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Diagnosis Stories
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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

Edited by flagbabyds
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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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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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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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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

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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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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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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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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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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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    • You're welcome! Yes, I too, hate waiting for lab results. Ugh!
    • I understand this is not a doctor's office and that I need proper testing done to rule out Celiac disease, however, I am stuck waiting until November to even see a GI doctor. So I need some suggestions soon on which test to go for first and what to do as I wait. Also do note, I am 28 years old.

      Right now, the most suspecting culprits to my symptoms have been Gallbadder, Celiac disease, and IBS. I have also been recently diagnosed with pre-diabetes and I am obese.  My Ultrasound and CT scan have all come up as normal and no signs of gallstones. However, I was in extreme pain as my upper abdomen was examined during the ultra sound. My white blood cell count also seems to be high at 12,000 but all blood work came back normal for liver and everything else.

      Symptoms included are: diarrhea
      yellow-stools (Sometimes foul smelling but always sink)
      light gnawing pain in area a few inches above belly button
      burning in chest
      sometimes pain below upper right rib cage.
      Tenderness all around the upper abdomen, but more so on the right and center.
      burping frequently after meals
      Gassy
      bloating in abdomen The pains used to come and go for the past few years as something very mild, but then the yellow stools happen at least four months ago and at a constant rate. Everyday it is either yellow or orange.  Sometimes the stools are lose and other times they are not. Two months in, I was finally diagnosed with pre-diabetes and have been having a strict low calorie and non fatty diet.

      So far the upper right pain has subsided but the pain above my belly button would continue. The gassy and bloated feeling would come and go as well. I get severe heart burn after almost every meal. But I felt it especially after eating whole wheat sandwiches or whole wheat pasta. I however don't feel it when I eat a Nature Valley granola bar, or pack of peanut butter crackers. I also had a chicken and vegetable stir fry with soy sauce cooked in that also had little effect on me. A bowl of cereal also made the heart burn act up pretty bad. I sometimes feel numb or light headed after various meals. Especially larger ones. In fact, it seems the more I eat, the worse I feel. But the less in the stomach, the more the pain above my belly button starts to act up.

      It is usually in the morning and afternoon I feel the most with gas and bloating. Especially after any large meals from the previous day. Despite the diet and work outs I have had, nothing has changed the stools. However, taking fish oil pills has greatly reduced the pain in my upper abdomen as well as the pain  in the the area above my belly button. My question now is, is there a very likely chance of this being celiac disease? Should I go on a gluten free diet to test since I Have to wait so long? Also, which test should I ask the doctor for first, as it will take a GREAT deal of time to pay off each one. Colonoscopy, HIDA scan, or endoscopy. 

      Again, I understand this isn't a site to get compete medical advice or to know exactly what my illness is, but I am trying to narrow down the possibility or what is most likely. If this has a chance of being celiac disease, I would rather know sooner than later.
    • Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too. Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure. Yes I will press to have the other tests done too if this one comes back negative.
    • http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
    • Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
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