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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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    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
    • I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  
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