Casien Intolerance?

[TCA]

I have been very active on this forum in years past, but motherhood has prevented me from spending hardly any time on the computer period lately. My 5 y/o son has been gluten-free for over 2 year now. the past few weeks, he has started getting sick again, having loose stools and lots of vomiting. He has probably vomited 2-4 days of every week for the past 4 weeks. At first I thought it was just a recurrent virus, but he just started vomiting again and I'm starting to get really concerned. My mommy instinct is telling me that dairy could be the culprit, but I have no particular reason to think that. His behavior has been worse lately. He's been very emotional and had a lot of outbursts. I don't know if it's related or what. I'm 99.9999999999% sure that it's not recurrent gluten exposure since I only cook gluten-free and we seldom eat out. I just thought I'd see if anyone else out there has seen anything similar and if so, was it related to another food issue?

Thanks!

[Darn210]

I think you may be right . . . could be dairy. You might see if he responds to a lactose free diet first, though. Lactaid milk and chewable lactaid tablets with dairy products. My pediatrician says that lactose intolerance often starts around the age of 5 as that is historically/evolutionarily(is that even a word?) when children were weaned . . . and they didn't switch to cow's milk.

[Mom23boys]

I would go completely milk free rather than just lactose free. While digesting the sugar is a problem for many, it basically sticks to the tummy area. The casein is the protein that is associated with behavioral issues and can have a variety of issues like gluten.

[TCA]

I took my son off of dairy in every form the day i started this post. He has improved and feels much better, thankfully. Now I'm trying to figure out what to feed the child. I have been dairy free before while breast feeding my daughter who had a milk allergy, so I have a pretty good grasp of what to avoid, but I'm having a hard time with understanding his sensitivity level. Could it be lactose, casein, or both? I took him to an allergist and everything was negative, but he said he thought it was a lactose issue. I know from being a part of this forum that casein also causes big problems similar to celiac. I don't know if I should try one or the other or just keep on being 100% dairy free. I also wonder if CC issues would be as serious with dairy as they are with gluten.

Any advice? I'd love to hear how casien or lactose impact other people's GI system and how they stay healthy.

thanks!

[Ursa Major]

I would stay completely dairy free for a month, and then try lactose free milk for a couple of days. If his symptoms return, you will have your answer that he is casein intolerant. If he is fine, keep giving him lactose free dairy.

Mind you, it might take a little time for symptoms to return, in which case it would be casein after all.

But for now, casein free is the way to go.

[Lizz7711]

I took my son off of dairy in every form the day i started this post. He has improved and feels much better, thankfully. Now I'm trying to figure out what to feed the child. I have been dairy free before while breast feeding my daughter who had a milk allergy, so I have a pretty good grasp of what to avoid, but I'm having a hard time with understanding his sensitivity level. Could it be lactose, casein, or both? I took him to an allergist and everything was negative, but he said he thought it was a lactose issue. I know from being a part of this forum that casein also causes big problems similar to celiac. I don't know if I should try one or the other or just keep on being 100% dairy free. I also wonder if CC issues would be as serious with dairy as they are with gluten.

Any advice? I'd love to hear how casien or lactose impact other people's GI system and how they stay healthy.

thanks!

My daughter and I have been Gluten-free Casein-free for 3 months now. Enterolab testing showed sensitivity to gluten and casein (and soy and eggs). WE use rice milk for cereal, and just don't do cheese, ice cream (Rice Dream makes a good organic gluten free casein free "ice cream" flavor called "mudd pie"), yoghurt, or real butter. I'd also avoid candy with dyes in them as these were causing major behavioral issues for my daughter, especially red#40 and Yellow#5. Once you get used to just not having these foods, it gets easier. The only thing she misses is cheese. I miss the ease of yoghurt as a snack, but we just do other things like more fruit, gluten free pretzels/cookies, hummus, etc.

Our reactions to casein tend to be physical, whereas my daughter's reactions to gluten seems more behavioral. With casein, she'll get a headache. I'll get a headache, or joint pain, or extreme fatigue and brain fog, bloating , gas etc. also.

good luck,

Liz

[TCA]

My daughter and I have been Gluten-free Casein-free for 3 months now. Enterolab testing showed sensitivity to gluten and casein (and soy and eggs). WE use rice milk for cereal, and just don't do cheese, ice cream (Rice Dream makes a good organic gluten free casein free "ice cream" flavor called "mudd pie"), yoghurt, or real butter. I'd also avoid candy with dyes in them as these were causing major behavioral issues for my daughter, especially red#40 and Yellow#5. Once you get used to just not having these foods, it gets easier. The only thing she misses is cheese. I miss the ease of yoghurt as a snack, but we just do other things like more fruit, gluten free pretzels/cookies, hummus, etc.

