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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.



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.

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


CELIAC DX STORY: Jeanne Donnelly

Wednesday, February 28, 2007

"I am the mother of two teenage children (both recently diagnosed with celiac disease). I manage an International Student Exchange program based in New Jersey. My hobbies include writing fiction and painting and I hold a black belt in Karate."

Do I have celiac disease? I believe so. As a matter of fact I made myself very sick trying to prove it. What can I say? I was desperate! I spent the past 25 years doing everything the doctors told me and I was getting sicker instead of better. All I concentrated on was eating healthy and doing anything that promised to settle my stomach. Nothing worked. Every doctor I complained to ran a few tests and said I probably had IBS. Their advice was lose weight and watch what I eat. Easy for them to say.

Since it wasn't the "in bed, out of work, desperately ill" kind of sick (yet!), I did my best to manage daily life. For the most part my family understood I had a "sensitive stomach" and learned to live with it, but I knew it was slowly getting worse and I was getting scared. Finally, I came to the point where I would just break down and pray to God, "I don't care what it is, just give me an answer. Any answer!"

When I first explained to doctors that I seemed to be always in the bathroom with severe nausea, stomach cramps, gas, and bloating they said, "Must be something you ate." To which I'd answer, "Everyday?" and they would just shrug their shoulders. It wasn't like I was dying, losing vast amounts of weight or exhibiting symptoms that would raise the red flag, but I was in pain and embarrassed. I don't think the doctors realized what it took for me to come forward with my complaints. As before, I left the doctor's office without any answers and went on with life, managing it as best I could.

One minute I could feel fine and the next I would be overcome with cramps. Some days I could barely manage to leave the house. It got so bad I would just not eat as I tried to "shut down" the digestive process.

Doctors kept saying IBS. Frankly, I didn't think that was much of a diagnosis. I mean, I already knew my bowels were irritated! What causes it? What can I do about it?

I was told again, "everyone gets it." Watch what you eat, avoid junk food, alcohol, etc. Yeah right, I'd been trying that for years and it didn't work. One day I'd eat something and be fine, the next day I'd eat the same thing and get sick. What did that tell me? I'd keep food diaries, take vitamins (even those made me nauseous) and on and on but I wasn't feeling any better.

Finally, I resigned myself to carrying a pack of Imodium in my purse wherever I went. It was so bad that everything I ate caused pain. If I had to do any traveling I would just not eat the day before or the day of the trip. Everywhere I went I just resigned myself to not eat. Once I got home and felt safe I would be so hungry I would stuff everything I could find into my mouth. Of course, that would make me sick as a dog.

My biggest question was why could I eat something one day and be fine, then eat it a week later and be extremely sick? The medical community answered with "It's IBS." I know the real answer now. It's because different brand names use different ingredients. One burger restaurant may add wheat, the other might not.

Through the years I developed other problems. Lethargy made me go back to the doctor and after blood tests, I was diagnosed hypothyroid. The medication for this gave me more energy but did nothing for my IBS.

Scourge of my life. When I complained about having rough, blister-like breakouts on the back of my legs and arms I was told it was either eczema or winter dry skin. The recommendation was to use moisturizer and someone even told me to take vitamin E. None of this healed my skin but it did ease the breakouts a bit.

Since the IBS was an even bigger problem I pushed these stressful problems to the back of my mind and tried to find food I could eat. Everything now was making me sick. During one of my normal thyroid checkups I again mentioned the problems with my stomach. And the fact that even a plain old slice of bread made me nauseous. "How could that be?" I cried. "Bread was what you give to sick people!"

The doctor stopped and looked at me for a moment then told me about his mother who had celiac disease. He told me I probably didn't have it because of my weight (5' 6" and 160 lbs) and people with celiac are very thin. When I pressed him for more information he wrote down the name and told me to look it up on the internet. He still doubted I had it.

At this point in my life I was desperate for an answer and I prayed to God everyday that he would send me a clue as to what was tormenting me. Could this be it? I logged onto my computer first chance I got and started reading everything could find on this disease.

I started looking into how many things in our everyday life contain gluten. Bread, cereals, pasta, pizza, and cakes were the obvious sources but I was soon to learn gluten is mixed into almost all processed foods. I immediately started a quest to get gluten out of my diet.

It was a lot harder than I ever suspected. Ninety percent of soups, canned foods, and prepared foods on the market contain gluten. It is used in some medicines, most sauces, spices (wheat flour is sometimes used to prevent clumping), modified food starch (food starch in the USA is supposed to be corn but when you add the word "modified" then wheat could be added), cough drops, stamps, and envelope glue. For a while it seemed like everything I looked at had gluten in it.

