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Diagnosis Stories


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#1 flagbabyds

 
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Posted 02 January 2005 - 09:59 AM

This is my diagnosis story, I thought I'd share it, my mom wrote thie piece for Newsweek. I think other people should post their's also, it's good to see how much all of us has gone through to get this simple diagnosis
What's Wrong With our Baby?
By Debbie Duncan

While much of the world watched the Olympice, my husband and i witnessed an event that gave us as much joy as any medalist's parents: our baby come back to life. Molly's symptoms had baffled her doctors — more than 50 of them at a major university hospital, since mid-November. Why would an active and cheerful 17-month-old suddenly stop eating? Why would she stop walking and playing? When nothing showed up after three days of round-the-clock testing in December, we were sent home with instructions to pop a bottle of milk in Mollt's mouth first thing in the morning instead of breast-feeding her, to give her vitamins and not pick her up as much. Was this meager advice the best modern medicine could do?
Doctors' advice notwithstanding, I held her during ht eholidays as she continued to waste away. What was even more disconcerting was her behavior: she wanted nothing to do with toys, books, Christmas or her two older sisters. "No!" she yelled whenever the came close.
On Dec. 31, our pediatrician called at 7:30 a.m. She had been worried about Molly after seeing her the previous day, and had returned to the hospital to review the chart. One of the brain scans turned out to be cause for concern; she wanted us to see a neurologist is a nearby city as soon as possible. to check for brain disorders. Happy New Year?
"Molly's brain isn't the source of the problem," the neurologist announced 58 long and sleepless hours later. "She's obviously very ill, but she does not have a brain disease." My husband and I were positively giddy driving home that night. Molly wasn't going to die! Then we remembered we still had a sick kid on our hands, on who couldn't even hold her head up in the car seat.
Not knowing what was ailing my child had to be the most frustrating experience in my 38 years on the planet. Doctors, too, were clearld uncomfortable about being unable to come to a diagnosis for a 1-year-old who in two months had dropped from 23 to 18 pounds and lost all her body fat. Not that the didn't try: because Molly was so sick for so long, she continued to be poked and prodded, sedated, sliced and scanned in order to looke for what I started calling the "disease of the week." Different specialistes took turns chasing every possible lead—leukemia, mononucleosis, neuroblastoma(another childhopod cancer), infant botulism, neurmuscular disease( like muscular dystrophy), cystic fibrosis, heart disease and any muber of debilitating genetic disorders. While drawing her blood one Monday our pediatrician asked, "Should we add HIV to the list?" "Why not?" I replied over my baby's screams. I was numb. There were weeks when I actually wished Molly had cancer, just so she'd be able to begin treatment.
The next hospital stay, this time ion the oncology ward in late January, brought more "theories of the hour," but still no asnwers. It seemed as if everyone we knew had ideas to propose; we relayed every one to the doctors. Then finally, three weeks later on out thrid admission, with yet another docor's name on Molly's tiny hospital bracelet, I heard the magic words: "We have a diagnosis: celiac disease."
The doctors had not figured this out on their own, mind you. Just by chance, a colleague of my husband's– who's not a physician—asked if we'd checked for gluten inrolerance, a chronic disorder caused by a sensitivity to the protein found in wheat, oats, barley and rye. Though Molly did not have all the clasic symptoms(such as diarrhea0, I asked the docs anyway. New X-rays revealed demineralization of Molly's bones caused by malmutrition. An intestinal biopsy showed severe damage, causing her digestive tract to be unable to absorb nutrients. Ant another blood test—her 18th—found celiac antibodies.
HAPPY NOISES: ONce the doctors had a diagnosis, they were in familiar territory and could plan Molly's rapid recovery. She needed nutrition, but fast, so they pumped fats and other calories through a catheter inserted into the large vein leading directly into her heart, plus a special formula to her stomach via a tube running from her nose. Within days of beginning treatment she showed exciting signs of improvement. New noises—happy noises—came out of her mouth, her eyes were no longer sunken, she smiled 10 times an hour instead of once every six days and she toddled on her stiff little legs down the hall to physical therapy. Hospital staff who had seen me carry her over my shoulder all winter cheered.
Two months ago Molly's health seemed totaly out of our control; now amazingly, all she needs to thrive is to follow a gluten-free diet. We hope Molly is too young to remember the hell she went through before they found out what was wrong with her. Her illness was not without its costs, of course, and we (thank God) have mediacal insurance; I haven't asked our carrier how it feels to pay $100,000 for a food sensitivity. At home, work came to a stadstill, normal routines disappeared. Understandably, our other daughters felt ignored.
I doubt I will every understand why the doctors at the hospital didn't take out concerns seriously in cDecember, until another month of malnutrition left Molly's body so stressed that in January it appeared she had every disease in the book. Our pediatrician was the only physician who trusted our instincts from the outset. Should she, a practitioner witha full load of sick children—have to second-guess and sometimes bully the academic experts to care about the patients they share? And what if my husband and I hadn't cone up with the winning diagnosis? How much longer could Molly have survived if we hadn't been so persistent? If our evperience is not unusual, American health care is in even worse shape than some political candidates suggest.
Molly has rediscovered playing, and her favorite toy is a doctor kit. She obviously has a greater capacity for forgiveness that her parents.
Copyright 1992 Newsweek Magazine


