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Rachel--24

Casein Intolerance

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I've just recently discovered I'm casein intolerant. To me its WAY worse than going gluten-free. I love dairy more than any other food....I'm a total addict.

Anyways the dairy, even in tiny amounts (such as in supplements) has really caused me problems the past year. I think its the main reason I never recovered even with being very strict on the gluten-free diet. Its only been 12 days since going casein free and I'm feeling much better. Anyone know how long it takes for all symptoms to cease?

Its hard to imagine not having cheese (mac and cheese was a main staple for me) or milk again. Before I ever got sick I used to tell people I could never live w/out milk. I HAD to have it with every meal and I would sometimes get uncomfortable if I didnt have milk readily available. This should have all been a red-flag to me but I was probably in denial. I have intense cravings for it and I dont have that problem with gluten.

I want to know if when I'm fully healed and healthy...could I indulge in say one Baskin Robbins ice cream sundae....like for my birthday or something? Since its not the same as consuming gluten (or is it?) can I cheat a few times a year without causing too much problems? Does anyone have casein intolerance and get away with occassional treats? I miss Starbucks. :( Does all Starbucks have dairy?


Rachel

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You'll have a hard time stopping after just one ice cream. :) I used to still eat some dairy last summer and once I started with the ice cream I was hooked... but now that I've been completely cf for a while, even a little bit gives me just as much grief as a glutening would, so I don't want to try anymore. I'm not avoiding casein in derivatives though, or terribly concerned about cc. And I'm ok with goats cheese thankfully.

Pauliina

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I discovered my casein intolerance much sooner than I discovered my gluten intolerance. I'm now to the point where avoiding dairy is just not that big of a deal. Try to stay completely casein-free for several months. You might find that once it's out of your system, you'll cravings will majorly subside, or completely go away. I used to be a dairy addict myself, but now the mere thought of drinking the bodily fluid of a cow is enough to make me feel sick :)

I think I mentioned on another thread that (for some odd reason) I tried raw goat's cheese after being completely dairy-free for many many years. A few bites were enough to make the dairy cravings come back and eventually it just started making me sick. It was like I knew right away I was craving it, which should have told me to stop eating it, but the cravings made me eat more than I should have. It took about a month for all the associated symptoms to go away (the symptoms weren't *terrible* - but I might as well just not eat the cheese - it could probalby lead to much worse problems).

Even though it seems like giving up dairy is really really hard, there's definitely hope that it will get easier. For motivation, try doing some research on all of the nasty stuff that's in conventional pasteurized milk.

I know how you feel about Starbucks though. I can literally see Starbucks from my apartment, and it's just not as much fun to order a chai tea (just the tea bag not the latte - as I have to explain every time :) )

I'm no expert, but I'd say after several months of being completely casein-free, see if you still want to indulge. You really might not want to anymore depending on how you feel. :)


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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I agree, cf is much harder than gluten-free. I was a cheese addict. Cheese is very filing and so it was great for a skinny person like me.

I think it has been about two months that I have been 100% casein free and I feel completely normal, finally, for the past week. I've even been introducing new weird foods the past few days to see what my body can handle. Nowmally, too many new things would cause D, but nope, normal bm's only and no bloating. I have not cheated once with gluten. I don't eat anything knowingly that was produced in a gluten facility. However, I will eat things produced in a milk facility. I have tried in the past to re-introduce cheese, but I always get ill effects, so I have stopped trying. I still hope that one day I can eat cheese again.

Too bad you can't have soy, because Starbucks has a great soy latte.


Tapioca intolerant

First cousin dx'd with Celiac Disease

Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.

Gluten-free since June 2005

Dx with IBS February 2005

Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)

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You'll have a hard time stopping after just one ice cream. :)

I thought about this. I think I have great willpower though. I thought I could never quit smoking and I did it...I've never cheated since going gluten-free...I *think* I could do one ice-cream every few months as a treat. :) If it caused me alot of grief it wouldnt be worth it.... if its gonna be like a glutening then forget it.

I'm just wondering if anyone can do it occassionally and not feel too bad.

Youre lucky to be able to have some goat cheese. I havent done well with goats milk or cheese. I've been sick the whole time though so maybe if I give myself time to heal sensitivity could change. I guess it could become worse though.


