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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Looking Closely At Casein
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6 posts in this topic

Ok...so I think I am sensitive to dairy so I tried lactose free cheese and cut dairy right down. It *seems* that dairy still affects me so I'm now looking at casein.

I was just reading up on it - I feel kinda ick after having some chips & salsa & sour cream...turns out sour cream doesn't have lactose (I read that hard cheese, sour cream, and yogurt are naturally lactose free?)...so maybe it is casein? My symptoms (like with gluten) include sinus issues, headache, lethargy (and grumpiness!), and mild stomach cramps. No rash or anything.

From the web site "A Life of Sugar & Spice"....

"Respiratory problems (coughing, wheezing, sneezing, runny nose) are also an issue here. The symptoms are also very similar to those of Celiac Disease or gluten intolerance. "

Hmm...that sounds about right...my nose has been running too (just a little, but enough to keep a kleenex in my pocket). I have also had a cold that lingers...maybe it's not a cold.

So, I guess I'm asking what your experiences are with casein intolerance or sensitivity...I just want to feel well. If something has lactose, it doesn't necessarily have casein, right ? And vice versa ?

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So, I guess I'm asking what your experiences are with casein intolerance or sensitivity...I just want to feel well. If something has lactose, it doesn't necessarily have casein, right ? And vice versa ?

Casein sensitivity is a complicated beast. A couple of things:

1. There is more than one sub-type of casein and many people are only sensitive to one type. That means that cow milk may bother you, but goat milk or sheep milk or buffalo milk won't. No guarantee, however, as there is some of each subtype of casein in each mammal's milk - what varies (significantly) is the proportion of each type.

2. You'll primarily find milk in five forms (approximately) on labels:

- milk/cream - will have both casein and lactose, but the higher the fat content (whole milk or cream) the lower the lactose and casein content

- butter - pretty much just milk fat, BUT there are trace amounts of protein; ghee (clarified butter) should have everything but the fat removed, but there is still risk of trace amounts of protein

- casein (and it's derivatives, caseinates) - the main milk protein, but used for a lot of derivatives, the most common seeming to be sodium caseinate, which is used in very small quantities, but still contains some casein

- lactose - milk sugar, which you may see in some prepared foods, but will also find in pharmaceuticals (it's a common binder/filler) where it is significantly more pure. there is a risk of trace casein (contamination, basically) in pharmaceutial lactose, but it's quite low

- whey - the protein in milk that isn't casein, but separation methods leave it quite likely to have small quantities of casein

3. Everyone's individual sensitivity level varies. I avoid milk/cream/cheese/yogurt/etc. but am fine with small quantities of milk fat or pharmaceutical lactose. I generally avoid larger quantities of things like butter, since the exposure would add up. Goat cheese certainly seems to do better in my system that cow, also. This is a trial and error sort of thing, unfortunately.

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I think my reaction to casein is non-typical, so not much help I suppose. But I can't sleep if I get any. Plain old super go juice for me. I won't even feel sleepy for 2 or 3 days and then slowly it tapers off. I get some GI problems to but not as bad as gluten.

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I don't suppose there are any tests for casein sensitivity ???

Is there a lot of casein in chocolate ?

I'm really having a hard time with this - I ate some Purdy's chocolate last week and ugh ! Maybe it was contaminated (gluten). Maybe something else I ate was...and/or throwing in some milk products was too much. The only dairy I regularly have is half & half in my coffee. I do know if I'm already down, dairy gets me.

I had Riceworks nachos last night with a minimal amount of lactose free swiss cheese...mild sinus pressure this morning but who knows ? Is it casein over lactose because my sinuses get all fired up (immune response) ?

Man, I hate this - as with gluten, it's all a guessing game. Especially since once things are out of whack it seems everything affects me - if I get glutened it hurts to eat period, then I start to suspect other foods when maybe it's just the gluten...or the casein. And, like gluten, it seems symptoms are different with cross contamination versus ingesting the culprit itself - and it's cummulative since I can get it in my coffee ok, but much more & I'm done. :(:(

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I don't suppose there are any tests for casein sensitivity ???

there is an allergy skin test for casein

there is also a blood test called a milk subfraction test that tests for sensitivity to to at least 4 components of the dairy if I remember right

the effect has always seemed cumulative for me too and I get significant increase in sinus problems with it too

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If you are sensitive to casein then using it in coffee every day is not a great idea. It's simple to do a test and find out for sure. You eliminate all dairy for a couple weeks. Then eat some hard cheese and see if you react. Hard cheeses have little lactose but lots of casein. Eat the cheese for a couple days and note any changes in how you feel.

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