Great, So I Have Casein Intolerance Too

[CGally81]

I'm going through the horrible (and most people don't suffer it) "hungry all the time" phase of going gluten-free. But I discovered that I tended to have headaches and start to zone out a bit after eating food that had milk ingredients. Including GLUTEN-FREE varieties of Chex (not all varieties contain milk ingredients). I can't even trust food labeled as gluten-free, since gluten is apparently not my only problem.

I am removing casein from my diet. When I went gluten-free, I became hungry all the time, and it was horrible. I also started suffering from gluten withdrawal symptoms, which were really powerful. I later discovered that a certain food I was eating contained gluten (labeled as "malt powder", which I didn't recognize as a gluten ingredient), and removed that also, and the hunger spiked back up.

I later decided to go dairy-lite, but not free, and experienced casein withdrawal, which wasn't as bad as gluten withdrawal (same symptoms, but not as powerful), and a rise in hunger, which eventually started to go down faster than, say, the rise in hunger when I removed gluten.

So now I'm removing casein from my diet. Entirely. It definitely appears to be causing a problem. I expect my hunger to spike up in a few days, and I'm already having some of the withdrawal symptoms, like annoying itchiness while lying in bed last night (though it's been worse when I had it as a gluten withdrawal symptom!). I am not looking forward to the next few weeks.

I hate the fact that I randomly went from a healthy 27 year old who felt energetic much of the time to a complete wreck in less than a year, having to be paranoid about what I eat and what I eat it in. But I have no choice, but to tough it out until whenever a cure for gluten AND CASEIN sensitivity (I am not diagnosed Celiac and don't have the 2 currently known genes) is invented. The next 10 years? Science sure is SLOW.

[nmlove]

Sorry to hear how frustrated you are! It does seem like everything changes overnight. I had to take out casein/soy initially because of my breastfed daughter but on challenging her, found out dairy bothered me too. After the initial withdrawals I actually started feeling the need to eat less, plus many of my wacky, out of control eating cravings were gone. And it's still that way. When I on occasion have something with dairy in it, those cravings and no control eating comes right back. Don't get me wrong, I still have cravings. Like, hmm, a pizza sounds good to eat (dairy free of course) but that's normal. But I don't get, I have to have this, this and this and just keep eating. And still not feel satisfied. Anyway, I hope you don't get so bad with the hunger. I get that way when I eat less gluten too I'm finding out. (My boys are the ones who need to be gluten-free but I've cut waaay back on what I used to eat.)

[CGally81]

Sorry to hear how frustrated you are! It does seem like everything changes overnight. I had to take out casein/soy initially because of my breastfed daughter but on challenging her, found out dairy bothered me too. After the initial withdrawals I actually started feeling the need to eat less, plus many of my wacky, out of control eating cravings were gone. And it's still that way. When I on occasion have something with dairy in it, those cravings and no control eating comes right back. Don't get me wrong, I still have cravings. Like, hmm, a pizza sounds good to eat (dairy free of course) but that's normal. But I don't get, I have to have this, this and this and just keep eating. And still not feel satisfied. Anyway, I hope you don't get so bad with the hunger. I get that way when I eat less gluten too I'm finding out. (My boys are the ones who need to be gluten-free but I've cut waaay back on what I used to eat.)

Wait, you are casein-intolerant? You might want to be checked. If you get hungry when you remove gluten, then maybe your body is addicted to it (especially if you're replacing gluten with other foods containing the same nutrients and your body still wants it).

Anyone here who went through the "hungry all the time" phase able to let me know what to expect? Although my hunger spiked up when I went dairy-lite last year (removed all milk, and had the occasional yogurt, 1 day or less), so I think I know what's going to happen in the next few days, and last the next few weeks. I fully expect my hunger to shoot up AGAIN, and take forever to get down to normal levels. Just like when I removed Fudgsicles from my diet after realizing they contained gluten. I really hate this experience. At least casein isn't as powerful as gluten, so it might not last quite as long. (Casein withdrawal symptoms, which I had, weren't nearly as bad as the gluten withdrawal symptoms, which were the same symptoms but very powerful and lasting for a long time)

I really wish that when celiac is discussed, casein is mentioned as well. As it is, it's always gluten, gluten, gluten, as if that's our only problem. Many gluten-free foods often contain casein.

