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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.

Casein Intolerance
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peeptoad    7

Does anyone else also have casein intolerance? If so, what are the typical symptoms? Are they similar to gluten intolerance?

How does one know if they are casein or lactose intolerant? (maybe that's too many questions at once, but I am confused).

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GFinDC    609

Hi Peeptoad,

Casein is a protein in dairy. lactose is a sugar. When you eat hard cheeses, you are mostly eating casein because the cheese making process removes the lactose. So if you take out all dairy for a week, and then eat some hard cheese, like cheddar and it makes you sick, that could be a casein intolerance.

Symptoms are variable, but digestive upset is one that is somewhat common.

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peeptoad    7

So if you take out all dairy for a week, and then eat some hard cheese, like cheddar and it makes you sick, that could be a casein intolerance.

Symptoms are variable, but digestive upset is one that is somewhat common.

Thank you! That's a good idea to test for casein intolerance... think I'll give it a try.

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dreacakes    2

I'm casin intolerant. For me, my symptoms are kinda like a mild version of getting glutened, a little GI upset, a lot of brain fog and that lovely "been hit by a bus" feeling.

Personally, I am only sensitive to cow's milk. I can eat goat and sheep (as long as it is grassfed.) You might want to try a nice goat cheese and see if you can handle it. :)

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peeptoad    7

Thanks dreacakes. I do eat goat cheese (and other dairy) normally, so maybe if I eliminate just cow it will help me figure things out. I also read that most dairy (cow) problems come fro holstein and that milk from Jersey cows might not be a problem (something genetically is different about the milk they produce I think?)... might try to find some Jersey cow substitutes, although I'm not sure if they are labeled differently from other products.

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Oh boy do I know about casein intolerance. I gave up dairy about 2 months after gluten. That was in the summer. Over the holidays I mistakenly had some real cheese. I thought the gluten free pasta dish I bought had the vegan cheese. Well I didn't react too badly so I had cheese again the next day, then the next. Christmas I had trifle with mascarpone cheese and whipping cream. (I made it, so I know it was gluten free) By then my gums were inflamed, I was bumping into things again, constant headaches, tinnitus worsened, slurring my words, tingling in my hands worsened, I couldn't sleep and my skin became really itchy. So for me, I'd say it's pretty much like a glutening. It took over 2 weeks to recover. I'm too afraid to try sheep or goat cheese. Maybe after I've had time to forget how bad I felt. B)

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Seifer    3

Anyone had any luck with raw dairy? I thought I was fine trialing raw grassfed cowcheese yesterday but then the itching, nausea and bloating came back. I guess I'll try to find raw grassfed goat/sheep-cheese next. Man it's so convenient being able to eat cheese, a lot less cooking involved

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chai    0

for me casein reaction is the same as eating gluten as well. As a child my mom would still feed me goats milk and cheese but now i find even that will set me off. best advice is to pick a time when its not inconvenient to get sick and try to test goat and cow milk.

good luck. hope you can still eat some cheese. If not, i find Daiya cheese is great for pizza and other hot dishes. :)

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peeptoad    7

Thanks Chai.

I'm going through a LOT of work-related stress right now and, mentally, I don't think I can deal with yet another dietary restriction. I'm definitely going to try a dairy-free trial when things calm down at work (hopefully in the next month or two) and will test out both sheep and goat products, as well as aged cheeses (to see if there is possiblity of casein intolerance). I have been experiencing some symptoms that would lead me to believe one of those 2 dairy sensitivites is a possiblity: over all body itching with no rash is one, plus I ate yogurt the other day after not having it for quite some time and had moderate GI problems immediately afterwards.

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peeptoad    7

I finally went dairy free last week. It's been almost 8 days and so far I have not noticed a real decline in the symptoms I was having (chronic phlegm/post-nasal drip, etc). I'm going to give it another day or two and then re-introduce hard cheses to see if they bother me. If no problem there, then I'll go back to my nomral gluten-free diet and see how it goes.

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mommida    158

This is actually true!  I was talking to elder milk farmer's daughters and they were telling me about the finer points of milk.  (OK so I nearly blanked out from boredom but did manage to retain some information.) :rolleyes:

Different breeds of cows are known (actually bred for) the small differences to their milk.  i.e. Higher fat content in this breed opposed to that breed.

Pasturization changes things A LOT.

The food the cows eat makes a HUGE difference.  The farmer's know the taste between early season hay and late season hay feedings by taste.  (That is also logical, because the totally knew when those cows got into the onion field too. :wacko:

 

Now you can't have any doubts that I am living in the Midwest! ;)

Thanks dreacakes. I do eat goat cheese (and other dairy) normally, so maybe if I eliminate just cow it will help me figure things out. I also read that most dairy (cow) problems come fro holstein and that milk from Jersey cows might not be a problem (something genetically is different about the milk they produce I think?)... might try to find some Jersey cow substitutes, although I'm not sure if they are labeled differently from other products.

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peeptoad    7

Started eating hard cheese (fresh parmesan, etc) yesterday morning. Been about 24-36 hours and so far no ill effects. I guess I will re-introduce other dairy tomorrow and see what happens. It's not looking like dairy is a major issue for me (aside from drnking a full glass of milk, which I haven't done in about 20 years).

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I finally went dairy free last week. It's been almost 8 days and so far I have not noticed a real decline in the symptoms I was having (chronic phlegm/post-nasal drip, etc). I'm going to give it another day or two and then re-introduce hard cheses to see if they bother me. If no problem there, then I'll go back to my nomral gluten-free diet and see how it goes.

Phlegm/post nasal drip.

Have you tried allergy meds?

It is allergy season and they can literally give me a fever (cedar).

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peeptoad    7

I have tried allergy meds: Benadryl, Sudafed, etc. None if it helps. I've had this chronic phlegm/pnd for about 15 years now and I'm not exxagerating. It started when I was in the Pacific Northwest and I've since lived in Southern California, and now the northeast and I still have it. :(

If dairy turns out not to be the culprit, then it is something I can live with, but it really is a head-scratcher for me. One thing I know for certain: the phlegm started after I had mononucleosis in late 1996. I recovered from the virus fine, but the phlegm has remained ever since.

 

Phlegm/post nasal drip.

Have you tried allergy meds?

It is allergy season and they can literally give me a fever (cedar).

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cavernio    9

Unlike lactose, there are multiple different caseins. I remember reading that only 2 types seemed to cause reactions in celiacs. In any case, different types of milk will probably have different amounts of them.

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peeptoad    7

Thanks for the info from everyone. I ate hard cheese (aged parmesan) for a couple of days earlier this week and started back in other dairy (yogurt, cream) yesterday... so far no bad reactions or anytning new, so I'm assuming dairy is not a major issue for me.

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