Casein And Lactose

[no-more-muffins]

I have heard that many celiacs are intolerant to milk (among other things). I think for me giving up cheese would be harder than the grains. I can substitute other things for wheat. But I don't think I can give up pizza (gluten-free of course) or cheese, ice cream etc.

I am wondering how many of you are also intolerant to milk, and if you know if you are lactose (sugar) intolerant or casein (protein) intolerant.

I am getting tested for casein intolerance with my gluten tests at enterolab. I want to feel better but I am not quite ready to give up my dairy products. (I haven't been drinking milk and have been going very easy on the cheese). I have been gluten-free for 2 weeks and I am noticing a difference for sure.

So please respond even if you are NOT casein intolerant. I am trying to get an idea what the odds are. Does anyone have a percentage from an article or something? How about soy?

[mushroom]

Have no idea what the percentages are, lactose vs. casein. I am only lactose intolerant, i.e., milk, cream, ice cream; the rest of the dairy stuff I can handle except frozen yogurt which does not appear to be real yogurt at all according to my digestive tract. I was lactose intolerant for 10 years or more before I recognized the gluten problem. I am also soy intolerant.

[seashele2]

My doctor told me that many, if not most, celiacs have problems with dairy because of the leaky gut syndrome that untreated celiac often precipitates. Milk didn't seem to bother me then, however about 6 months ago I really started noticing a problem with it. I have had no medical/allergy testing to confirm. I am just going by symptoms.

I can tolerate no regular dairy products, a small amount of lactose free cow dairy products, but much more goat milk and sheep's milk. I don't drink goat or sheep's milk, but consume them as far as cheeses go. At first I thought maybe it was just lactose intolerance since I could deal with the first lactose free items I bought. Now, if I drink more than a full glass of lactose free milk, it does the same thing to me as a small glass of regular milk. My stomach and intestines revolt.

Michelle

Western Washington State

Celiac undiagnosed for over 30 years

Celiac diagnosed, 5 years

Dairy-free

Soy-free

Beef-free

[georgie]

I am casein intolerant At first I thought it was just lactose but as I had continuing symptoms of fatigue and bloating - I was told to give up casein for a while. I felt so much better. All that fatigue and bloating seemed to go away. I can tolerate butter and small amounts of goats and sheep cheeses but do not drink milk of any type at all. Its even harder to manage than gluten-free as they seem to put milk powder in everything. Today I had a small amount of dairy without thinking and got very sleepy driving home and that made me remember what dairy does to me...

[Korwyn]

I have heard that many celiacs are intolerant to milk (among other things). I think for me giving up cheese would be harder than the grains. I can substitute other things for wheat. But I don't think I can give up pizza (gluten-free of course) or cheese, ice cream etc.

I am wondering how many of you are also intolerant to milk, and if you know if you are lactose (sugar) intolerant or casein (protein) intolerant.

I am getting tested for casein intolerance with my gluten tests at enterolab. I want to feel better but I am not quite ready to give up my dairy products. (I haven't been drinking milk and have been going very easy on the cheese). I have been gluten-free for 2 weeks and I am noticing a difference for sure.

So please respond even if you are NOT casein intolerant. I am trying to get an idea what the odds are. Does anyone have a percentage from an article or something? How about soy?

According to the research I've seen, 50% of all celiac disease are also dairy intolerant though the ratio of lactose::casein isn't clear. That said, a percentage of them appear - after some period of time ranging from months to years - to be able to tolerate some limited amount of dairy. I personally am also casein, soy, sucrose, and maltose intolerant, and there is at lease one other grain and/or vegetable I'm trying to track down. Ironically I did not test positive for lactose intolerance. Go figure.

The dairy has also been harder for me, as I could eat a pound of cheese in a single sitting. Literally. I loved cheese. And milk. Unfortunately, what happened is that as I remove the gluten from my diet, my negative response to dairy had been masked, and it actually got so much worse that I had no choice but to remove it from my diet as well. It is still frustrating and it's been hard to stay away from. However, like Pavlov and his dogs, I have been forcibly trained to NOT eat dairy. The result now is quite unpleasant.

[darlindeb25]

After 9 years of gluten free, I am now lactose intolerant. It reared it's ugly head very slowly. First it was ice cream, with coughing and congestion after eating it, I gave it up. Then came cottage cheese and yogurt problems, I gave them up. Next was my cheese, and I love cheese, yet could not deal with the constipation it was causing, I gave it up. I had not had cheese for well over 1 month when I went on vacation in Michigan. I was at my son's wedding reception, and saw cheese curd, which I had never had. My mom told me it's the best cheese I will ever eat, and without thinking, I ate some. Then I ate a little more, and it hit me, I CAN'T HAVE CHEESE. So, I stopped eating any and didn't give it another thought. A day or so later, the constipation hit...so, that was my test. Now I am sure. I have been using lactose free milk, and still seem quite gassy, so I guess maybe I will have to give it up. I only use it in my coffee.

