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Time To Diagnosis

lisabp

How long was it from the time that you, as parents, really knew something was wrong and you got your pediatrician to do the right blood or other test to diagnose celiac disease?  

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lisabp Newbie
lisabp
Posted

It was about 4 months between the time we knew our son's stomach was protruding too much and we got the diagnosis of celiac disease (after an ultrsound showed no abnormal growths!). How much time passed for others?

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giselleacttwo Newbie
giselleacttwo
Posted

We are still waiting on a diagnosis, but our pediatrician started investigating in December, I asked for some blood tests in March, (borderline positive IgA), he had a positive IgG in June, and we finally got in to the Pediatric GI at the end of the month. So it will be at least six months for him, but his growth started to be affected over a year and a half ago.

KaitiUSA Enthusiast
KaitiUSA
Posted

Well I'm not a parent but it took numerous doctor changes and over a year to figure it out.

Guest nini
Guest nini
Posted

we started noticing symptoms when she was an infant... by the time she was one she was having major issues with vomiting, diarreah, failure to thrive, anemia, bloated tummy... she wasn't dx until she was three, and that was ONLY after I (her mother) had been dx myself and we knew what to look for.

Carriefaith Enthusiast
Carriefaith
Posted

I voted in the 1-3 month category. With me, I knew in November 2003 that there was something seriously wrong with me... I got in to see the GI doc at the end of December 2003 and he tested me (blood tests) for wheat allergy and celiac and something else. Within a few weeks, I was told that I would have to go in for a biopsy because my blood test was positive. I was scheduled for April 2004 <_< but I kept pushing and got in on March 3 and found out several days later that I had a postive biopsy.

Guest taweavmo3
Guest taweavmo3
Posted

It took us about a year and a half to finally get a diagnosis. My daughter's growth halted at 12 months old.....by the age of 2, she had lost two pounds and only grew 1/4 of an inch. I couldn't get doctors to take my concerns about her seriously at all, and it still ticks me off. I think it's sad that I had to find out about Celiac on my own out of desperation to find out what was wrong with her....it took all of five minutes on the internet after googling her symptoms. She had nearly every sign there is, a classic celiac baby.

I ended up taking her to a pedi GI without a referral, I was so fed up. I was starting to think maybe I was overeacting, but the GI took one look at her and said she looks like a celiac baby. Two weeks later she had a positive biopsy, she was nearly 3.

We also now have a new, wonderful, pediatrician. He actually has one other celiac patient....a little girl that he diagnosed at 18 months old. I can't imagine how different my little girl would be if she was diagnosed that young. She is at least a year or more behind developmentally, and I'm sure she has alot of therapy ahead of her to catch up.

I did learn alot through this though. I learned how to be an advocate for my children.....and to trust my instinct no matter what anyone else tell me!

khoots Newbie
khoots
Posted

TO lisab -

How is your son? And how was his tummy protruding? What other sx did he have?

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khoots Newbie
khoots
Posted

lisab - I meant to say, how OLD is your son? Of course, how is he doing, too?

lisabp Newbie
lisabp
Posted
  • Author

My son is 19 months old now and he's been having what we thought were viral infections (throwing up off and on for a week at a time) since there have been some at his daycare every couple of weeks since late February. The stomach went from the usual toddler tummy when he was a year old to a really protruding one by April (his belly button starting to stick out was probably our really first sign but by May he looked pregnant). We did an ultrasound and it showed nothing abnormal in his stomach and that's when we decided that it must be functional (GI) and not structural (sway back, etc.) and did the blood tests that came back positive for celiac disease.

By the way, he has been gluten-free for 10 days now and he is acting like a new baby...almost no crying at all and his appetite is coming back. I made some gluten-free bread in a new bread machine today and he loved it. The doctor says it will take 3-4 weeks before his stomach really starts to go back down.

celiac3270 Collaborator
celiac3270
Posted

12 years <_< (and the average time to diagnosis in the US is 11 years, so I exceeded that...)

Free Food Newbie
Free Food
Posted

Julia started having symptoms (diarrhea and screaming) at 17 months. A good friend's DD had recently been dx'd with Celiac so we talked with her a lot. We told our Ped, "You can test her for whatever else you want, but you're going to test for Celiac!" The Dr's office however, sent the sample to the wrong lab (an unexperienced one) and we got mixed results. However, we'd already gone gluten-free and seen drastic improvement so we haven't looked back.

SofiEmiMom Enthusiast
SofiEmiMom
Posted

For my youngest daughter she was diagnosed at 14 months. Her pediatrician kept saying all of her problems were 'behavioral'. After having gone through 14 months of her never sleeping for more than an hour at a time (she would wake up screaming constantly), her stomach was so bloated it looked like a giant balloon, and 15+ diarrhea diapers per day I stormed into my peds office sobbing demanding testing. The Ped GI I took her too said she had 'toddler dirrhea' and that she would grow out of it and nothing was wrong. My daughter even blessed the GI with a sample of her horrible diarrhea during the visit. As I frantically tried to catch the watery diarrhea as it poured down her leg, he just sat there and repeated himself. I've never been that close to punching someones lights out. I researched everything on the internet and concluded myself that she was gluten intolerant. Within 7 days of going gluten free she was sleeping through the night (something she had never, ever done). In about 2 weeks her bloated belly was gone and she had her first solid bowel movement in her life. She stopped crying and turned into the happiest baby on the planet! It was a miracle transformation. I had her tested through Enterolab, just to appease my husband who needed a piece of paper that stated she had gluten intolerance. It came back positive. My daughters regular pediatrician has since apologized and supports her diagnosis of gluten intolerance 100%. As a previous poster mentioned, I too learned through this experience to be a strong advocate for my children's health. I follow my instincts more than I ever have and it always benefits my family. My heart goes out to parents who 'just know' something isn't right, but take their doctors words as golden despite that feeling.

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