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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Casein Intolerance...
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58 posts in this topic

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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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

<{POST_SNAPBACK}>

Casein is the protein in milk. It follows that all cheeses made with milk would have casein. Now some people are lactose intolerant and not casein sensitive. You have to get that figured out by testing. As for intestinal damage - all 'reactive' foods that are leaking through the intestinal wall are causing damage.

How do I know this? I was originally diagnosed with Type 11, Delayed Food Reactions. I was alerted at that time by Immuno Labs about villi damage and encouraged to add L-Glutamine to my supplements to help heal the damage and to adhere strictly to a diet that did not contain reactive foods. Those foods included all grains except oats and rice. Unfortunately the tests at that time did not imply a gluten response - only a reactive response to the grains.

I only found Celiac when my research turned up that the intestinal damage done by Delayed Food Allergy responses was identical to that produced by Celiac. That is when I started pushing my doctor about celiac.

That issue is still unclear. I am currently diagnosed with Cerebellar ataxia and upcoming tests should confirm if that is a genetic ataxia or a gluten induced ataxiz subsequent to either celiac or non-celiac gluten sensitivity. Claire

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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.)

<{POST_SNAPBACK}>

Perhaps I was misunderstood. I was saying that symptoms do not always tell you what you are reacting to. Most of the time they probably do but you certainly can have a reaction to something and think it is gluten when it is really something else. That's why having a picture of all the reactives in your diet is important.

Maybe what pubmed says about damage done by casein is true. I know from personal experience with absolute certainity that villi damage can be caused by other reactive foods - not just those containing gluten. Another reason for eliminating these offenders - the leaky gut does not heal if reactive foods are being eaten - gluten free or not. As long as leaky gut persists - reactions to foods will occur - and one can guess at whether the culprit is gluten or something else. Some people have such a distinctive reaction to gluten that they can be sure. With the other delayed food reactions it can be a real guessing game. I have been playing THAT game for 15 years. Claire

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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. 

<{POST_SNAPBACK}>

Well I don't have to worry about any *false* readings with my tests. My IgG delayed-onset tests were negative for ALL foods. :blink:

I only reacted to mustard and alfalfa (barely).

I had these tests done when I was at my abosolute worst. Not absorbing anything...losing weight...reacting to EVERYTHING. I'm pretty sure I had leaky gut which was causing all the reactions but tests show no real immune response to any foods. Also Enterolab came back negative for casein, yeast and eggs. All IgE true allergy tests have been negative as well. The only thing I've actually tested positive for was gluten. I think my Enterolab casein test may have been positive if I'd still been consuming dairy but I wasnt for a few months. I scored a 9 on that.

I guess after having IgG, IgE and IgA tests all come back negative theres not much left after that. Most of my *reactions* come after a glutening. Can Leaky Gut cause symptoms even though there is no actual sensitivities?

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Well I don't have to worry about any *false* readings with my tests. My IgG delayed-onset tests were negative for ALL foods.  :blink:

I only reacted to mustard and alfalfa (barely).

Can Leaky Gut cause symptoms even though there is no actual sensitivities?

<{POST_SNAPBACK}>

Lucky Rachel. I had reaction to 28 out of 100 foods tested - almost all on the high side (first test)

Second test (after removing bread from my diet as well as cakes, pies etc.) all the grain reactions still showed but antibodies were reduced. That's where I got into trouble. Not knowing that it was the gluten not the grains that was the problem. I am now testing myself following a nauropathic doctor's directives and seeing what my body says - rather than the test results. There are foods I do not need to test - I KNOW. There are others where I think I may be okay. We will see.

Leaky Gut has to have a cause? I know (for sure) that Celiac and Delayed Food Allergies both cause this. I imagine that there are other things that do as well. I am always researching so if I find out anything more about that I will post it. Claire

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i, too, am having occasional "glutened"-like symptoms after being strictly gluten-free for a couple months. :( most people i've talked to have told me it takes the body a while to heal, and that that is not abnormal. plus, my symptoms are not as intense as they were before diagnosis. however, i notice that when i have dairy, it seems to be linked. this makes me really sad, because like some others have said, i lean heavily on that food group since cutting out bread and whatnot. i see that no one has posted on the possible temporariness of the dairy and/or casein intolerance... is there anyone out there who cut that stuff out but was able to add it back in after a while? i could do with a light at the end of the tunnel...

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My GI told me to wait 6 months before trying dairy again. I guess I wont know till then if I can eat it w/out symptoms or not. :(

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Thanks for all the information- my reactions feel very much like the reactions I get when I have ingested gluten, even though I know I haven't (or am pretty darn sure). So, I am eliminating all dairy from my diet for the time being, as well as distilled products, alcohol , and nightshades. But I'd really like to get tested. The question is, can I just get these food intolerance tests done through a regular doctor or should I go through Enterolab, York or ImmunoLab?

I know it takes a long time to heal but I am clearly, in my opinion, reacting to other foods. Thanks, B

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Found this thread again when I was searching for casein stuff. For those that have tested positive for casein intolerance, are your symptoms similar to lactose intolerance? Just wondering if there is a way to figure out what is bothering me with dairy - lactose or casein - based on my symptoms without a blood or stool test.

I tried cream cheese today and have been off dairy for sometime (6 mo +), and took a gluten-free lactase pill just in case. In general, I feel fine, though am a bit tired (which may be from an accidental recent glutening). I hope its only lactose that is the problem. I've gotten so sick of doing without dairy (esp since the Gluten free Gourmet book is full of tempting recipes loaded with dairy). Anyway, sorry not to stick with the original topic of this thread entirely, but any input is appreciated.

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Found this thread again when I was searching for casein stuff.  For those that have tested positive for casein intolerance, are your symptoms similar to lactose intolerance?  Just wondering if there is a way to figure out what is bothering me with dairy - lactose or casein - based on my symptoms without a blood or stool test. 

I tried cream cheese today and have been off dairy for sometime (6 mo +), and took a gluten-free lactase pill just in case.  In general, I feel fine, though am a bit tired (which may be from an accidental recent glutening).  I hope its only lactose that is the problem.  I've gotten so sick of doing without dairy (esp since the Gluten free Gourmet book is fully of tempting recipes loaded with dairy).  Anyway, sorry not to stick with the original topic of this thread entirely, but any input is appreciated.

<{POST_SNAPBACK}>

My casein intolerance can mimic not only my dairy but my gluten also. I can get a rash from both dairy/lactose and I have noticed a rash type thing slightly different from the gluten. With dairy/lactose and casein is the lower abdominal cramps and the diarrhea and the diarrhea also goes with the gluten.

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Found this thread again when I was searching for casein stuff.  For those that have tested positive for casein intolerance, are your symptoms similar to lactose intolerance?  Just wondering if there is a way to figure out what is bothering me with dairy - lactose or casein - based on my symptoms without a blood or stool test. 

I tried cream cheese today and have been off dairy for sometime (6 mo +), and took a gluten-free lactase pill just in case.  In general, I feel fine, though am a bit tired (which may be from an accidental recent glutening).  I hope its only lactose that is the problem.  I've gotten so sick of doing without dairy (esp since the Gluten free Gourmet book is full of tempting recipes loaded with dairy).  Anyway, sorry not to stick with the original topic of this thread entirely, but any input is appreciated.

<{POST_SNAPBACK}>

It is frustrating if you know you have a dairy sensitivity but don't know whether it is lactose or casein. I believe the literature supports that with celiac patients it is most often casein. I have a relative who tried taking the lactaid pills and they did not work at all which suggests that she is okay with lactose but not with casein. It's a tough way to test. Claire

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