Our reactions to casein tend to be physical, whereas my daughter's reactions to gluten seems more behavioral. With casein, she'll get a headache. I'll get a headache, or joint pain, or extreme fatigue and brain fog, bloating , gas etc. also.

good luck,

Liz

Thanks for the info. My son only ate cheese on pizza anyway and NO other dairy, so the main change has been in the way I cook. My biggest question is about how sensitive CF individuals tend to be. I know if I even touch gluten and touch his food, he will get violently ill, but I just don't know with casien or lactose. How sensitive are you and your daughter?

Thanks,

Tanya

[Mom23boys]

Thanks for the info. My son only ate cheese on pizza anyway and NO other dairy, so the main change has been in the way I cook. My biggest question is about how sensitive CF individuals tend to be. I know if I even touch gluten and touch his food, he will get violently ill, but I just don't know with casien or lactose. How sensitive are you and your daughter?

Thanks,

Tanya

Some can be very contact sensitive. It is one of those things you are going to test out yourself to find his sensitivity.

For pizza...we chop up a piece of bacon into little bits and cook some ground meat in there. It gives it the salt and greasy feeling you crave with cheese.

[AliB]

Have you looked at the Specific Carbohydrate Diet? It is fantastic for helping those with all sorts of problems, but particularly digestive.

I have noticed this a lot on the forum, that those who are on gluten-free seem to be ok for a while then get sick again. It's annoying 'cos you just get to the point where you think you have it sussed and you end up back at square one!

It seems that it is not always just gluten that is the problem, but carbohydrates in general, particularly complex ones, so for instance, honey would be ok because it is a mono-saccharide, but sugars and syrups are not, because they are more complex di- and poly-saccharides which the body struggles to digest - they don't feed us, but they feed the bad little blighters in our gut, encouraging them to get up to all sorts of nasty tricks!

I have been reading through the reviews in Lame Advertisement for Elaine Gottschall's book "Breaking the Vicious Cycle". Instead of the usual half dozen or so there are 188! And about 98% of them are totally positive. She gained degrees so that she could scientifically research this diet after her little daughter was cured by it. If you Google the book title it will take you to her website and if you select 'Beginners' it will give you the principles of the diet.

Apparently, whilst 20% of the population can tolerate carbs, the other 80% can't. I have realised that whilst gluten and dairy are part of my problem, they aren't the whole. I have bought the book and have already started the diet and so far it's been ok, but this is only the 2nd day so I can't yet show any personal testimony, but it does make a lot of sense.

Whilst it cuts out most carbs it is not quite as restrictive as you might think initially. Most feel though that they would rather restrict and be well, than eat what they want and be ill! It does cut out dairy although she does advocate probiotic yogurt, preferably home-made, in which the lactose and casein is pre-digested by the bacteria so is usually tolerated by those who are intolerant to basic dairy - I can and I am very dairy intolerant. It can be sweetened with honey and added to berries and fruit. There are loads of SCD recipes on the internet.

It is a struggle trying to pinpoint what the triggers are, isn't it. I think that is why this diet appeals, as it takes you back to basics and then you gradually introduce foods over a period of time. Some have found that after being on it for a while they are then able to tolerate some non diet foods occasionally.

I hope you manage to find some solution. It is worrying enough when it is yourself, but when it is your children you are so desperate for them.

[AliB]

Just out of interest the Pecanbread website which is the SCD primarily aimed at kids with autism and ASD (for which they are getting fantastic results!), but useful for anyone with stomach/digestive issues, has a great way for both children and adults of explaining what happens in the gut to the different carbohydrates and what they do. It is very interesting!

Here is the link (if the site will let me post it! If not, go to Pecanbread and look up SCD Science.

Open Original Shared Link

[AliB]

Sorry - oops, forgot the link. Open Original Shared Link

[TCA]

AliB,

It's funny you mention SCD. I had just read the book and was considering doing it as the next step if GFDF didn't work. Thankfully, it has worked so far, but I haven't forgotten about SCD if it does become necessary. I really do appreciate the advice. Another problem I have is the fact that he is sooooooo picky. He's down to just a handful of foods that he will eat, so it is a daily struggle to get healthy foods down him.

Mom23boys,

Thanks for the advice on pizza. I did something similar the other night and he ate it well. Thank God for bacon!!!!

[AliB]

I know exactly what you mean about picky - my youngest grandson is 4 and he has always been terribly picky, although I'm not sure he was so bad as a baby. He was diagnosed with ASD although he is actually quite bright and demonstrative, but has learning delay and is only in the 25th percentile for height.

