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Casein Intolerance...


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#1 Rachel--24

 
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Posted 02 October 2005 - 06:33 PM

Even though I'm sure I'm totally gluten-free I'm still reacting to something in my diet. I had ghee for the first time last week and had a major reaction. Looking back at my food diary I guess I've eaten dairy most days since I got my Enterolab results back.

I was only worried about gluten since my milk test came back as a 9 (10 being positive). Now I'm wondering if since I was totally off dairy about 3 months before the test could the number have dropped w/out dairy in my diet?

I guess I'm going to have to eliminate all dairy now. <_<

I just want to find out if I have a problem with casein...when should I expect to see improvement if dairy is a problem? If I notice no improvement I'll have to eliminate something else.

I have no gastro symptoms from dairy except bloating. My symptoms are just like gluten symptoms and are never gastro. Could dairy symptoms be the same as gluten?
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#2 Claire

 
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Posted 02 October 2005 - 07:19 PM

I have no gastro symptoms from dairy except bloating. My symptoms are just like gluten symptoms and are never gastro. Could dairy symptoms be the same as gluten?

<{POST_SNAPBACK}>


Yes diary symptoms could be the same as gluten. Even other foods that trigger reaction can produce the symptoms you have associated only with gluten. I have a specific gluten reaction - but I have had it a few times when I know there was no gluten - eating at home - nothing different. I have intestinal reactions to some of my no-no foods and some to gluten as well but the gluten response is dramatic - severe itching without any rash and the most intense cold chills - teeth rattling chills.

You need to identify the other culprits that your body is over reacting to. This can be a slow process. You can go the testing route for food sensitivities. My Naturopathic doctor does not trust these. He thinks they get the foods identified but they identify a whole lot that are false readings and you can't tell what is really reactive and what is not. He puts his patients on three weeks of eating only safe foods - the ones you are absolutely sure of - and then begin to add in one food at a time - a week at a time - if no reaction in a week, go on to try another food. If you do get a reaction you rest at least two weeks before another food is introduced. That is the slow way but it is relying on your body to decide - rather than a test that may be misread. Claire
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#3 cornbread

 
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Posted 03 October 2005 - 01:32 PM

Rachel, I think you and I have very similar cases. I too don't get any gastro symptoms from gluten except bloating, and a couple of weeks ago I figured out something was still giving me the gluten symptoms (brain fog, fatigue, acne, serious irritability!) even though I'd been very careful about not getting any gluten... One time it hit me right after eating a home-made cheeseburger and it clicked - casein! I stopped eating dairy and last week accidentally consumed half a forkful of sour cream and the next day, symptoms ahoy! So I'm pretty sure that's it. Weird that I was fine with dairy for so long and then it suddenly gave me a problem. It's almost more difficult than the gluten thing because cheese became a big substitute for me after I cut out gluten. Also, people presume you really mean lactose when you say you can't eat any dairy and offer you stuff that's lactose free... I think I am more effected by the peptides in gluten and casein than anything else. I really feel like I've been shot with a tranquilizer dart! It sucks but I feel lucky that I don't get gastro issues. Before I went gluten-free though I used to have waves of sudden nausea almost every day. Just seemingly out of nowhere. Thankfully I don't get that anymore. It was like being pregnant for 12 years! :blink: :lol:
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#4 Guest_BERNESES_*

 
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Posted 03 October 2005 - 04:15 PM

I'm so glad this thread started as I have been freaking out. I have been eating gluten-free and extremely stringent about it- but still feeling glutened. For example, on Saturday I ate gluten-free rice bars, gluten-free cereal with rice milk and then Amy's gluten-free mac and cheese 9which is very, very cheesy) and whammo- up at 4:30 a.m. vomiting, diarrhea, chills, night sweats etc. Same thing that happens when I get glutened. So I've been trying to figure out what the heck happened. And then it occurred to me- all that cheese!

So Claire- you're saying that you can get the same symptoms from other intolerances that you do from gluten? I get that freezing cold thing too. Yuck!

