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A Poll Of Sorts

Worriedtodeath

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Worriedtodeath Enthusiast
Worriedtodeath
Posted

HI!!

Our 18 month old is considered to have Celiac even though her blood test was neg. After receiving the neg, we did food trials thru the allergist and discovered that she can not handle wheat. She will be removed from wheat with approval from her ped, ped gi, and allergist as it is causing diaherra, failure to thrive etc. The ped gi feels postive that she will have a positive biopsy but of course agreed that it could just as easily be neg as pos due to the nature of the biopsy.(which is making wonder if the biopsy is the gold standard because of how much "gold" is put in their pockets with such a test) Given our history of problems being knocked out, we are vary wary of the scope. So we were wondering how many with those under 2 who did a biopsy had it acutally turn out positive???

Thanks!!!

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ptkds Community Regular
ptkds
Posted

Two of my dd's were diagnosed w/ Celiac under 2 yrs old. My older toddler was 16 months old. She only had a blood panel done. It was barely positive. I opted not to get the biopsy because I didn't want her to have to get an IV, and also because I was diagnosed w/ it. If I hadn't been diagnosed, we would have had the biopsy. My younger dd had the endoscope done at 14 months old. Her celiac tests were negative, but the dr did see ulcers in her tummy, and her siad she most likely had celiac and that is what caused the ulcers. She was just too young to have a positive test.

The actual "gold standard" is through a food elimination diet. Take her off all gluten for a while (say 2-3 months), and then do a challenge and see if she reacts. If she has a reaction, then you know she has a problem.

Keep us updated and welcome to the board!!

ptkds

Worriedtodeath Enthusiast
Worriedtodeath
Posted
  • Author

HI!

We only eat wheat around here so other than "hidden" gluten, taking out wheat elimanates it for us. After she was so sick in June, we fed her fruit/veggies and the improvement was like night and day. Thus we thought food allergy and when we gave her cheerios and pasta again took her for allergy testing when the bowels went crazy again. He said to do 3 week food trials of egg, diary, and wheat to rule out those three. She passed the first two but postivley without a shadow of a doubt cannot eat wheat. She is still on wheat since I knew that she had to be on it for Celiac testing. With all of our research, we are discovering that her age is a major factor in making the blood and biopsy neg or inconclusive. Our Gi didn't have "stats" on how many of his 2 and under patients had positive, neg, or inconclusive biopsy results. My husband doesn't see the need to do the biopsy since we will take her off of wheat and that 3 drs believe her to have "classic manifestation" of Celiac. So we were wondering if we could find just how many positive biopsy 2 year olds are out there. Quite frankly, the biospy for her age sounds like it is as unreliable as the blood panel and to take a test that will cost a ton of "gold" and possibly damage her beyond repair sounds wrong to us. While none of us have a Celiac diagonis, it has simply amazed me that when hearing other moms describe their biopsy proven older kids, they are describing my oldest children to a t. THey both stopped growing when we introduced "regular" food i.e. wheat loaded but neither of them had chronic constant diaherra jsut spells of it on and of like I have. They did grow very very slowly with my 5th grader now the size of an average 3rd grader. Their ped at the time said that kids settle into a new growth pattern and not to worry about it. We are just trying to see if the biopsy at this point in time is really worth the risk and cost. Or find out just how many go against the medical advise and refuse the biopsy.

Thanks

Stacie

buffettbride Enthusiast
buffettbride
Posted

Obviously YOU know that feeding her gluten is not helping her so it sounds like she will go gluten-free regardless of what you decide re: biopsy--and that is a good thing.

A positive diagnosis from a doctor is nice, but a positive dietary response and a healthy child trumps that any day.

taylor- Rookie
taylor-
Posted

hey there!

i had a positive biopsy at 18 months. I'm not sure what my parents would have choosen to do if there had been the option of a blood test, stool test, or a dietician who knew a lot about celiac at the time. but i have been gluten free since then.. :D

SandraD1971 Newbie
SandraD1971
Posted

My sone was just over 2 - 25 months. His biopsy was positive.

LisaJ Apprentice
LisaJ
Posted

My biopsy was positive at 22 months.

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babygirl1234 Rookie
babygirl1234
Posted

well i have celiac disease my 6 yr old my 8 yr old my 3 yr old and my 1 yr old all have it and Megan has a appt with the stomach doctor monday as does my teen daughter, im going to have them both tested for it just to be safe, because the stomach doctor said that they can have it and not know it because they dont have any signs of it better be safe then sorry

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