[nmlove]

Wait, you are casein-intolerant? You might want to be checked. If you get hungry when you remove gluten, then maybe your body is addicted to it (especially if you're replacing gluten with other foods containing the same nutrients and your body still wants it).

Many gluten-free foods contain soy too.

After my oldest was positive, we all got tested (his younger brother, husband and me). His brother was the only one who came back positive. Of course I know about false negatives. I've had some food issues since being pregnant with my third (born this past June). My doctor did offer doing an endoscopy but I declined it. But yes, I've noticed a difference cutting back on gluten-type foods. I haven't made the leap to 100% gluten-free though. My mind isn't wrapped around that yet.

Hope the next few weeks aren't too rough on you!

[Welda Johnson]

I'm sorry that you're experiencing so much discomfort. It seems to go along with learning you have food intolerances. If you've learned at age 27, I think you are blessed, because I am 65 and had it since age 8, but doctors didn't even think of Celiac years ago. Eliminating certain foods & seeing how you feel really works to give you some new insights about foods to which you may be intolerant. Casein is often coupled with whey, and I just read yesterday that when the villi are flattened, they may cause an intolerance to milk. I've learned to eat only meats, fruits, vegetables, legumes, nuts and seeds, which is a pretty limited diet but is tolerable. Reading ingredient labels is a must. Even then you come up against hidden ingredients sometimes, such as you did. I've learned the hard way that I am intolerant of all grains, all milk & dairy, egg whites, yeast, casein, whey, msg, maltodextrin derived from grains other than corn, and modified food starch from grains other than corn. It may take awhile, but if you're diligent you'll learn that your body loves you and will share with you the foods to stay away from. It's incredible, isn't it, that we have all gone through many of the same symptoms and frustrations, thus making US the experts, rather than the trained medical professionals? I wish you well, and would be happy to offer any input you may find helpful. Just email me at welda@att.net Oh yes, I have had an insatiable appetite for years, and I always thought it was just me, so thank you for waking me up to the thought that it may be due to my food intolerances! Good luck.

[Fiddle-Faddle]

CGally, I did go through the constant hunger when I was first gluten-free. I also removed casein from my diet because, back then, everyone on the board recommended it, citing studies that showed that gluten-damaged intestines did not heal when exposed to casein.

I reintroduced casein a few months later, with no problems.

I ate LOTS of steamed veggies, fresh fruit, salads, rice, potatoes, grilled meats, fish, chicken--and Fritos (not so healthy) and dark chocolate chips (not sure about the healthy part there ). I snacked between every meal, and drank lots of water.

I also stepped up the exercise and fresh air, which, oddly enough, seems to HELP control my hunger rather than add to it.

Oh--I've said this many times--YOU DON'T NEED TO HAVE THE TWO SUPPOSEDLY "CELIAC GENES TO HAVE CELIAC DISEASE." You may very well have celiac disease. Or not. I am not diagnosing you, just reminding you that you can't rule it out based on genetics. There are people with biopsy-diagnosed celiac who DON'T have DQ2 or DQ8.

As for hoping for a cure, I have a different perspective. I AM cured--as long as I don't eat gluten. If eating rat poison makes me sick, but I am healthy if I don't eat it, then I don't have "rat poison allergy that makes me sick," do I? If staying off gluten keeps me perfectly healthy, then as far as I am concerned, gluten=rat poison. (Nothing against rats, here!) I am not looking for anyone to come up with a "cure" for the intolerance to a poison.

