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MacieMay

Gluten-Intolerance Dx

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My 21 month old has been dx with gluten-intolerance. We have been strickly gluten-free for a few months now and she is doing so much better. I'm just wondering how common this diagnosis is? We know she is not Celiac because she had the full work up and has had the gene testing. We have kind of been dismissed by GI and I'm wondering if we should follow up with allergist, who maybe down the road could do a food challenge. i don't know??? I'm not really sure where to go from here besides staying gluten-free for now. I do think the gluten-intolerance is something she could out grow. Her two older sisters are healthy and have no food allergies or intolerances or autoimmunes. She was 3 weeks early and I'm thinking maybe her GI system just need some extra time to mature. I don't know? Does anyone have a crystal ball? lol!

Thanks!

Malyssa

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I hope you get some answers to your question, because I have similar questions. My dd is much older than yours, but for now we are assuming she also has non-celiac gluten intolerance. She also had a negative workup including biopsy. Her genetic profile does put her at risk for celiac, however, and she had two stool tests showing fat malabsorption.

I'm glad your dd is better on the diet. Mine is not completely better.

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While current medical opinion is that approximately one in one hundred people has celiac disease, the prevalence of gluten intolerance to varying degrees is estimated by some researchers, including Dr. Rodney Ford, to be as high as 30-40% of the general population. 97% of celiacs are estimated to be undiagnosed, so you can imagine how many undiagnosed gluten intolerant people that leaves circulating in the general population.

Then you have the difficulty of getting accurate diagnoses in children under five. And the fact that they are finding new genes all the time that are associated with celiac disease and gluten intolerance. So there is a lot of gray out there amongst the black and white.

I think if I were both of you I would accept and be thankful that you have found what makes your children sick and how to keep them well. The children can later challenge the diagnosis if they wish by eating gluten, but at least you can be secure that you are doing what is best for them. :)


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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