Another issue was cross-contamination. I needed to replace everything that could be hiding gluten including toasters, cutting boards, teflon pans, and plastic spatulas! It was incredibly depressing yet the more research I did the easier it got.

People with celiac can live normal, healthy lives, and I found a lot of support on the internet. There, people from all over the world join together to share hints, problems and commiserate. It makes this whole diet thing more livable.

I went to my local health food store with a printout from a company that makes gluten-free foods and that now stocks a wide variety of gluten-free products. I'm finding pasta, breads, and even some cookies that are so good most people wouldn't know they are not made from "regular" flour. There are also several good mail order bakeries that have good bread, bagels, and other products made from rice, tapioca or potato flour. I order in quantity and freeze.

It definitely gets easier as time goes on. Within a month on a gluten-free diet my "IBS" and stomach cramps were gone! The nausea took a bit longer to improve but each day it was getting better.

When I returned to the doctor and said I believed I had celiac, he was doubtful. At my insistence he ordered the blood test. At that point I had been off of gluten for about 6-8 weeks. The test was negative. By this time I had met other people with celiac through the internet and they informed me the test would not be accurate unless I had been ingesting gluten for at least six weeks before the test. I double checked the information with some on-line celiac associations and it seems they were right.

My dilemma now was whether or not to go back on gluten for an accurate diagnosis. It was a hard decision. I have two daughters and I felt I needed to know since this could run in the family. My father suffered for years with gastrointestinal problems before dying at age 65 of colon cancer. I'm sure now he had celiac disease.

With that hanging over my head I decided to go back on gluten for answers. My first meal was a pizza! Yum! The next day I was fine. So I continued to eat gluten. Within two days the cramps and diarrhea were back. By two weeks I was sick everyday and having trouble getting myself to work, but I didn't give up. My husband thought I was crazy. He kept telling me I already knew what was making me sick. Why was I doing this to myself? But I had made the decision to find out if I really had celiac so on I ate. On really bad days I took Imodium and sometimes didn't eat until I was safely home. The nausea was constant. Some days the cramping and pain was so bad I just couldn't eat at all. I don't know if this hurt my test results or not but there were times when I just couldn't bring myself to swallow any food at all. Eating caused the pain to worsen. I did this for six weeks.

The day of my blood test, I did not eat before I went to the lab at two in the afternoon. I was afraid if I ate anything at all I'd get sick at the lab and that would be too embarrassing. Ever sit in a room full of people while you were waiting for your turn, fighting nausea and just knowing everyone was watching when you got up to use the bathroom five times? Let alone having to sit still long enough to get the blood drawn. The blood work all came back negative. At this point I had my 16 year old daughter in for a blood test. The doctor thought I was crazy. She didn't fit the profile. I asked him to do it anyway to put my mind at ease and he did. The blood work tested positive. Likewise my 19 year old daughter tested positive. Both of them opted out of the endoscopies, even though this is thought to be the gold standard for diagnosis. They went gluten-free and are both feeling better on the diet.

Two weeks later I went for my endoscopy. I asked the gastroenterologist how many biopsies he was going to take and he told me, "Enough, don't worry." But I did worry. What if it's not enough? Celiac damage can be patchy and I desperately wanted an accurate diagnosis. The doctor called me two days later and said the biopsy was fine.

So I am an undiagnosed celiac. I went gluten-free the day of my endoscopy and today I am feeling better than I have in my whole life! The "IBS" is gone, my skin is clearing and I never get nauseous. Today I feel healthy and I am living a much better life. Traveling still makes me nervous but it's getting easier as I learn to trust my body once again.

Would my tests have been positive if I had been tested before going gluten-free? I don't know and at this point I don't care. I know what makes me sick and I avoid it. It's as simple as that. I only wish I had understood that before going on the gluten challenge, it would have saved a lot of pain.

My biggest problem now is the people who say things like, "Oh, I couldn't live without pasta!" (Would they say to a diabetic, "I couldn't live without sugar"? (Of course not.) To these people I just say, "You could if it made you sick."

And I thank God everyday I have my answer: celiac disease. It's a different way of life but one that is quite livable. Pasta never tasted as good as being healthy feels.

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


CELIAC DX STORY: Dimitrios Douros

Wednesday, February 28, 2007

"My son Pablo and I were diagnosed in the Spring of 2000. Since then our family has gotten involved in listservs, groups, meetings, the celiac walks, and activities to raise celiac disease awareness and enact food labeling laws."

