX STORY: Valerie Bernes

Friday, March 02, 2007

"I grew up in Lorain, OH, and earned a Bachelor of Music degree from the Univ. of Cincinnati College Conservatory of Music. I played in a full-time professional orchestra for one year but found it was too stressful for me. So now I make my living as a secretary/admin. asst. and do music on the side. I also enjoy doing astrology and tarot readings."

In my mid-40s I was appalled by how fat I seemed to be getting, especially around the middle. Even strangers came up to me and asked if I was pregnant! I went on diets, but nothing ever seemed to help that midsection.

I think the way I discovered I had celiac disease was unusual. To be honest, I had never heard of it, but in 1997 I had a relationship with a man who, in short, dumped me for someone else. Looking back, I doubt it had anything to do with my body. At the time I felt devastated and thought it must be because I was "fat," so I decided to go on a starvation diet. For more than a week, all I had to eat was chicken broth (and the occasional piece of broccoli, celery or carrot). After that week, I was really feeling better.

Then my stepfather invited me to a clambake. There, I ate those delicious clams in clam broth sopped up with, of course, bread. Well, the next day I felt awful and came to the conclusion I must be allergic to wheat (had still never heard of celiac disease). In my own naive way I began avoiding obvious foods with wheat and again felt better.

Over the years, with experimentation, I found the other toxic grains and slowly became aware of the incredible amount of processed foods that contain small amounts of these "poisons." For a number of years I could tolerate small amounts. I could still go to restaurants and eat things that didn't obviously contain wheat, rye, barley or oats.

That's no longer the case. About 9 months ago I had to face the facts and go 100 percent gluten-free. That meant no more restaurants and no more social life. At least going out. That was hard for me because I'm single.

In addition to the gluten intolerance my last bout with reactions left me lactose intolerant as well, at least for the time being. It's been a learning experience ever since. I have learned a lot about contamination in certain products (still haven't found any chips I can eat as snacks - potato or corn) and I avoid distilled vinegar. Some people are adamant that distilled vinegar is acceptable for celiacs, but I haven't found that to be the case. I'm not going to argue with them. Maybe it is for them, but is certainly isn't for me. People aren't all the same so why should celiacs be?

I am grateful God let me know about celiac disease and allowed me a few more years on earth. I think my father had it, but never knew. He never stopped eating gluten and died from intestinal cancer at age 54. I am 53.

My hope is that more people become aware of this disease, especially food manufacturers, who could make our lives so much easier with appropriate labeling. And maybe, just maybe, some more restaurants might put a few gluten-free entrees on their menus :-)!

Maintaining a gluten-free diet isn't easy in this gluten-saturated society, but it can be done. And it's definitely worth it if you have celiac disease.

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

  


CELIAC DX STORY: Joy Moore

Wednesday, February 28, 2007

"I am 42 yars old, a wife of 18 years and a mother to a nine-year-old daughter, Amanda. I have worked the past two years as a Food Service Cafeteria Worker at Amanda's school. Imagine the challenge I live with daily as I cook and serve food to nearly 600 students each day. Hope this is encouraging you that a gluten-free diet is manageable with willpower, determination, and yes, even prayer."

My name is Joy Moore and I have celiac sprue disease. I have seen so many doctors, too numerous to count! It all began back in 1986 when I would complain about, you know, the typical symptoms: bloating, diarrhea, constipation, nausea, joint pain, and those nagging women issues.

Let me explain how a diagnosis came about after so many years. In November 2002, I had eaten some food that had been sitting out from the Thanksgiving meal (bad idea, don't do it). By December 5th I had been rushed to emergency room thinking I was having a heart attack. The doctors ruled out my heart. I thanked God! With no answers, I was released from the hospital. I went to my primary care doctor the very next day and discovered my white blood count was elevated.

After the first ten-day regiment of antibiotics I returned to the doctor feeling something was seriously wrong with me. A test had been run and an H. Pylori bacteria infection was the culprit. AHH MY TRIGGER!

More antibiotics AND a referral to a gastroenterologist followed. The endoscopy report came back to my primary care manager (quack, oh, I meant the doctor). He took out a scrap piece of paper and jotted down celiac sprue. He handed it to me and said, "Go look this up on the internet. I think it has to do with wheat." Needless to say he is no longer my doctor. The gastroenterologist confirmed celiac disease by biopsy and sent me off to see a nutritionist to start me on a gluten-free diet. Unfortunately she had never dealt with a celiac patient either. I guess what I am trying to say is that it is your body, your health, and your well-being. Be persistent and get the help you need.

A year has passed and sure I feel better since being on the gluten-free diet, but the damage the disease has caused over the years lingers on. I still suffer from joint pain, mood swings, and those female issues.

Let me end my story with a word of encouragement: sure some days are hard as I watch my family eat a Papa John's pizza (I can almost taste it) but I know the bit I don't take means another day of healing and improved health.

May God give you the strength and encouragement that you need each day to stay gluten-free. God bless.
End.

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

  


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