I have two questions- one- do ALL dairy products have casein in them (I'm wondering about parmesan cheese as it's what I've always considered it my safe cheese)? Two- if you are casein intolerant, does it, like gluten, cause intestinal damage when you eat it? Or do you just feel yucky? Thanks, Beverly
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#5 bluelotus

 
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Posted 03 October 2005 - 04:44 PM

Hi all, I think the question has been answered by others but I will add my experience as well. Yes, I too have had gluten-like symptoms caused by other foods - specifically dairy, egg, and corn. Dairy was the first to cause problems, then 2 months later eggs, then 5 months later corn. After eliminating each, I felt better in a few days. Good luck.
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#6 Carriefaith

 
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Posted 03 October 2005 - 04:46 PM

I also can get gluten like reactions from dairy products. I usually get mostly GI symptoms from dairy like gas, bloating, D, nausea, gagging/dry vomiting. I am pretty sure that I am casein intolerant, but have never confirmed it with a doctor.
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#7 Claire

 
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Posted 03 October 2005 - 05:00 PM

Those with casein problems might find it interesting to investigate the protein casein. You should be able to track down info on the similarity of this protein to the gluten protein. As I understand it, the molecular structure is virtually identical. I don't know the 'science' or 'physiology' of this but wouldn't it seem that the body- especially a celiac disease stressed body - could confuse these guys and react in the same way to both. Just thinking out loud here. I do know that some doctors take casein as well as gluten away from celiac disease patients. Claire
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#8 Carriefaith

 
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Posted 03 October 2005 - 05:14 PM

Those with casein problems might find it interesting to investigate the protein casein. You should be able to track down info on the similarity of this protein to the gluten protein. As I understand it, the molecular structure is virtually identical. I don't know the 'science' or 'physiology' of this but wouldn't it seem that the body- especially a celiac disease stressed body - could confuse these guys and react in the same way to both. Just thinking out loud here. I do know that some doctors take casein as well as gluten away from celiac disease patients.  Claire

<{POST_SNAPBACK}>


That is very interesting, I'll have to research that :)
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#9 bmorrow

 
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Posted 03 October 2005 - 05:18 PM

Yes,
I also have the same symptons when I eat any dairy as I do with gluten. I didn't realize that you could have an intolerance to casein, until I tested with EnteroLab. I always thought that it was lactose. I have also noticed that I have started having a problem with soy. I have been gluten-free since March 2004, and like so many others, I am extremely sensitive to gluten now.
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#10 julie5914

 
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Posted 04 October 2005 - 10:08 AM

I did not have classic celiac symptoms when I was diagnosed with severe damage. I have been gluten-free now for 4-5 months and suddenly starting have the big D very bad, even though I am gluten-free. I think I have become dairy intolerant as well, though that really, really sucks. It is only a temporary thing while I am just starting to absorb again?

It is strange, to suddenly be reacting to a food group that was fine before. Of course when you think about it, before your body wasn't able to abosorb it, so it must mean my little villi are waking up!
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#11 Claire

 
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Posted 04 October 2005 - 10:18 AM

I did not have classic celiac symptoms when I was diagnosed with severe damage. I have been gluten-free now for 4-5 months and suddenly starting have the big D very bad, even though I am gluten-free. I think I have become dairy intolerant as well, though that really, really sucks. It is only a temporary thing while I am just starting to absorb again?

It is strange, to suddenly be reacting to a food group that was fine before. Of course when you think about it, before your body wasn't able to abosorb it, so it must mean my little villi are waking up!

<{POST_SNAPBACK}>


If you haven't already, check out my message above on this subject. Claire
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#12 Kasey'sMom

 
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Posted 04 October 2005 - 10:18 AM

My dd and I have reactions to dairy as well. We had her tested through YORK several months ago. I'm waiting for my YORK test results to arrive.
In the last few weeks they have changed their tests to include a European and a North American profile. The North American profile tests for 96 foods with a few different cheeses, casein, goats milk, gluten and gliadin. I was really excited to see the addition of casein. When my dd was tested they only tested for dairy itself. The new tested has eliminated a few foods that I wish were included but I'm excited to see my results.