Suppose someone invents a miracle pill that keeps you from developing villi destruction when you eat gluten. Will they be able to guarantee you that it won't cause some OTHER kind of autoimmune destruction? We already know that for many people, the intestinal damage from gluten is less severe than other areas of damage, such as skin for those with DH, and neurological damage to others.

It's such a simple thing to avoid gluten. And food manufacturers and restaurant owners are becoming more and more aware of this, and realize that an enormous number of people are affected.

So, please, be patient! You will get through this, and become an expert, and will be advising others in the same boat before you know it!

[nmlove]

Oh yes, I have had an insatiable appetite for years, and I always thought it was just me, so thank you for waking me up to the thought that it may be due to my food intolerances! Good luck.

It's funny in a way, isn't it? It seems like you either shy away from foods that your body doesn't like or you crave them. I saw that in both my boys with gluten. One started eating more gluteny foods, less "good" stuff. And the other slowly started eating less, of everything.

[CGally81]

CGally, I did go through the constant hunger when I was first gluten-free. I also removed casein from my diet because, back then, everyone on the board recommended it, citing studies that showed that gluten-damaged intestines did not heal when exposed to casein.

I reintroduced casein a few months later, with no problems.

I may be casein intolerant as well, though. Eating casein started to give me the neurological symptoms of eating gluten, though on a lesser scale, plus headaches. I don't know if I'll be able to reintroduce it months later. I'll give casein a wide berth.

Plus, it's been one full week since I removed casein, and my hunger spiked up. Very noticably. Not as high as when I first removed gluten (I had to eat nearly half a full meal's worth of food every hour, and was easily eating over 5000 calories a day, but going to bed hungry, and waking up with headaches), or when I removed the final traces of gluten (Fudgsicles), which also saw a hunger spike.

Likewise, when I decided to go dairy-lite, there was a very big hunger spike in less than a week, which was really bad. (It did, however, seem to go down more quickly than the hunger spike caused by removing gluten. I guess it's true that casein is less potent than gluten. My withdrawal symptoms were also less severe). I'm not surprised that, removing the final traces of casein (popcorn which has a milk ingredient, and gluten-free Chex with milk ingredients), it's spiking again. It was getting more manageable recently. Hopefully this will be the LAST hunger spike caused by this stupid autoimmune nonsense.

When you removed gluten, you removed casein also, so I guess I can't ask you if your hunger spiked a second time after you removed casein. Glad to hear someone else went through this though - both the hunger and the casein problem. I really hope you're right about reintroducing casein. Since I developed gluten intolerance out of the blue at a time when I was explicitly trying to live healthy - by eating mostly only healthy foods (whole wheat bread, granola bars), I hate the idea of having to toss out yogurt and milk as well, which are also supposed to be healthy.

I also stepped up the exercise and fresh air, which, oddly enough, seems to HELP control my hunger rather than add to it.

At first, I didn't even have the energy to exercise, though I wanted to. Now that I do, I go for walks and sometimes bike rides. I can't say that I know if it's helping the hunger, but it should help my health at least.

Oh--I've said this many times--YOU DON'T NEED TO HAVE THE TWO SUPPOSEDLY "CELIAC GENES TO HAVE CELIAC DISEASE." You may very well have celiac disease. Or not. I am not diagnosing you, just reminding you that you can't rule it out based on genetics. There are people with biopsy-diagnosed celiac who DON'T have DQ2 or DQ8.

Agreed. I have a coworker who developed lupus! When she was diagnosed with it, they found out she is intolerant to gluten, casein, soy and chicken. She suffered silently. She developed a second autoimmune condition (one of the nasty effects of celiac), as well as being intolerant to all of the big 3, and developed an additional food intolerance, before being diagnosed. And she tested negative for celiac! I think the testing is really pathetic.

