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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!


CELIAC DX STORY: Leah Edelstein

Wednesday, February 28, 2007

"I have an M.S. in speech-language pathology. Currently, I'm a Co-Chairperson of the South New Jersey Chapter of Celiac Sprue Assn/USA Inc. My 21-year-old daughter is a senior at Yale Univ. My husband and I celebrated our 25th wedding anniversary in December 2003."

My friend Fran tells me I see the world though "Celiac Colored Glasses." Allow me to backtrack. I was diagnosed with celiac disease 21 years ago. This was after 10 years of intermittently feeling ill to various degrees. After an emergency hospitalization at age 19 (I had extreme abdominal cramps) I was diagnosed with colitis. Fast forward nine years to less than two months after my daughter was born. I began to have "classic" symptoms of celiac: diarrhea, weight loss, weakness, etc. The doctor dismissed my concerns about my fatigue. He told me my baby was getting heavier to carry (in my arms) and that was why I was feeling so tired. He was clueless. When I began having numbness I asked him to refer me to a neurologist. He did.

I credit the neurologist with saving my life. At first he thought I was malingering (faking illness) but then he did a simple reflex type test which proved my calcium levels were extremely low. I heard him call my family physician and practically yell at him.

Not too long after, I woke up very early one morning with a complete sensation something was utterly wrong with me. I left my infant daughter with my mom and had my husband drive me to a nearby hospital ER. I saw noone in charge and waited patiently. Suddently someone who seemed to be having a heart attack was rushed through the office door and got attention. I obviously wasn't a top priority. I was finally let in a room and while waiting for a resident my body began to "cramp up." My hands were unable to get out of the fist position. The pain I felt was so much worse than the pain I felt with my then recent experience of natural childbirth. I actually begged my husband to kill me.

When I finally saw a resident I told him about my calcium levels and he began administering calcium through an IV. After my blood work was done it was discovered I needed more than just calcium. I was now a top priority.

Eventually, my body began to feel better. I was attached to a cardiac monitor. Later I learned from a too truthful doctor I was in real danger of going into cardiac arrest. he said it was a miracle I was alive (my electrolyte levels were so low). I found out he wasn't exaggerating when a second doctor repeated the same thing to me a few days later.

Being naive, I thought once I was stabilized I could be discharged. No such luck. I spent 15 days in the hospital and had a different diagnosis almost each day. Finally the results of my small intestinal biopsy returned positive and I was told I had celiac disease. I actually laughed. I told my doctor it was the funniest diagnosis yet! I found it incredible having eaten wheat, rye, oats, and barley for the 28 years of my life that I now had a problem with those grains.

The hospital staff didn't make things less confusing for me. They kept giving me bread with my meals. And being newly diagnosed, with little information about the diet, I ate it. I kept telling myself it must be "special bread," the staf must know what they're doing! I've grown to learn to never take ANYTHING for granted.

One thing the difficult ordeal of getting a celiac diagnosis has taught me is to suspect celiac in others. The symptoms are so varied and some people don't even have symptoms. According to one respectable source, 97% of celiacs still go undiagnosed. I "see" celiac among many people whom I meet. That's why Fran tells me I see the world through "Celiac Colored Glasses." And what's more, I've influenced her to do the same!

From: A PERSONAL TOUCH ON CELIAC DISEASE: The #1 Misdiagnosed Intestinal Disorder." Apt Publishing, 2004.


CELIAC DX STORY: Tina Ackerman

Wednesday, February 28, 2007

"Hi, I'm Tina Ackerman, a 25-year old, living in Goffstown, NH. I was finally diagnosed with Celiac Sprue in May 2003. My favorite grocery store to shop at is Trader Joe's. They have a gluten-free spicy jalapeno chicken sausage that simply ROCKS!"

DURING my senior year of college, I had to work full time to support myself. my parens are not wealthy so they were only able to help me with love and support, not financially.