PLease post your diagnosis stories

Edited by flagbabyds, 02 January 2005 - 10:32 AM.

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Molly

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#2 flagbabyds

 
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Posted 02 January 2005 - 10:31 AM

This is the other story my mom wrote in the San Jose Mercury News


seven years ago, a family discovered firsthand the most precious gift of all
By Debbie Duncan
For years I had seen reports on the evening news of the Doobie Brothers' annual concert at Children's Hospital at Stanford. While the hospital is no more than two miles from my home, I always thought of it as a world away from my life and experiences. I had chlidren -three in fact- but they were all healthy. Until 1991.In mid-November my third child, 17-month-old Molly, stopped walking, talking, eating, playing, smiling, living. My husband, Bill, and I knew something was wrong, but we didn't know what. Neither did the doctors. Molly's helth was slipping away day by day.
Finally, in the middle of December, we decided to have her admitted to the new Lucille Salter Children's Hospital at Stanford for two days of round-the-clock tests. It was indeed a different world. In the playroom on the first day I met a mom and her 2-year-old; the little girl had just had a brain tumor removed.
The hospital hallways were wide, which was helpful because of all the IV poles and wheelchairs rolling from place to place. Molly had an MRI at midnight down the hall at Stanford Hospital. When she wasn't sedated for a test she cried for me to hold her. I tried to write Christmas cards because they had to be done, but I made little progress.
Our older daughters visited in the evening and worked on art projects with voluenteers. The girls didn't finish the tile they had been given to decorate, so I etched their names - Jennifer, Allison, and Molly - Into the clay after Molly feel asleep in her big hospital crib. The next day she was examined by more physicians and equiptment. In the afternoon a cheerful voluenteer came to our room to tell me about a special event, the Doobie Brothers' Christmas concert. "Would Molly like to go?" she asked. "She's just a baby," I replied. "But we don't have our next consultation until 6 o'clock." "Then come," the voluenteer said encourangingly, "it starts in about 15 minutes."
I met my new friend, the mother of the child who had had the brain tumor, in the hall. The toddler was sitting up in a stroller, her head wrapped in bandages. Molly slumped over me shoulder as I carried her downstairs.
"Oh good," the voulenteer told us when we arrived in the cafeteria. We saved the front row for infants and toddlers." They seated me about 10 feet away from the band. Other patients and their families surrounded us on three sides - kids attached to bags and poles, kids who had lost their hair from chemotherapy
A BLURRED PICTURE
The TV cameras were also wedged into the front of the crowd. When the Doobies started to sing "Oh-oh-oh, listed to the music," I suddenly thought, I don't beling in this picture. I'm supposed to be home watching the story on the news, not sitting here wiht a desperately ill baby who can't lift her head (The girl in teh stroller next to us was up and smiling.)
At that moment I knew Molly was really, truly sick. I felt tears welling up in my eyes, and I could also feel the cameras zooming in on me. I knew the cameramen were thinking, what a good shot. Soon tears were streaming down my cheeks.
We stayed in the front row thorughout the concert. I even managed to smile when I saw the band members use word sheets to lead the Christmas carol sing-along. At 6 o'clock Molly and I were back in our room with her sisters and dad, waiting for the doctor'r report. Bill turned on the news. The attending physician arrrived with "inconclusive" results. While I was talking with him in the doorway, 4-year-old Allison cried, "Mom, you're on TV!"
"WOW, mom," 6-year-old Jennifer chimed in, "you're famous."
I squeezed my eyes shut so my daughters couldn't see the tears. I didn't want to be famous. I wanted to be home and have my baby healthy again.
DIAGNOSIS
That Christmas Molly and I were home, but she was far from healthy. Christmas was a blur to me; picturtes of her show a wan, sad baby looking out from my arms with big, vacant eyes. Eight weeks and two hospitalications later, the diagnosis was finally made: Molly had Celiac Disease, or intolerance for the gluten in wheat, oats, barley and rye. She had been slowly starving to death.
Within a week of starting her new diet, Molly was actually smiling. Physical therapists taught her to walk and play again. We celebrated Christmas after coming home from the hospital the last time. It was the end of February.
Molly is 8 1/2 now. She follows a strict gluten-free diet, but other than that she's a normal, happy, healthy third grader. This month we decided to buy Packard Children's Hospital Christmas cards. Molly wanted to go with me to the gift shop. She punched the "UP" button on the elevator from the garage, and ran to the hospital entrance to jump on the spot that opens the aw=utomatic doors. (Molly rarely walks these days: she runs, bounces, or jumps everywhere she goes.) She made a dash for the tile-covered pillars. "There's our tile, mom," she pointed out. "With out names on it - up at the top."
Once again I felt tears filling my eyes there were no television cameras to record the event; this moment was private. Still, I could almost hear the Doobie Brothers singing for us. I reached for Molly's hand, and we strolled into the gift shop to select our family's Christmas cards.
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#3 celiac3270