As for hoping for a cure, I have a different perspective. I AM cured--as long as I don't eat gluten. If eating rat poison makes me sick, but I am healthy if I don't eat it, then I don't have "rat poison allergy that makes me sick," do I? If staying off gluten keeps me perfectly healthy, then as far as I am concerned, gluten=rat poison. (Nothing against rats, here!) I am not looking for anyone to come up with a "cure" for the intolerance to a poison.

Suppose someone invents a miracle pill that keeps you from developing villi destruction when you eat gluten. Will they be able to guarantee you that it won't cause some OTHER kind of autoimmune destruction? We already know that for many people, the intestinal damage from gluten is less severe than other areas of damage, such as skin for those with DH, and neurological damage to others.

Only partly agreed. If it targets only the intestine, then it doesn't help me, as my symptoms are overwhelmingly neurological... and blood sugar related (I tested negative for diabetes). However, if a cure is invented which releases "friendly" gluten into the body and tricks the immune system into no longer attacking the real thing, then that would be ideal. I'd definitely go for that.

[CGally81]

I'm sorry that you're experiencing so much discomfort. It seems to go along with learning you have food intolerances. If you've learned at age 27, I think you are blessed, because I am 65 and had it since age 8, but doctors didn't even think of Celiac years ago.

There are times when I do think that I'm comparatively lucky. For one, I was able to look on the internet and try to find out why I kept zoning out and being unable to concentrate, and "a gluten-free, wheat-free diet" was said to work wonders for people who had that problem, according to one website. I tried it, not knowing what gluten was, but knowing what wheat was, and my symptoms were significantly reduced (until I ate other things containing gluten). Then, of course, the hunger problem where I had to eat 5000+ calories a day just to not pass out, suddenly showed up. But the neruo symptoms weren't showing up all the time.

I've learned to eat only meats, fruits, vegetables, legumes, nuts and seeds, which is a pretty limited diet but is tolerable.

That's basically the "neanderthal" diet right there. I bet our prehistoric ancestors probably contracted all sorts of diseases that couldn't have been cured at the time, but at least they didn't have to worry about celiac! They didn't yet know that wheat could be eaten.

Oh yes, I have had an insatiable appetite for years, and I always thought it was just me, so thank you for waking me up to the thought that it may be due to my food intolerances! Good luck.

It doesn't affect everyone the same way. A supervisor at my office has celiac, but told me he didn't get hungry all the time after he went gluten-free (and he ONLY had to go gluten-free; casein and soy don't, and never did, both him). He'd lost 40 pounds due to celiac, yet didn't become insatiably hungry. Talk about lucky.

For me, a blood sugar drop (well, intense hunger and headache and severe food cravings) is one of my gluten symptoms. To a lesser extent, my casein cravings. But I stop eating, and while I no longer get the "zone out and can't think and feel like a zombie" neuro symptom or the comparatively mild gasto stuff (it was limited mostly to weird stomach noises that went on for hours and hours on end), I instead get hungry all the time.

I don't understand the relationship between celiac and hunger - whether it's hunger from eating gluten, or hunger from removing it, but it happens to some people and not others.

[Fiddle-Faddle]

I think it's quite possible that your intestines didn't heal completely from going gluten-free, and that they might now, with the removal of casein, do so.

As far as yogurt goes, there are yogurts made from other "milks." Soy yogurt tastes okay, but I think coconut milk yogurt is really good. You could also get a yogurt maker (google yogurt machine?) and make your own with whatever dairy-free milks taste best to you. That way, you'd get the health benefits of the probiotic and the yumminess of yogurt!

You could and probably should take probiotic pills of some kind, but I bet they don't taste as good as home-made yogurt.

Are you doing okay weight-wise? I was amazed that I was starving all the time, EATING non-stop--and I lost 20 pounds without even trying. I'm sure the exercise helped, but I really doubt the Fritos and chocolate did!

[T.H.]

First - oh man, I can relate to the hunger!!

I was so hungry after going gluten free, it was, as you say, horrible. I remember being happy during the times when the hunger would just be a gnawing ache rather than a full blown pain. I was losing about a pound a day, at that point. Awful.