By the end of October, I was very tired and not feeling up to par. My co-workers suggested I go to the emergency room to be evaluated since I had no physician. I figured I caught a virus or was just run down since I was in school and working so much. The ER ran all kinds of tests including blood work, a mono screen, a strep test, and complete blood count (CBC), and a metabolic panel. Everything came back normal. They said I had a virus that caused gastroenteritis. This is how they explained the abdominal pain and diarrhea.

I returned to work and school, just trying to survive each day. Weeks passed and I did not feel better. I completely stopped eating because it was hard to keep food down. When I wasn't vomiting, I had horribly painful abdominal cramping and persistent diarrhea. My weight went from 110 to 90 lbs. Since my condition wasn't improving, I went to the doctor at the local Family Health Center. The nurse practioner I saw was worried I had cholecystitis (inflammation of the gallbladder). She ordered an ultrasound and made an appt for me with a surgeon. They cancelled the appt when the results of the ultrasound came back normal.

I was extremely frustrated. While I didn't want something to be wrong, I wanted to find out what was causing my problems so I could feel better. I was so tired and dehydrated I would pass out if I stood up quickly. I went back to the nurse practioner a few days later and this time they admitted my 87 lb emaciated body into the hospital. They ran more tests and drew lots of blood. The test results were all negative. They decided I had IBS and referred me to a gastroenterologist. The doctor placed me on Levsin for the abdominal cramping. This helped but I began to have side effects from the medication. I had trouble urinating and became extremely sensitive to light. I stopped taking the meds.

The doctor then told me to go on a BRAT (banana, rice, applesauce, and toast) diet. This bland diet was supposed to help my stomach to get used to digesting food again.

My health was so bad I took a leave of absence from school and work and moved back with my parents for a month to recover. I slowly began to feel better.

A few months later I began to date my future husband, Tom. I was often embarrassed when we first started dating. We would be out shopping or at a movie and we would have to stop what we were doing and go home beause of my "IBS". When the diarrhea came it would be horrible, painful, and physically draining. Thankfully Tom took it all in stride. It did not bother him that I was gassy, bloated, and miserable a lot of the time. It was emotionally draining for me. I was becoming very self-conscious and had trouble using public restrooms. Being chronically sick took a toll on my self-esteem. I was extremely frustrated with the fact I would be sick for the rest of my life. Slowly I began to gain weight and grew accustomed to all my gastrointestinal distress.

I found myself a new primary care physician and made an appt for a physical. At the physical I mentioned all my intestinal problems. The doctor ran some tests and like before they all came back negative. Since she couldn't find anything physically wrong with me, she concluded I must be depressed, anxious, and making myself sick.

I was devastated and cried for days. If I wasn't depressed before, I was now. I couldn't imagine why I hated myself so much that I would make myself so sick. I started going to therapy to discover the root of this self-hatred that was making me so ill. The therapist placed me on medications. I went through Paxil, BuSpar, Amitriptyline, Celexa, Ativan, Ambien, Effexor, Klonopin, Prozac, and then Serzone in the course of three years. When one medication didn't work they just put me on another. I stopped taking meds shortly after I started Serzone because I had an allergic reaction. I finally said enough. No more meds.

Four-and-a-half years after my first hospitalization my weight had ballooned to 140 lbs. I was getting married to the love of my life, Tom, and we planned our wedding at the Polynesian Resort at Walt Disney World. Our wedding was perfect, right down to the best cake I had ever tasted and the mouse ears on our heads. We spent five days at Disney World and then took a four day cruise to the Bahamas. We ate and drank like kings. Tom gained 15 lbs in two weeks. I imbibed more than I ever had before. Unfortunately my stomach and intestines were not as happy as my heart and my soul. I just felt like hell.

