Question About Casein

[misgiss]

We have been doing gluten-free diet for about 4 wks now with 3 y/o. Have seen some improvement in stool which is ecouraging but still a little frustrated. We're living in Japan and are VERY limited with foods he ca eat. My mil just sent a HUGE box of gluten-free food so we're set for about a month or so. Ane we're going home in about 6 wks so he'll be 100% gluten-free then. Anyway, dh and I are doing our best but still think he's getting gluten here and there because there's no way we can be 100% sure some of the things he eats is completely gluten-free.

He has dairy and casein allergy and there are these little hot dogs that he's been eating. The only meat here that isn't processed is ham. Everything else either has a sauce on it ot I don't know what kind of meat it is. Dh took package of hotdogs in to interpretor and there's no wheat but there is casein. Could this be contributing to his stool problems? I gotta tell you though, that even when he was completely dairy free he still had D.

We're doing diet because we're waiting until we get back to US so we can see doc and do tests and all that. Which reminds me of another question. We are also thinking about doing Enterolab (have read good things about it here). If we did and he came back positive will his ped accept that as valuable or legit info? I got a couple names of celiac docs from this site and was also wondering if we should go straight to them or start with his regualr ped? We have done blood tests here in Japan and everything came back normal but dh and I both have a feeling he is celiac.

I hope I wasn't too all over the place. Thanks for any help.

[lorka150]

Hi there,

I am not a parent but I, myself, am casein free. I have similar symptoms when I consume casein or gluten (some seperate, too), but diahrrea is one of them that occurs in both. I wouldn't doubt that it could be from them, and if he has a casein intolerance, i really suggest you stop letting him eat the dogs. They'll just hinder his healing. I understand you're in a tough spot, but I hope that it can be figured out and he'll feel better soon. Good luck!

[Eeyorific]

We have been doing gluten-free diet for about 4 wks now with 3 y/o. Have seen some improvement in stool which is ecouraging but still a little frustrated. We're living in Japan and are VERY limited with foods he ca eat. My mil just sent a HUGE box of gluten-free food so we're set for about a month or so. Ane we're going home in about 6 wks so he'll be 100% gluten-free then. Anyway, dh and I are doing our best but still think he's getting gluten here and there because there's no way we can be 100% sure some of the things he eats is completely gluten-free.

He has dairy and casein allergy and there are these little hot dogs that he's been eating. The only meat here that isn't processed is ham. Everything else either has a sauce on it ot I don't know what kind of meat it is. Dh took package of hotdogs in to interpretor and there's no wheat but there is casein. Could this be contributing to his stool problems? I gotta tell you though, that even when he was completely dairy free he still had D.

We're doing diet because we're waiting until we get back to US so we can see doc and do tests and all that. Which reminds me of another question. We are also thinking about doing Enterolab (have read good things about it here). If we did and he came back positive will his ped accept that as valuable or legit info? I got a couple names of celiac docs from this site and was also wondering if we should go straight to them or start with his regualr ped? We have done blood tests here in Japan and everything came back normal but dh and I both have a feeling he is celiac.

I hope I wasn't too all over the place. Thanks for any help.

Please forgive me, this reply may be "all over the place" Stayed up way too late watching a baseball game that lasted wayyyy too long, then followed that up by getting up before daylight. lol so please bare with me.

Prior to my ds (who's turning 4 next month) going gluten-free, all forms of milk including casein would cause him the big D) 2 years into a gluten-free diet, he's still CF but his symptoms when given casein are no longer the big D. (more sinus/reflux now) But as they say, anythings possible. One thing to consider, is cross contamination with gluten.. for example. We were giving DS a jelly (this is before he went corn free on top of gluten-free/CF) Gluten cleary was not an ingredient. But he was going days and days with major D. I searched through and tore apart everything I was giving him at that time. It turned out, that the jelly was made on shared lines with gluten, and had just enough CC to stir a muck and do damage. So that's always something to consider.

A few things to consider with tests when you get back to the US. is one has to be consuming gluten for the celiac blood panel and/or the Endoscopy to be accurate. We did not know this until it was too late for our son. While his IgG were pos. they didn't run the TtG or the other one that is specific to Celiac (which is slipping my mind at the moment, I think it's EMA, but too sleepy to be sure) until AFTER he was already gluten-free for a year!!! OF course they were both Neg at that time. Now the Entrolab will be ok to do at any time, but most doctors do not support Dr. Fine and or his tests. I know everyone we've seen doesn't. Now, my son's ped ran genetic tests of her own on both of my kids, and they both have the marker for Celiac as well as Gluten sensitivity, this isn't enough to dx one with celiac disease or GS, but you can't have celiac disease without the genetic marker... so that may be one route for you. I hope this helped some.

Kristie

[CarlaB]

I was diagnosed casein and gluten intolerant by Enterolab. It doesn't matter if the doc accepts it or not because it's all dietary changes and you are in control of that! Also, without an official diagnosis you don't have to worry about insurance denials for pre-existing condition!

If he's not 100% gluten-free, then he would still have symptoms. I had worse symptoms when I cut down on gluten than when I consumed it all the time. I have just as bad of diarrhea from casein as from gluten.

The other benefit of Enterolab is that you don't have to torture your son for the next month by having him eat things that make him sick! He would have to be consuming gluten for it to show up in the current methods of testing. I think it's ludicrous! We would never tell someone to keep smoking till their emphysema test!!