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Questions For Parents Of Celiac Babies/children

beebs

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beebs Enthusiast
beebs
Posted

I've posted a few times recently on this site -trying to get my head around everything.

I just have a couple of quesitons regarding my 17month old.

He has come back negative on his bloods for celiac. But he had low iron and low vitamin D, which is the same as my eldest child (who is 4)who also consistantly comes back neg on bloods.

He has been a very difficult baby since birth, cried all the time and seemed in agony almost. possetted after every feed, colicky. Started projectile vomitting at 6 months and was told to take him of lactose - seemed to help slightly but still had foul stools every day.

Lately his stools are far worse than usual and he was found to be have pancreatic enzyme defieincy which is usually found in cystic fibrosis. Needless to say we had a very scary week last week as we were given a 90% chance of CF. Luckily he was negative. His stools basically - he eats and it comes out the way it went in, he digests very little - its also greasy and very bad smelling and you can see exactly what he ate the day before. He still vomits most days - but not projectile -just a little spew.

His appetite has been steadily decreasing. But in the last few days he literally has eaten nothing - well - he had a bite of a sandwhich yesterday and he had a bite of a cookie the day before. Today he ate grapes and blueberries with gusto and I realised that that was the first non gluten thing I had given him. Over the last few days he wouldn't eat cereal, sandwiches or toast, not even cookies or granola bars.

Is he somehow avoiding gluten? Is that possible at all? And if he is - how the heck am I supposed to get him to eat it so that it doens't mess with the Endo he is supposed to have soon.

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      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names. Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.
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      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

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    • Scott Adams
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