I started noticing I had a problem when I was eating Amy's Rice Pizza & Mac n' Cheese..... :(
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#13 Guest_BERNESES_*

 
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Posted 04 October 2005 - 03:46 PM

It's weird, isn't it? I was starting to feel so much better after going gluten-free that I thought "Oh great!" and then about 4 months in, I started to feel crappy again (this was July and I still feel carppy now :angry: ) so I assumed I was getting gluten in my system somehow or that I was micro-sensitive and couldn't even touch the stuff without obsessively washing my hands and still getting sick (and that may still be the case).

But... since July I've noticed a bunch of other things. Like vodka, which I drank in the beginning with no problem. Last time I drank SKYY, which is gluten-free, I had a gluten reaction, so now I'm thinking alcohol intolerance/problems with distilled products. Then I ate Trader Joe's ratatouille, also gluten-free, had a gluten reaction, so now I'm thinking nightshade intolerance. And my recent incident with Amy's gluten-free mac 'n cheese on Sunday which I'm still recovering from. It was a pretty violent reaction so now I'm thinking casein. It's really starting to bum me out. I was fine with gluten-free but no peppers, eggplants, potatoes, alcohol or dairy? Ugh! And I think soy might be a problem too

So, I'm going to try the elimination diet. I made a list of foods I'm pretty sure are safe for me, foods I'm questioning and foods I KNOW are out (like WRBO). I'm going to go three weeks without any of the foods in question and then try them one at a time, but I'm so frustrated! I'm sitting here starving and have no clue what to eat and I'm so tired from my last reaction that the thought of cooking is just blech! Sorry- I just needed to vent.

On a positive note, I picked up some Tropical Source gluten free, dairy free chocolate bars and they are delicious! I like the rice and the raspberry. maybe I'll just live on them, peanut butter and rice for the next three weeks. :(
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#14 Claire

 
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Posted 04 October 2005 - 07:52 PM

It's weird, isn't it? I was starting to feel so much better after going gluten-free that I thought "Oh great!" and then about  4 months in, I started to feel crappy again (this was July and I still feel carppy now  :angry: ) so I assumed I was getting gluten in my system somehow or that I was micro-sensitive and couldn't even touch the stuff without obsessively washing my hands and still getting sick (and that may still be the case).

But... since July I've noticed a bunch of other things. Like vodka, which I drank in the beginning with no problem. Last time I drank SKYY, which is gluten-free, I had a gluten reaction, so now I'm thinking alcohol intolerance/problems with distilled products.
So, I'm going to try the elimination diet. I made a list of foods I'm pretty sure are safe for me, foods I'm questioning and foods I KNOW are out (like WRBO). I'm going to go three weeks without any of the foods in question and then try them one at a time, but I'm so frustrated! I'm sitting here starving and have no clue what to eat and I'm so tired from my last reaction that the thought of cooking is just blech! Sorry- I just needed to vent.

<{POST_SNAPBACK}>


I would like to make a couple of comments here. You mention having 'a gluten reaction'. 'Reaction' yes but it may or may not be a gluten reaction. The reactions can be the same or similar to many different things. We tend to blame gluten whenever we feel rotten when there may be another or even many other culprits lurking about.

My Naturopathic doctor sets up elimination diets like this: select the foods you feel are 'safe'. Eat only these foods for three weeks. After that begin to intoduce questionable foods - one at a time - each for one week. If no reaction go on to a second food. If you have a bad reaction stop that food and go back to the safe foods list for two weeks and then introduce another food. this is time consuming but he feels your body will tell you the truth very clearly if you approach it this way.

Yours - for whatever it is worth. Claire
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#15 tarnalberry

 
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Posted 05 October 2005 - 10:50 AM

On the "gluten like reaction" from casein question:

If you check out pubmed, you'll find that it IS possible to have enteropathy (villi destruction) from casein proteins, but it is actually VERY rare. (As in, handful of reported cases ever, not the <1% of the population sense.)
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