But my doctor did tell me why that happened, or at least one of the reasons. According to him, how damaged you are, and how vitamin deficient, plays a big role. The more damage there is in the intestines, the fewer vitamins, minerals, and calories you are digesting.

When you go off gluten, you often go off a lot of the big calorie foods, too, so that contributes to the hunger. And your body can make you feel hungry because it needs vitamins or minerals, as opposed to calories, so that can make you feel starved all the time if you have deficiencies.

It sounds like the reason this didn't happen while on gluten was because the body was, literally, too messed up to send out the right signals (my interpretation of what he said, LOL.)

However, I wanted to just mention the casein thing, because I experienced something similar. I was feeling pretty bad after going gluten free, and in the end, I had to drop SO many foods. I never reacted to these foods in ways I noticed before, but every time I would drop a food, I would feel better and the reactions to OTHER foods would be even more noticeable. Almost like I must have been just feeling bad, all the time, before then.

Now I have times when I feel good, so when it gets bad, I notice.

And I have a lot of similar symptoms - the spacy head, the dizziness, ugh. However, the reactions started changing on me after a while. For a few of the ones that were bad, that I didn't catch at first, I started to have gut symptoms for the first time ever, on top of the spacy head stuff. I also started to get hives, but in my throat and mouth. I'd never had them before from foods like this.

I mention this because you were mentioning the itchiness, yes? And I'll be honest, from my own experience, my first thought was: I wonder if it's like me, and that's actually a reaction to another food popping up? Might be, might not be, but I hope that the hunger this time is lower, and no new itchiness or food issues for you!

Good luck!

Oh, and one thing: another issue that seems to pop up if you are developing other food issues is reactions to other grasses for a while, because of their close relationship to wheat. Corn, rice, millet, teff, sugar cane - all in the grass family with wheat. And sugar cane is less processed in a lot of gluten-free foods, so it's more likely to make you react if you start having issues with it.

Hopefully, you won't!

[Darissa]

About casien free diet...When my daughter was dx with celiac disease, there was so much damage to her villi in her colon...and the markers that digest lactose are on the bottom of the villi...(wish I could draw you a picture:) so becuase of the damage from the gluten to the villi, she could not digest lactose, the markers on the villi where gone. Her doctor had her go 100% lactose free for 3=4 months while her colon had a chance to heal while eating gluten free. It took longer, about 6 months, but the colon has healed and she can now eat lactose / casien. Her doctor said it was very common for people who have celiac disease to have difficult time with lactose until their colon is healed. Just a thought! Hope you feel better soon!

[Darissa]

Sorry...i just saw on your post that you don't have celiac disease. So, the info I posted may not apply to you. Sorry about that!

[CGally81]

Sorry...i just saw on your post that you don't have celiac disease. So, the info I posted may not apply to you. Sorry about that!

I think that if it looks like a duck, walks like a duck, and quacks like a duck, but tests negative for being a duck, then there's something wrong with the testing, and it's still a duck.

Basically, I know that I suffer severe brain fog and blood sugar drops if I eat gluten, and now casein is causing the symptoms to a lesser degree. Plus, I developed fructose malabsorption before I started feeling symptoms when I ate gluten, so I was having "silent symptoms" before I got more obvious symptoms. So if I don't have officially celiac, then I have something that's basically... celiac. And my endocrinologist (who was a great and very understanding guy) agrees.

Anyway, if it is indeed the case that celiacs can eventually start tolerating casein again, then I think I'll give it a try again later in the year. I really would like to regain the ability to eat some of what I lost!

On the other hand, lactose =/= casein. Both are milk-related, and the foods I had which affected me simply said "milk" as an ingredient, but the symptoms were similar to the ones from gluten, not to mention that I am suffering (mild) casein withdrawal, which is basically gluten withdrawal lite. I've heard several times that casein can later be tolerated if you go off both it and gluten for a while, but I don't know how much hope I can hold out for that. Still, I hope that's the case.

