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      Frequently Asked Questions About Celiac Disease   09/30/2015

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Dairy Makes Me As Sick As Gluten

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Ugh. I have been having severe reactions to dairy. Lactose free and lactose full. I suspect casein. Does casein have the same effect as gluten in some people? Is it possible to become casein intolerant all of a sudden after being gluten free for 18 months?! Casein makes me a sick as gluten with out the neuro/anxiety stuff. It causes a severe headache, D and bad joint pain.

Milk..it does a body good...well, not this one!!!!!!

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Ugh. I have been having severe reactions to dairy. Lactose free and lactose full. I suspect casein. Does casein have the same effect as gluten in some people? Is it possible to become casein intolerant all of a sudden after being gluten free for 18 months?! Casein makes me a sick as gluten with out the neuro/anxiety stuff. It causes a severe headache, D and bad joint pain.

Milk..it does a body good...well, not this one!!!!!!

I laugh too at those milk commercials. I'm one who has tested negative to lactose, but positive to casein intolerance. And it gives me the same neuro symptoms as gluten (dizzy/weird in minutes) but with the added fun of stomach cramping (which for gluten - not so much). Soy does the same but just the dizzy thing. It's time for me to do a casein challenge and I must say I'm a little nervous.

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Just got back from the GI concerning this issue. He thinks I am lactose intolerant even though it seems all dairy has seemed to bother me but he said the effects are cumulative and it would take 3 or 4 good weeks to really heal. In the meantime if I am still inflamed any dairy or anything fatty or acidy would cause me to feel sick as well. He seems hopeful if I just go lactose free and give it a month with very healthy eating I should improve. I am set up for another endoscopy but I can cancel if all symptoms resolve. He gave me a digestive enzyme with probiotics to take. Even though I thought it might be a casein issue he does not think so as he said those symptoms are more allergic in nature and most people develop a casein allergy earlier in life.I am going for a lactose breath test to confirm this. Just thought I would put this out there for what it is worth since we semmed to be having the same problem.

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Just got back from the GI concerning this issue. He thinks I am lactose intolerant even though it seems all dairy has seemed to bother me but he said the effects are cumulative and it would take 3 or 4 good weeks to really heal. In the meantime if I am still inflamed any dairy or anything fatty or acidy would cause me to feel sick as well. He seems hopeful if I just go lactose free and give it a month with very healthy eating I should improve. I am set up for another endoscopy but I can cancel if all symptoms resolve. He gave me a digestive enzyme with probiotics to take. Even though I thought it might be a casein issue he does not think so as he said those symptoms are more allergic in nature and most people develop a casein allergy earlier in life.I am going for a lactose breath test to confirm this. Just thought I would put this out there for what it is worth since we semmed to be having the same problem.

Thank you so much for posting this! It all makes a lot of sense! I have only been dairy free for 2 days and I expected it to be all better. Now I know that it will take some time.

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Just got back from the GI concerning this issue. He thinks I am lactose intolerant even though it seems all dairy has seemed to bother me but he said the effects are cumulative and it would take 3 or 4 good weeks to really heal. In the meantime if I am still inflamed any dairy or anything fatty or acidy would cause me to feel sick as well. He seems hopeful if I just go lactose free and give it a month with very healthy eating I should improve. I am set up for another endoscopy but I can cancel if all symptoms resolve. He gave me a digestive enzyme with probiotics to take. Even though I thought it might be a casein issue he does not think so as he said those symptoms are more allergic in nature and most people develop a casein allergy earlier in life.I am going for a lactose breath test to confirm this. Just thought I would put this out there for what it is worth since we semmed to be having the same problem.

Stupid doctor. :ph34r:

There are studies showing that gluten antibodies in people with celiac disease can cross-react with casein. It is a different part of milk than the allergenic fraction, so it is NOT related to milk allergy.

For you, casein may be working just like gluten. You need to go as carefully casein-free as you are gluten-free and see if you feel better.

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Could you elaborate on that?

I'll try but the research is kind of sparse. What's known is:

1) Some celiacs are intolerant to dairy, and the reaction is to casein rather than lactose. This has been demonstrated very convincingly and is NOT a result of CC, or cows eating wheat. It is also not an allergy.

2) The reaction is a cross-reaction where anti-gliadin IgA recognizes casein, although not as well as it recognizes gliadin.

So, what happens to your body when your gluten antibodies cross-react to casein? Good question. It's probably different from person to person. There are people on the board who say doctors have told them cows milk can cause villous atrophy in some people. I have not seen that anywhere in the medical literature and I've searched pretty thoroughly, but this would provide a plausible mechanism. In folks with casein reactions there is almost certainly some degree of inflammation from eating dairy, which can make you feel ill.

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I know nothing of the science of this but can comment on my own personal experience.

I read the posts when I was trying to heal from gluten about the possibility of casien causing issues too. I (sorry to say) blew it off at first thinking, "I don't have that issue" to realizing I wasn't getting better BECAUSE of that. In fact, I had several other food allergies as well. I had a weird rash/sores on my head that come back in a hurry if I have casien protiens. I am not sure what your remaining issues are but having gone through this I give the same advice I gave my daughter.

Better to find out than to wonder.

Eliminate it and after I'd say 3 weeks see if anything that has been plaguing you up and gets better. That is how I found out most of my food issues...

best of luck!

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You all are a wealth of information. For me, I KNOW it's not lactose. Lactose wouldn't make me have sores on my face, migraines and joint pain and D for days. I react to casein the exact same way as gluten. Thank you Skylark for posting that. Your posts are always full of good info!

It all is making sense now.

If anyone else needs dairy free, lactose and CASEIN and Gluten free butter substitute. Smart Balance Light is free of all of those things. It DOES have soy oil though if you are watching that. It's a blend of olive, soy and one other oil. Sorry to go off topic..just FYI.

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