Rachel

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I gave up both gluten and dairy in August. I am a cheese addict!! (Literally, at age 3 my mother would find me biting into blocks of cheese - wrappers and all!). There are a lot more gluten-free choices for me if I can have dairy. I tried goats cheese last weekend and had some D, but then I had more D this weekend... so now I'm back to dazed and confused, maybe I should try cheese again? :blink:

Not sure that this helped you, except you have my complete understand and sympathies.

Good luck, and feel better.


Ev in Michigan

GFDF since 8/20/05

Negative Bloodwork ~

Dr. encourages me to trust my

"Gut Reaction"

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I'm no expert, but I'd say after several months of being completely casein-free, see if you still want to indulge. You really might not want to anymore depending on how you feel. :)

I think the cravings will probably subside with time. I'm not as worried about giving up cheese so much as stuff like ice cream, starbucks and whip cream. For some reason I've been completely obsessed with whip cream since going gluten-free. My doctor did tell me to avoid dairy for 6 months but I was eating things that didnt have obvious dairy and I was getting sick....not knowing why. I was eating cool-whip...it said non-dairy. :(

Just a few weeks ago I decided to try cheese again after 1 year w/out it. I bought a big block of swiss cheese. I could not stop eating it and I ate almost all of it that night...I finished it in the morning. I know what you mean about the cravings taking over because it was like I couldnt control myself. I also didnt know I was casein intolerant so maybe now that I'm aware of it I could control myself better if I ever try ice cream.

Is there any way to have stuff like cheesecake or any kind of whipped topping for deserts thats casein free?

I think it has been about two months that I have been 100% casein free and I feel completely normal, finally, for the past week. I've even been introducing new weird foods the past few days to see what my body can handle. Nowmally, too many new things would cause D, but nope, normal bm's only and no bloating.

Thats very encouraging. :) I've been feeling like I did pre-gluten-free for the longest time now. I actually started thinking something else was wrong with me since the gluten-free diet wasnt working anymore. I thought maybe it was the wrong diagnosis. Hopefully in a couple months I'll be feeling great too. :D

I probably wont worry about c.c. as much as with gluten but I guess I'll have to wait and see how sensitive I am.


Rachel

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I also didnt know I was casein intolerant so maybe now that I'm aware of it I could control myself better if I ever try ice cream.

You know that's probably true. When I was eating ice cream I had given myself permission to eat it since it was lactose free and gluten free, and of course then I was eating it all the time. :D I didn't actually feel all that awful then, it was during the holidays though and I was more tired all the time than usual but since I didn't have to work I didn't mind.

I like coconut milk as a substitute for cream, thick coconut milk as a dressing for cake is great. This week I have been making pancakes with mashed banana, coconut milk and corn starch, cooked in plenty oil. The only problem is I don't want to eat anything else, lol.

Pauliina

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Guest Robbin

There seems to be alot of us now that are casein intolerant. I am struggling with this too, Rachel, and I was a major cheese lover. I thought it was lactose intolerance, until I got my test results back. So much worse than just gluten-free and there isn't a lot of information out there. I was super strict for the past three weeks and did feel better, but last week I ate some mozzarella in an omelette and I was sick with the big D sooooo bad for two days. It was as bad as being glutened!! I couldn't believe it. That really opened my eyes as to how rotten I really was feeling before. I guess when you are constantly sick and in pain, you get used to a certain level of misery and when you actually feel near normal and get sick it knocks you down. I sure hope you feel better soon and get a handle on this. I recommend almond milk. The chocolate flavor is awesome and the vanilla is good in coffee with a dash of sugar or sweetener. I am thinking of trying to make an ice cream out of it. I use the plain rice milk for cooking and baking and clarified butter and smart balance for flavor. I also use the butter flavored crisco for frying sometimes. The cheese thing is what has me bummed out so bad. I bought rice cheese and was so excited until my husband read the label and announced it has milk in it. I forgot to take my magnifying glass with me to the store, but why make a rice cheese and put milk products in it???!! :blink: Weird. Take care, :)

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Rachel,

I am right their with you. If I cnat have milk inmy ceral, and ice cream a few time s aday dunno what I am gonna do! Your a couple days head of me cuase its only be a few days since the last time I treid milk one more time to see heh. :(

Pati sending me some DariFree stuff, and if its any good I plan to make icecream with it. Thats my only chance!