[Korwyn]

I'm going through the horrible (and most people don't suffer it) "hungry all the time" phase of going gluten-free. But I discovered that I tended to have headaches and start to zone out a bit after eating food that had milk ingredients. Including GLUTEN-FREE varieties of Chex (not all varieties contain milk ingredients). I can't even trust food labeled as gluten-free, since gluten is apparently not my only problem.

Hi CGally,

I believe (based off both personal experience and lots of research) that the hunger may be linked more to the carb/starch removal from your diet. My suggestion and what has worked for me would be for you to eliminate the starches completely for a while. No grains or potatoes, and increase the amount of animal fat (non-processed) for a while. Bake a chicken (or parts) and make sure you eat at least some of the skin. Add lots of (extra-virgin cold-pressed) coconut oil to your diet. Get or increase fish or at least fish-oil with omega-3. The body is designed to metabolize fat and it sounds like you are going through a carb withdrawal more than a gluten/casein withdrawal. Milk has lots of sugar in it and the more skim the greater the percentage of sugar per serving. Breads and grains are starchy carbs which convert to sugar easily. If you are still taking in some of these things you are basically teasing your body because it is trying to get you to eat what it has become accustomed to. It needs to switch over into ketosis (burning fat for energy) rather that the starch/sugar->glucose cycle.

[CGally81]

Hi CGally,

I believe (based off both personal experience and lots of research) that the hunger may be linked more to the carb/starch removal from your diet. My suggestion and what has worked for me would be for you to eliminate the starches completely for a while. No grains or potatoes, and increase the amount of animal fat (non-processed) for a while. Bake a chicken (or parts) and make sure you eat at least some of the skin. Add lots of (extra-virgin cold-pressed) coconut oil to your diet. Get or increase fish or at least fish-oil with omega-3. The body is designed to metabolize fat and it sounds like you are going through a carb withdrawal more than a gluten/casein withdrawal. Milk has lots of sugar in it and the more skim the greater the percentage of sugar per serving. Breads and grains are starchy carbs which convert to sugar easily. If you are still taking in some of these things you are basically teasing your body because it is trying to get you to eat what it has become accustomed to. It needs to switch over into ketosis (burning fat for energy) rather that the starch/sugar->glucose cycle.

I am going to see a nutritionist soon, so we'll see what that person says.

My hunger spiked after the removal of gluten, then the removal of the rest of the gluten (see my signature), then the removal of casein, then the removal of the rest of the casein.

But it also had decreases followed by increases, then decreases again. Just 3 days ago, I was able to eat only 2000 calories and feel pretty decent. Yesterday, I had to eat 3600. The hunger had gone down for a few days only to spike again. I hate this random nonsense. I want to see the hunger finally go away. I might add that what I eat hadn't really changed. I have rice sometimes with dinner, and that's the only starch I have.

I am currently having one of my casein withdrawal symptoms right now as I type this. Chills in my legs. Yesterday I had the "sensitive skin" problem for a while at different points throughout the day. These are some of the same symptoms that I had with gluten withdrawal, though the gluten withdrawal was worse.

I'm not dismissing what you're saying, but I've seen my hunger get better, then worse again, and haven't really seen the relationship between that and my brown rice. I'll tell the nutritionist what you said and what I eat and see what I'm told.

Anyone else here who had the hunger problem go through "better, then worse" cycles?

[Cinderella10]

I was diagnosed in May with Celiac Disease. In December, I realized that I was having lesser gluten symptoms, even though I knew with certainty that I had consumed no gluten.

Then I started noticing that taking lactase pills wasn't making the discomfort of lactose go away. So I went casein-free. Then I finally understood what you were all talking about when you mentioned brain fog!

I would love to re-introduce casein someday, but for now, I'll just wait and see.