For a long time he would only eat sausages and baked beans but will now eat a slightly better diet. The only veg he will eat though is potatoes, broccoli and carrots and that only from fairly recently. He never eats fruit unless forced, and then only under extreme duress! He may condescend to eat half a banana or a few grapes but will not touch strawberries or any other fruit, yet his older brother loves fruit! If he had his own way he would live on chocolate and chocolate cookies! He is addicted to carbs! Fine subject for the SCD if ever I saw one!

My daughter is selling her house and is hoping to move down with us shortly so I hope that between us we can get to grips with his diet. His older brother is getting stomach problems and D, but we are not sure if it is food related or stress-related from the impending move - he is only 6 and they aren't always very articulate about their feelings at that age! She is putting him on gluten-free to see if that helps so we will have to see.

I have noticed that some who have posted about their children have found that once they have been taken off gluten and/or dairy or whatever their particular antagonist/s are, they seem no longer to be picky and are happy to eat a much more varied diet.

[AliB]

I know exactly what you mean about picky - my youngest grandson is 4 and he has always been terribly picky, although I'm not sure he was so bad as a baby. He was diagnosed with ASD although he is actually quite bright and demonstrative, but has learning delay and is only in the 25th percentile for height.

For a long time he would only eat sausages and baked beans but will now eat a slightly better diet. The only veg he will eat though is potatoes, broccoli and carrots and that only from fairly recently. He never eats fruit unless forced, and then only under extreme duress! He may condescend to eat half a banana or a few grapes but will not touch strawberries or any other fruit, yet his older brother loves fruit! If he had his own way he would live on chocolate and chocolate cookies! He is addicted to carbs! Fine subject for the SCD if ever I saw one!

My daughter is selling her house and is hoping to move down with us shortly so I hope that between us we can get to grips with his diet. His older brother is getting stomach problems and D, but we are not sure if it is food related or stress-related from the impending move - he is only 6 and they aren't always very articulate about their feelings at that age! She is putting him on gluten-free to see if that helps so we will have to see.

I have noticed that some who have posted about their children have found that once they have been taken off gluten and/or dairy or whatever their particular antagonist/s are, they seem no longer to be picky and are happy to eat a much more varied diet.

[AliB]

Sorry about repeating the post twice - my broadband connection failed just as I was sending it, and thinking it hadn't gone, when it had reconnected, I sent it again! Ooops.

[Lizz7711]

Thanks for the info. My son only ate cheese on pizza anyway and NO other dairy, so the main change has been in the way I cook. My biggest question is about how sensitive CF individuals tend to be. I know if I even touch gluten and touch his food, he will get violently ill, but I just don't know with casien or lactose. How sensitive are you and your daughter?

Thanks,

Tanya

I'm actually still figuring that out. As time goes on, I know my self that I am becoming more and more sensitive to the point where if I were to have a glass of milk right now, i'd worry about anaphylaxis because lately when I have somewhat big amounts of casein, my throat gets tight and my whole head feels tight/pressured. However, that said, I still don't worry about a dab of butter once in awhile. I don' t intentionally eat anything with casein in it anymore aside from MAYBE preparing boxed cookies with some butter in the ingredients. My daughter on the other hand, has been still eating milk chocolate once in awhile also as well as nutella on gluten-free bread which has milk in it. No noticeable reaction to that. But yesterday at a friend's house she had 3 pieces of bread with nutella on it (she normally only has one), and last night in the middle of the night her legs were aching and this morning she had a bout of diarrhea and stomach pain. It seems to be a matter of how much exposure for us. If she has ice cream or cheese, she gets a headache fairly quickly.

Those are our experiences so far. Eveyone is different though...the longer you have it out of the diet, the more you will begin to sort out what his reactions are to the casein.

good luck!

Liz

[TCA]

Thanks ladies. I guess Cole must be pretty sensitive since he was only mostly getting what I baked with. The only food he will eat is gfdf pizza, bacon, gfdf pancakes, fruit, Gluten-free Casein-free cupcakes (mostly icing), kinnitoos, and occasionally some grilled meat. My daughter eats just about anything and I cook all the time, so it's not a matter of only being exposed to junk. It's very exasperating, but he's lost so much weight that for now we're just trying to get him to eat anything. We'll worry about being more nutritious later.

AliB - hope your grandson feels better soon!