Three weeks after we came back from Florida we went to Baltimore where I attended a Johns Hopkins conference for work. Tom came with me even though he had the flu. Wednesday, our first night in Baltimore, we went to the Cheesecake Factory for dinner. I thought I caught Tom's flu because I was nauseous and had abdominal cramping. For dinner I ordered a turkey sandwich of which I only had a few bites. The dessert was the real reason we went to the Cheesecake Factory. I ordered Chocolate Peanut Butter Cheesecake and was only able to eat a quarter of the piece. Tom realized I was not feeling well at this point. I would never pass up a piece of cheesecake. I had been looking forward to eating there for a few months. By Sunday, I could barely keep any food down. The plane flight home was miserable because I felt so ill. Tom's flu hadn't lasted this long and he already felt normal.

The next day at work was very busy and we had sandwiches delivered for lunch. After eating a quarter of a sandwich, I was sick to my stomach. My abdominal pain was all on the right side. What if I have appendicitis?

I left work and went to the ER because my doctor's office could not fit me in. I had a negative CT scan but my white blood cell count was elevated and I was severely dehydrated. So they admitted me into the hospital for three days. The diagnosis came back as "acute exacerbation" of IBS. My primary care physician told me it was probably due to too much stress in my life. I should change my diet and eat more fiber. She suggested introducing whole wheat products.

Even after being discharged from the hospital I still couldn't eat and lost 10 lbs in two weeks. I spent more time in the emergency room for pain and nausea control and finally begged my doctor to refer me to a gastroenterologist after losing 20 lbs. I was able to make an appt but had to wait a month.

When I finally had my appt, the doctor drew some lab work that included a transglutaminase titer (Ttg) for celiac disease. A week later the gastroenterologist called me at work and told me my Ttg was 39. He felt at that level I didn't need a small bowel biopsy to confirm the diagnosis of celiac disease unless I wanted one. I didn't want one.

I had read up on celiac disease so I knew what it was. I would have to be gluten-free for the rest of my life and I would be happy to do that if it made me feel better.

I was happy, angry, and scared all at once. Happy I finally knew the reason I had been so sick for half my life, angry at my doctors, who misdiagnosed me for so long and who blamed me for being sick, and scared I would never enjoy food again. I love pasta, pizza, and convenience foods and wasn't quite sure how I'd live without them.

I had a follow-up appt with my primary care physician, who in my opinion, is incompetent and not very empathetic. When I requested a Dexa Scan to measure my bone density she told me I didn't need it. I asked my gastroenterologist at my next appt if I should have the scan and he agreed I should. The results came back as severely osteopenic. This reinforced the feelings I had about my primary care physician. I now take daily calcium in the form of gluten-free VIACTIV chews. This is so important especially since I was extremely lactose intolerant for the first three months after being diagnosed. Lactose intolerance is very common when the small bowel is healing from all the damage the uncontrolled celiac disease created.

It has been six months since my diagnosis. I am starting to get over my anger about being misdiagnosed and I'm more at ease with myself now. I don't stay up at night thinking about my celiac disease anymore. I now know I have to be my own advocate and not believe everything a doctor has to say. I am the only one who knows when I am sick.

I am learning that being gluten-free isn't the end of your life, it is the beginning. It just takes extra time to plan your meals. I have traveled to Germany since my diagnosis and had a wonderful experience. I didn't starve while there and actually ate very well. I refuse to get a salad with no dressing every time I go out to eat. You can usually get whatever you want if you explain how it needs to be prepared. This of course applies to real restaurants with chefs, not chain restaurants.

Just read and learn as much as you can. Every celiac needs to learn as much as they can about their condition. Nobody can do it for you. There are wonderful websites and books out there that are a tremendous help.

I also try to educate as many people as I can without being annoying. You'll be surprised how many people want to understand this illness. I feel the more we educate people about celiac disease the easier it will be for the afflicted people who are not yet diagnosed.

From "A PERSONAL TOUCH ON CELIAC DISASE - The #1 Misdiagnosed Intestinal Disorder", Apt Publishing, 2004.


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