 
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Posted 02 January 2005 - 10:42 AM

Very cool idea......these will be interesting to read....i don't have one diagnosis story that i can use...I guess i sorta type it up each time so each time it's a little differently structured. I should probably type up one and save it........ahh, rambling. cool idea, though, I'll post back later when I have a little time to spare to write my story :)
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#4 Guest_~wAvE WeT sAnD~_*

 
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Posted 02 January 2005 - 05:22 PM

Ditto...I'll write mine next time I log on...my mother told me not to stay online long because we have dial up :( I miss wireless and LAN.
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#5 MySuicidalTurtle

 
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Posted 02 January 2005 - 08:05 PM

Well, I guess I could tell my diagnosis story then, too!

For my whole life, since I was a baby, I was sick but not all outwardly unhealthy. My Mom felt cause for concern because each morning (from ages 5-18) I would have diarrhea. We moved around a lot when I was a kid and I had many different doctors. In each state we’d get something like “Nerves,” “Lactose intolerant, “IBS,” or “Take more fiber.” By the time I moved back to Georgia everything was making me sick and it got to the point where I would be sick other times of the day in addition to the morning. I would even have to leave for school real early so I could have time to stop in the bathroom before class. My Mom then dragged me to a new doctor (I didn’t get why because this is how I was used to life and didn’t think it was that odd) and drew blood. Within a few days my new doctor rang my Mom’s cell phone (we were out shopping) to tell us that I had Celiac Sprue and to stop eating wheat right then and there and to make an appointment to see her again. It all made sense. I ate gluten everyday and I had reactions to it everyday. It was all solved by a simple blood test.
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#6 celiac3270

 
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Posted 03 January 2005 - 06:11 AM

Ditto...I'll write mine next time I log on...my mother told me not to stay online long because we have dial up :( I miss wireless and LAN.

