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Can You Be Gluten Intollerant And Still Have Malabsorption?

Krystens mummy

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Krystens mummy Enthusiast
Krystens mummy
Posted

Hi all, just wondering if anyone knows can you be gluten intollerant and still have malabsorption? The reason I ask this is that my daughter has been off of gluten for six months (most of her life as she is only 15 months. She had the tests that were negative ( I have heard that they would be anyway because of her age.) Ever since putting her on a gluten-free diet though she has gone from 50 percent for her height to ninety ( on par with her birth chart and her brother!) can she have stunted growth, rashes diarrhoea etc without full blown celiac? The docs are telling me nothing. It's like they figure if it isn't celiac then she doesn't have a problem. I am also VERY short the docs were worried when I was very young. I was a fussy eater and had gut problems as a child as well as recurrent uti's. That has settled now but I had the blood tests recently ( no gene tests though) and two out of three returned a zero! the other came back as two. Maybe she didn't get it from me but her growth spurt is nothing short of miraculous since coming off the gluten.

P.S She is also lactose intollerant. She can tollerate yoghurt and formula with ab cultures in it. If I give her regular formula, cows milk cheese etc she gets diarrhoea different to when she eats gluten but just as nasty!

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Ursa Major Collaborator
Ursa Major
Posted

The celiac disease tests are notoriously unreliable on children under six years old. Just because the test was negative doesn't mean that your daughter doesn't have celiac disease. But yes, even if she has non-celiac gluten intolerance she can have malabsorption. My youngest daughter (she is 16) doesn't have the 'official' celiac disease genes, but when tested with Enterolab had a fairly high malabsorption score.

Anyway, the proof that your daughter must have had malabsorption of essential nutrients is, that now she is finally growing and thriving! Obviously, she needs to be off gluten for life.

Also, it sure sounds like you should be on a gluten-free diet yourself, your childhood symptoms and short stature are typical of celiac disease. You might just want to make your whole household gluten-free!

Ridgewalker Contributor
Ridgewalker
Posted

Kristen's Mummy,

Good for you on trying her out on a gluten-free diet! And YAY that her growth has improved!

I agree with Ursa 100% (as usual!) I thought I'd also add that while only a couple genes are accepted in the United States as being Celiac genes, there are something like 9 or 10 that are acknowledged Celiac genes in some other countries.

Combine that with the fact that the tests aren't nearly as reliable as official studies would have you believe, and it makes you wonder if there is actually a "gluten intolerance" that is separate from Celiac!

AliB Enthusiast
AliB
Posted
Kristen's Mummy,

Good for you on trying her out on a gluten-free diet! And YAY that her growth has improved!

I agree with Ursa 100% (as usual!) I thought I'd also add that while only a couple genes are accepted in the United States as being Celiac genes, there are something like 9 or 10 that are acknowledged Celiac genes in some other countries.

Combine that with the fact that the tests aren't nearly as reliable as official studies would have you believe, and it makes you wonder if there is actually a "gluten intolerance" that is separate from Celiac!

Me too, me too!

I also would not be surprised if Celiac and GI aren't the same thing. Generally the blood tests and biopsies only show it up if there are gut issues. If they are not yet apparent then it is pretty obvious the tests would come back negative. Typical doctor for just dismissing it because the 'test' is 'negative'. A 100% totally reliable test under all circumstances has not yet been developed.

I can never figure out why doctors will take those who have say, a peanut allergy real serious, yet gluten intolerance is dismissed as being of no consequence. Basically, if they can't diagnose it, it doesn't exist!

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