[Lizz7711]

Thanks ladies. I guess Cole must be pretty sensitive since he was only mostly getting what I baked with. The only food he will eat is gfdf pizza, bacon, gfdf pancakes, fruit, Gluten-free Casein-free cupcakes (mostly icing), kinnitoos, and occasionally some grilled meat. My daughter eats just about anything and I cook all the time, so it's not a matter of only being exposed to junk. It's very exasperating, but he's lost so much weight that for now we're just trying to get him to eat anything. We'll worry about being more nutritious later.

AliB - hope your grandson feels better soon!

Are you checking ingredients for preservatives, food dyes, and artificial sweeteners and MSG? These can be major causes of behavioral issues. Also, if his intestines are damaged, some of the things you mentioned like bacon and red meat might be kinda tough on his system. But I know it can be hard if that's all a kid likes! I'd just be sure to get organic meats, nitrite free bacon etc if you're going to still give it to him. Will he eat things like hummus with cucumber or carrots?

anyway, hope he feels better and starts gaining some weight!

Liz

p.s. like the Romans verse

[AliB]

Elaine Gottschall in her book, Breaking the Vicious Cycle explains what happens when we eat carbs.

Mono-saccharides (single molecule carbs) like honey, fruits, some vegetables and well-fermented yogurt (where the lactose and casein is broken right down, unlike the commercial yogurts which are only short fermented), can cross the gut into the blood stream and be used for energy. They rarely, if ever cause any reaction.

Di-saccharides (twin molecule carbs) like sugar and milk due to damage to the gut causing a lack of enzymes from high over-consumption of the foods, cannot cross into the bloodstream and remain in the gut acting as food for the bad bacteria that not only ferment the carbs causing gas and bloating, but also produce acids that further the damage, setting the stage for different problems all over the body due to bacterial overgrowth and malabsorption issues.

Poly-saccharides (multiple molecule carbs) like grains and starches (wheat, rye, barley, oats, potatoes, and some beans, are even less able to be broken down and equally cause problems.

If our diets contain a high proportion of the di- and poly-saccharides then we will have problems. Lactase is apparently formed at the tip of the villi and will often be one of the first things to suffer as the gut becomes damaged. The more complex carbs we consume, the worse the problem gets.

Stopping gluten may be withdrawing a certain amount of the Poly's out of our diet and we may be able to carry on for a while, but the damage with continue - maybe not as bad as before and the gut may even recover to a certain extent, but the continuation of consumption of other carbs will continue to damage other areas of the gut and it will eventually succumb again to another intoleration.

It seems that the only proper way to help the gut heal properly is to completely withdraw all the problematic foods at the same time and allow the gut to heal completely and then, once that has happened, maybe some of these other carbs may be tolerated occasionally, rather than as an everyday consumption.

That is why the SCD makes such sense.

[TCA]

My husband hunts, so most of the meat we eat is organic. We live in the country, so organic is something that is a way of life. I hate feeding him the nitrites too and get the hormel natural bacon a lot to try to help that. As for artificial additives, most of those are cut out due to the other things he cannot eat, so he gets very little. I bake all of his bread, etc, so I know he's getting good stuff.

The problem with the carbs is the fact that he will eat absolutely no veggies - none. It is soooo frustrating because we have garden veggies on the table every night and it is a constant battle. We made him eat a carrot the other night and he threw up. I have figured out how to disguse eggplant as a pizza crust so he thinks he's eating pizza instead. But that is it. He does good with fruits, though. I read the book and understand SCD. We may have to go that route, but for now, GFDF seems to be working.

I appreciate all the help!

[Lizz7711]

My husband hunts, so most of the meat we eat is organic. We live in the country, so organic is something that is a way of life. I hate feeding him the nitrites too and get the hormel natural bacon a lot to try to help that. As for artificial additives, most of those are cut out due to the other things he cannot eat, so he gets very little. I bake all of his bread, etc, so I know he's getting good stuff.

The problem with the carbs is the fact that he will eat absolutely no veggies - none. It is soooo frustrating because we have garden veggies on the table every night and it is a constant battle. We made him eat a carrot the other night and he threw up. I have figured out how to disguse eggplant as a pizza crust so he thinks he's eating pizza instead. But that is it. He does good with fruits, though. I read the book and understand SCD. We may have to go that route, but for now, GFDF seems to be working.

I appreciate all the help!

One other trick to get veggies in is to get one of those hand-held mixers, cook lots of veggies with your spaghetti sauce and then grind it up in there. If you use a blender, just be sure to keep some extra spaghetti sauce separate to add to the mix as when you blend it it turns a different color and texture and he may figure it out!

same thing with soups, blend it up and he'll never know the veggies he's getting. My daughter likes split pea soup as well. Another one kids seem to like is potato leek (blended).

good luck and take care,

Liz