LOL....I had dial-up for a long time until the connection got so slow that I'd try to pull up a website, walk away and do something else, then come back in twenty minutes to check. My parents decided it was enough :lol:

Thank you for sharing, Kristina :D
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#7 luvs2eat

 
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Posted 05 January 2005 - 11:03 AM

My diagnosis was pretty fast and simple. I had unrelenting diarrhea for about 2 months when I finally took myself to a GI doc. He gave me a course of Flagyl (an antifungal) while he tested for Giardia after I told him we'd spent the summer boating and swimming in the Delaware River, and did blood tests.

He told me he'd never seen antibody levels as high as mine and told me I had Celiac Sprue. He said it was common in folks of Irish descent... I told him my mom and fam were right off the boat from Belfast... and that was the end of my wheat days.

I remembered questions about possible wheat allergy when I was around 5 years old cause I had to take my own snack to school for a while, but nothing ever came of it and I was completely "digestive system" healthy till I was 48!!

I've since come to the conclusion that my sister's wicked allergies and eczema and my brother's eczema would be helped if they too stopped eating wheat... but if all I had was eczema, I'd keep eating it too!!

Luckily for me, tho, I've always loved to cook and know how a lot of things are made, so it wasn't as hard for me to avoid ingredients when dining out and cooking. Still looking for a good bread recipe tho!
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Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#8 meg

 
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Posted 06 January 2005 - 09:25 AM

I'm incrdibly new! I just got my diagnosis through biopsy on Tuesday. Not only did they do the endoscopy, they did a colonoscopy. Fun. I don't remember much of Tuesday. I have had daily diarhea issues for the past 3-5 years. At the age of 9 I was diagnosed with what they called then "spastic colon". At 33 now this diagnosis has been a turning point in my life. I have a co-worker who has been celiac diagnosed for 20 years or more and we got to talking one day and her symptoms sounded like what I'd dealt with all of my life minus the losing weight. I've always been overweight in spite of my digestive issues. Lately would become very anemic and vitamin deficient. The day Imodium AD came out over the counter revolutionized my world. I was able to do the things I was scared to do without knowing exactly where the nearest bathroom was. :( My husband and I have started the Atkins diet this week. We're both overweight and thought not only would this help us lose weight, but it would help us change to the gluten free lifestyle. I already feel so much better. It's been a wonderful miracle for us.
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#9 liljules5

 
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Posted 07 January 2005 - 09:09 PM

I just got my diagnosis today! good or bad...I am just glad to have results and something concrete as to why I have had stomach issues. I came home for my winter break (I'm 18) and I had to go to a GI who had me undergo an endoscopy with biopsy, colonsocopy, small bowel series, blood work, etc.....Rough three weeks, but I am glad to have an answer. I wont go into details, as I'm sure most of you have undergone most of these procedures lol.... glad I found this messageboard!
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gluten-free since January 7, 2005 and feeling a LOT better... :)
Positive Biopsy diagnosed celiac disease 1/7/05
Started on Cytomel (thyroid medication) Feb 21, 2006. has made all the difference in the world!!

#10 Tabitha

 
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Posted 08 January 2005 - 02:43 PM

I have never been officially diagnosed, but there is very little doubt in my mind. I tested positive for antibodies in a test run by my endocrinologist, and he suggested that I try a gluten free diet for a while to see if I noticed any changes and if I could get my iron levels up. I have been gluten-free for over 2 months now. After only a few days the nausea that has plagued me every morning for as long as I can remember was gone. My energy levels are going up. And, my fasting blood sugars (I'm diabetic as well) have been at the low end of the normal range for the past 2 weeks. There is no more running for the bathroom 2 or 3 times daily. None of this can be attributed to a "better" diet in the general sense, since I have eaten anything and everything to make up for the loss of bread and pasta. Oh yeah, and I am finally losing weight (without trying) after years of failed efforts.

So, whether I get the data or not, I'm sold. :D

And now that I have found this forum, being gluten-free doesn't seem quite as hard or lonely as it did. Thanks
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