- Vincent -

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Is there any way to have stuff like cheesecake or any kind of whipped topping for deserts thats casein free?

You might want to try some of the raw vegan cheesecakes. They are waaayyy more exciting than they sound, and gluten, dairy, soy and egg-free! I've had some that are seriously amazing.


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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Thanks for all the suggestions and moral support!

I wonder why so many of us are casein intolerant? I never imagined it could be this bad....I really felt like something was seriously wrong with me. Hopefully I will continue to improve and theres nothing else going on. I wasnt even posting very much since I found out about the casein...I think I was stunned into silence for a few days. :o

Mango,

That cheesecake sounds awesome! Where do you get it?


Rachel

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I have been allergic to Casein for over 20 years. I have not had a glass of milk in all that time. But, about once a month I have cheese in something I cook and the Easter candy (the milk kind) are really doing me in right now. I do not get stomach problems with the casein, but wheezing and an itchy rash. I also had a scoop of ice cream for my birthday. What with the candy and the ice cream, I am a mess of itching. But, I will start (right after the Easter candy is gone LOL), being good and avoiding dairy again. I forgot what it was like to have milk on my cereal as I use vanilla flavored rice milk. I personally save my once a month cheating for the cheese. But, to begin with going dairy free, I have to agree with everyone else that you have to go several months before you cheat. Good luck and I am so sorry that you have this allergy.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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You might want to try some of the raw vegan cheesecakes. They are waaayyy more exciting than they sound, and gluten, dairy, soy and egg-free! I've had some that are seriously amazing.

What are they made of? I haven't had cheesecake for 10 years!

Rachel - I used to love dairy and had to quit cold turkey 10 years ago. I avoided every trace of it like the plague for about 8 years. Now I occasionally bake with butter (I can't have any margarines) and eat some once in a while on toast. I also occasionally eat raw goat cheese and sheep milk romana with no problems. I wouldn't try any of these things every day and I would NEVER try to eat anything like regular ice cream or cow cheese or drink milk. I have found that I now enjoy Sharon's coconut sorbet (and other flavors), Rice Dream, Tea Dreams and homemade smoothies. Almond Breeze makes great hot cocoa. You can get used to it and still enjoy desserts.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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. I was super strict for the past three weeks and did feel better, but last week I ate some mozzarella in an omelette and I was sick with the big D sooooo bad for two days. It was as bad as being glutened!! I couldn't believe it. That really opened my eyes as to how rotten I really was feeling before. I guess when you are constantly sick and in pain, you get used to a certain level of misery and when you actually feel near normal and get sick it knocks you down.

You're right...its so easy to forget how bad things were once we start feeling a little better.

I had the opposite experience when I indulged in eating the whole block of cheese. I had "C" really bad. Its been 3 weeks since I ate the cheese and I'm still having problems with C. I also had cottage cheese a few times as well. Is it normal to have problems for this long? I would have thought the C would have resolved itself by now. :(

OK...after reading all the responses I'm pretty much convinced cheating is not going to be an option for a long long time. Certainly not for my birthday next month. :(

I'm sure with time I'll get used to it. I'm ok with not having milk (its been a long time since I've had any) but it just doesnt seem like there would be alot of options for deserts. I love desert.


Rachel

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I'm sure with time I'll get used to it. I'm ok with not having milk (its been a long time since I've had any) but it just doesnt seem like there would be alot of options for deserts. I love desert.

Dessert is my downfall. You can make great desserts with sorbet or rice dream. Gluten Free Pantry makes a good cake mix that's easy. Or you can make a berry pie or cobbler, or... PM me if you want some dessert recipes!


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Dessert is my downfall. You can make great desserts with sorbet or rice dream. Gluten Free Pantry makes a good cake mix that's easy. Or you can make a berry pie or cobbler, or... PM me if you want some dessert recipes!

Thanx. :)

Right now I'm still having alot of sensitivities and a very sensitive tummy so I'm sticking to a bland diet till it gets better. I'll definately be looking for some desert recipes (hopefully soon). I'm getting some good ideas right now so at least I have something to look forward to. :D


Rachel

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OK...after reading all the responses I'm pretty much convinced cheating is not going to be an option for a long long time. Certainly not for my birthday next month. :(

Mines today.. and first one with out ice cream cake... :(


- Vincent -

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Mines today.. and first one with out ice cream cake... :(

Awww...Bummer.

