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My Diagnosis Story

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Since I was diagnosed way before internet, and was a baby, no one here really knows my story. I feel like this will help other people, and it is interesting what all i went through.

Oh BTW don't remember any of this, just family stories...

Here it goes, (be warned it is long...)

So I was born on June 14, 1990. All was fine, started walking at 10 months, and was very healthy. Then when we started introducing solid food other than baby food (don't know if that is considered solid...) at around 15 months, i stopped walking, talking, eating, playing, living. They thought at first it was just a virus, and didn't really care, then another month or so later, I got really sick, started throwing up and all. Could not keep any food down, even liquids I would throw up. They could find nothing wrong with me, so at 17 months I was first hospitalized at Packard at Stanford, Ca. They thought that it could have been cancer, so they did multiple spinal taps, with no positive. Then they thought it could be CF, but they couldn't get enough sweat out of me to do the test because i was so dehydrated. THe docs said, nothing is wrong with her, just stop breastfeeding, and don't pick her up as much.

Another month went by, with no other ideas, back in the hospital cause of major dehydration and other things. Well she is not waslking, so let's do a muscle biopsy in her quad... Nothing wrong there either. I went home from that surgery, and threw up all weekend long. All i would eat would be pancakes and crackers, but would still throw them up.

I was admitted again, and they still couldn't find anything wrong with me. They inserted feeding tubes, and a broviac catheter for IVs through the heart. Failure to thrive completely, and yet the doctors could not find out what was wrong w/ me. My hair was all gone, bloated stomach, constipation (which is why the GI told my mom after that I could not have celiac.) no fat on my body, sunken face/eyes,

basically every classic symptom of celiac, except for the D.

They finally tested the celiac in a routine blood test, just to see. The numbers were so high the GI doc said he had never seen them so high before. My Ped told my mom not to change the diet, and she didn't, she thougt that we might finally be getting a positive diagnosis of something. Biopsy showed... Guess what?!

NO villi left in the intestines. Completely gone, no wonder I was so anemic!

Went on the gluten-free diet and by a week later, was eating and playing and smiling for the first time in 5 months. They kept me for a couple more weeks, and I was doing so much better. Finally had the feeding tube disconnected (but not taken out...) and the broviac catheter removed surgically.

When I went home, completely differnt child than who was admitted to the hospital a couple weeks earlier. About a month later when i was in my stroller i ripped out the feeding tube, which was fine with my mom because we hadn't been using it at all.

My mom had found out later that the nurses had thought 3-6 more weeks I could have lived before my body would just crash and die.

A year later, my doc said he wanted to confirm the celiac by doing a gluten challenge. My mom out right refused, and he said that the diagnosis could not be confirmed because of the parents refusla to do a challenge, and I can not be diagnosed w/o a challenge ( we all know that is wrong now) We of course dropped him, and got a very good GI doc now.

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The moral of this is, we have all gone through so much, and just be glad to be living, and on the road to recovery :).

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Guest nini

thank you for sharing your story. I am so glad they figured it out and you are with us now! the GI refused to dx my daughter with Celiac because she too had constipation, but she also had "d", and she would projectile vomit EVERYTHING... failure to thrive, not walking, didn't crawl, anemic, hypoglycemic, GERD, chronic upper respiratory infections and tonsillitis and ear infections, WHY ON EARTH these Dr.s won't consider Celiac if there is constipation is beyond me. He was insistant that she just had IBS... please. With her pediatricians support, I put her on the diet and viola! Within a week I had a totally different child! I will not challenge her with gluten, I saw what it did to her. I was also stunned that they wouldn't consider the dx in her especially since I had recently been positively dx'ed with Celiac.

Thank you again for sharing, and I hope my daughter is as positive and helpful as you are when she is your age!

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Your parents must of been frantic Molly. When your a baby all you can hope for is the diagnosis and get the right treatment before time runs out. Also reading your story it amazes me at what the doctors say. You had the classic symptoms. I also didn't get the diarrhea as much as the constipation which I believe happens just because you can get so dehydrated. Your sure look healthy and vibrant now and I hope you continue to get stronger and stronger without any further complications.

Gail

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Molly, I am very glad they figured it out in the end, even though it was just in the nick of time. I hope doctors aren't quite as clueless these days (even though I am not sure much has changed yet, which is regrettable).

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Wow, Molly, I'm also glad that you got your diagnosis in time. It's really interesting for me to hear your story because I had the exact same symptoms as a baby--vomiting and all (except for constipation--I had D instead). However, it was the late 70s and they didn't do all of those wretched tests (or even a test for celiac disease). My mom was convinced that the doctors had no clue what was going on, so after 6 weeks in the hospital she decided to change my diet herself. Instead of formula and baby food she would put sweet potatoes, green beans, cooked carrots, etc into a food processor with a bit of water, and miraculously I started to get better. She had no idea that gluten was the problem, so when I was old enough for solids, I started eating bread, etc, and I was sick frequently, but we just had no clue about celiac disease. I would have periods of being almost too sick to stand, extreme malnutrition and inordinate weight loss, dehydration, shakiness, etc on and off for years, until I was misdiagnosed with IBS at 21 and given medications that dried up my gut--these masked my celiac symptoms, and finally the damage to my system was so bad that at 24 years old I got such aweful rectal bleeding that my body could no longer take the blood loss--so bad that my doctor got me in to see the best hematologists, GIs, etc that Miami had to offer on a next-day basis. Finally, when I was almost completely non-functional, my general care physician ran my bloodwork and found that my levels indicating for celiac disease were unbelievably high. I started the diet and have been doing really well ever since, but I still get bleeding quite often because they said my system will never quite heal the way it would have if I had been diagnosed within a reasonable time frame. I'm so glad that this didn't happen to you--you are fortunate to be born in the 90s and to have such vigilant parents as well.

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The moral of this is, we have all gone through so much, and just be glad to be living, and on the road to recovery :).

Good moral!

It is amazing what babies, and parents, can live through. I'm glad you don't remember it and I can't imagine your family can forget it. And yet, what a miracle. After almost losing you, they got you back with the chance to be healthy.

Thanks for telling your story!

PS That part about the doctor wanting to do a gluten challenge on you floored me.

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Thank you for sharing your story. You've obviously been a fighter from the beginning! How grateful you must be for your loving and determined parents and how blessed they must feel to have you.

To borrow a phrase from the Lance Armstrong Foundation....

Live Strong!

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Thanks for sharing your story. They thought I had CF when I was about three years old. But that was in the 70's and they didn't test me for anything else. I always wonder what they would have found back then.

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Wow! It gave me chills to read what you went through. Very, very happy that you are doing well now.

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