I didn't know I had celiac disease. I found out after two years of taking my son to general practitioners and specialists. I needed to find out why, even though ate everything we put in front of him, he had a bloated belly and had not grown an inch or gained a pound from age two to four!

The gastrointestinal specialist said it was constipation and had us give him laxatives! He developed rectal prolapse from straining so hard during his bowel movements. Rectal prolapse is a rare symptom of celiac disease so the doctor missed the diagnosis and tested him for cystic fibrosis, a fatal disease for which rectal prolapse is more common.

I wigged out! I told my wife: "I am not ready to bury my son!"

While the doctor tested him for cystic fibrosis (sweat test) I took matters into my own hands. I went on the web, and using rectal prolapse as the search item, I looked for a more palatable diagnosis. One of the links took me to a page describing celiac disease. I read the list of symptoms with tears rolling down my cheeks because not only did it fit my son's problems but I also had each and every symptom.

The cystic fibrosis was negative and we spent the next three to four weeks trying to convince the gastrointestinal specialist to test for celiac. She finally did, probably just to shut us up. And guess what! The test was positive so she wanted a confirming biopsy. Our son was just four at the time and hated needles. So I was in the examining room with four other people holding him still so they could hook up the IV for anesthesia! Then I held his hand while the anesthetic was administered. I felt him and saw him go dead limp. I'll never forget it!

My son's biopsy confirmed celiac disease. He went gluten-free, his bloated belly went away and he's been growing like a weed ever since! A month later I had a blood test. It came back negative. But I KNEW I HAD CELIAC! I went gluten-free and ALL my symptoms disappeared in less than a week!

If I didn't hate needles even more than my son, I might have gone for the biopsy to confirm I hve celiac disease despite the fact that my blood test was negative. But I do hate needles, so I will not have a confirmed diagnosis.

Finally, what hurts the most about this experience has been to recount and re-live the pain of our two year search for a diagnosis. It upsets me how we had to expend so much energy to demand 21st century medicine to get a diagnosis rather than settle for folksy-wisdome-simple, it-worked-for-my-neighbor remedies.

Taken from A PERSONAL TOUCH ON CELIAC: The #1 Misdiagnosed Intestinal Disease. Apt Publishing, 2004.


CELIAC DX STORY: Alison St. Sure

Wednesday, February 28, 2007

"I was diagnosed in December 2002 at the age of 32. I live an active lifestyle in San Francisco that includes sports, travel, and even dining out."

My mom found out I had celiac disease on the internet! I had been undergoing blood tests, including a bone marrow test, to find out why I was so anemic. At least five doctors had mentioned anemia over the previous 10 years but had never treated it seriously. I also experienced stomach trouble for a long time however it never occurred to me this was not normal. When I told my mother aobut my various health problems, she began a search on the Web and found celiac disease.

After a blood test (which I had to ask for) and a subsequent biopsy which came back positive, I met with the gastroenterologist who performed the biopsy. I asked, "So, how many cases of celiac disease have you diagnosed?" I'm not sure what the number I expected to hear, somewhere around 25? 100? "You're the first!" he replied, as though I had won some kind of lottery! I had walked into the doctor's office that day thinking what I had was common, but there I stood, shocked and wondering if I was a freak.

I had come prepared with 100 pages I had printed out from the Internet on celiac disease, excited and ready to discuss it all with the doctor: The hidden forms of gluten, the various symptoms and related diseases associated with it, the possible nutritional deficiencies I might have as a result of the damage. Instead I watched the doctor open a big medical textbook to a page on celiac sprue ... He said, "So, it looks like you need to stay away from ..." He put on his reading glasses and scanned a page of the book. "Wheat .." he turned the page "Barley, and Rye." End of sentence. End of diagnosis. End of medical advice. "ARE YOU KIDDING ME?" I shouted. Okay, I only shouted it in my head, but it was loud!

I walked out of the office, realizing I would need to figure this out on my own, and headed for the grocery store to get started on my new diet. I was excited and determined when I went in, but burst into tears as I drove away from the store. I wasn't crying because I couldn't eat a muffin anymore, I was crying for the loss of freedom I suddenly felt. I went through a grieving process and have had ups and down since. Now, almost a year after going gluten-free, I am thankful for the amazing improvement in my health. I am also thankful to my mom for discovering my condition. It turns out she too has celiac disease and we are both living healthier, happier gluten-free lives!


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