Happy Birthday though!!! Hope you enjoy the day...even if you cant have the ice-cream. :)


Rachel

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Hey Vincent, <_<

HAPPY BIRTHDAY!

Just noticed your post and your birthday at the same time and thought I'd throw you a little party.

Wooohooo! :D

*gluten-free BDAY CAKE*

*gluten-free dancing girls*

*gluten-free Party hats*

*gluten-free STRIPPER POLE!*

*gluten-free vodka shooters*

(Hey its an adult bday party!) :ph34r:

No dancing on the tables until we're safely past noon! (C'mon, lets keep it clean!)

PARTY ON!


* Diagnosed with Pernicious Anemia in 1992, "celebrating" 14 years of monthly B12 injections

* Self-diagnosed with celiac disease in 2006

* Waiting list for apointment with a GI specialist for official testing

Carpe Diem

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I got so depressed when I found out I was casein intolerant. I had been on a df diet for some time, as I knew milk was causing me a problem (food diary told me so!). I was truly hoping I was lactose intolerant due to intestinal damage, and was holding out hope that I could have things like blue cheese, chedder cheese, ANY cheese!! Ice creams, cream cheese...OK I'll stop I'm starting to miss it all again.

Finding out I was casein intolerant and that this would be life long was a huge bummer!! I still get sad sometimes about milk....I never get sad about not having gluten, just milk.

My casein intolerance reaction is pretty severe, so I know when I'm hit!! An interesting thing happened, I was eating breakfast at Bob Evans (Back about 7 months ago when I actually ate at restuarants), and I had hash browns, eggs, and sausage. Everything was fine, All went through OK, and I had no reaction to the food. A few weeks later I was ordering out from another Bob Evans, same order, and they told me that after they do add an oil containg butter (milk!) to the hash browns at some point during cooking. The server had the kitchen cook me up fresh hash browns without the added butter/oil.

Now it gets interesting as now that I knew this butter/oil was added, I contacted the other Bob Evans that I had eaten at, and they confirmed that they too added this butter/oil stuff to the hashbrowns.

So, the interesting part?!? I had the hash browns with butter on them the 1st time, with no reaction. There must be some sort of amount of casein that I can tolerate before actually triggering the response!!

Now, I'm not one to tempt fate, and my reaction to casein (as I mentioned) is severe. So, I've cut out all dairy containing items.

So, after all that reading, the moral is that (for me anyway) there seems to be an amount of casein that I can tolerate without symptoms, perhaps it is that way for you too....


Michael J. MacCartney

gluten-free 2005-June-24 Dairy free 2005-July-26

gluten / casein intolerant

HLA-DQ 2,3 (Subtype 2,7)

Diagnosed Celiac 2006-April-24

Father of:

Michael II HLA-DQ 2,1 (Subtype 2,6) - Allergic to Peanuts, tree nuts, eggs, and milk

William HLA-DQ 2,1 (Subtype 2,5) - Allergy free

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I miss yogurt! I love greek yogurt with a few sunflower seeds and a little liquid splenda in it...I don't like much anymore for breakfast and this was my breakfast staple. I've been tempted to give it a try, especially a home made version, but I've been afraid, lol. My symptoms have improved a bit since going gluten/casein free, but are no where near being "normal".

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Thanks!

Myabe the dairy free will show today... if it does I'll try making whipcream with it, though I'll be surprised if it works LOL

If it's REALLY REALLY cold and you add some plain gelatin to it, you *might* be able to create something approaching whipped cream! Are you opposed to tofu? Some silken tofu might help thicken it up enough to "peak" a little. And for heaven's sake, add some powdered sugar and vanilla!

HAPPY BIRTHDAY!!!


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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I think it does get a lot easier the longer you leave it alone. However, lately I've been toying with the idea of trying to reintroduce goat/sheep cheeses once my gut settles down further. My rheumy has me on sulfasalazine which is supposed to help stop leaky gut syndrome and things like crohn's and colitis, which I suspect I might have. So I am hoping that at some point I can tolerate things better. Right now, it seems like almost everything sends my gut into storms of misbehavior. But at least they're not lasting as long!

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