Of course, I am getting older, so my problem with dairy may just be age related. I haven't found any coconut milk, and I can't do soy, or grains, so I feel rice milk is out too.

[Lisa16]

I also saw the 50% number on a website and the man was citing medical textbooks as his source.

I am cf and gluten-free, but the casein took me a little longer to figure out. Recently I was at a gluten-free baking class and the instructor had been gluten-free 18 years. She said it took her about 10 years before she could eat a little dairy and that she still couldn't eat lettuce. I tell myself there may be hope 10 years out for me.

The dairy can also give me symptoms like gluten, except that they do not last anywhere as long.

I agree with you-- I personally feel it is much harder to go cf than gluten-free. It makes you feel truly deprived (esp. if you are from the midwst where the culture is so milk-based). And sometimes I cheat a little bit with the dairy and have a piece of chocolate. I always pay, though and I am kind of at the point where it's not worth it anymore.

If you turn up positive, try coconut milk instead for baking. For cereal and stuff like that, I use the almond milk instead of soy milk (soy is becoming suspect fr e too!) and there is some gluten-free cf ice cream by rice dream and turtle mountain that is really pretty good. You can make smoothies and sorbets and even get some decent soy-based cream cheese and sour cream (if you can have soy, that is.) I have found most soy-cheese and rice-based cheese (the kind made to look like american cheese slices etc.) to be an abomination. Lord, who invented that stuff?

At any rate, good luck with your testing.

[Michi8]

I have heard that many celiacs are intolerant to milk (among other things). I think for me giving up cheese would be harder than the grains. I can substitute other things for wheat. But I don't think I can give up pizza (gluten-free of course) or cheese, ice cream etc.

I am wondering how many of you are also intolerant to milk, and if you know if you are lactose (sugar) intolerant or casein (protein) intolerant.

I am getting tested for casein intolerance with my gluten tests at enterolab. I want to feel better but I am not quite ready to give up my dairy products. (I haven't been drinking milk and have been going very easy on the cheese). I have been gluten-free for 2 weeks and I am noticing a difference for sure.

So please respond even if you are NOT casein intolerant. I am trying to get an idea what the odds are. Does anyone have a percentage from an article or something? How about soy?

I'm lactose intolerant. Going gluten free improved my intolerance, but I have fallen off the wagon, and my lactose intolerance has become worse again.

My whole family went dairy free for a good while, mainly to narrow down health issues with my ds. Through that challenge we found out that he is lactose intolerant, but not allergic/intolerant to casein. When it comes to reacting to lactose, I have a much easier time with higher fat dairy (cream is easier to digest than skim milk) because lactose levels are higher in lower fat milk. Yogurt and hard cheeses are no problem at all, as the lactose is typically very low/non-existant.

When we were dairy free (which was just as difficult as being gluten free...you have to read every label), we tried all sorts of milk replacements. I do not do well with soy myself (I have problems with allergy to some legumes), and we weren't fond of rice milk. Almond milk was great in coffees and in baking. The hands-down winner for drinking and using in cereal was "Dairy Free", which is a gluten free vegetable-based product.

Michelle

[lcarter]

We discovered the Dairy Intolerance long before realizing the Celiac. I had problems as an infant shortly after coming home from the hospital. Evidently, it never went away and came back with a vengeance in my twenties; it appears to be both dairy factions, sugar and protein. I also have a sugar problem in general. Candies or other sweets cause tingling and make my mouth and throat sore, plus cause intestinal spasms sometimes. Coca Cola, and some other sodas make the muscles in my throat spasm too [i do not mean "burp"!], just with the first sip or two. It is really weird! I have never met anyone else that has that reaction to colas.

I have read that Lactose and Fructose Malabsorption are both common with Celiac. Interestingly, Fructose Malabsorption folks also are sensitive to wheat (but not rye or barley). FM causes similiar gastrointestinal symptoms to Celiac. A gluten-free diet is recommended for FM folks. Doctors do not know much about it, so it is very hard to get them to even look at it as a possibility. If you look up FM on the internet, be careful that you do not read the Hereditary Fructose Intolerance, as the names are so similar. This is a totally different "puppy-dog". Also, it is interesting to know that other food intolerances can cause intestinal blunting similar to what is seen by endoscopy in Celiac.

[ENF]

I stopped having dairy products a couple of years ago, due to casein and lactose issues. At the time, most "dairy" that I was ingesting was cow's milk products. I had tried goat's milk once or twice, but I was not yet healed enough to notice any difference.

Earlier this week, I decided that it was time to try goat's milk again, so I got some goat's milk, cheese, and kefir. I've used the milk for coffee, and small amounts of cheese and kefir. I thought that it would be difficult to get used to, at the very least, but I was pleasantly surprised when there were no bad reactions at all - in fact, my digestive system seems to have improved since I started.

Many people who can't tolerate cow's milk are fine with goat's. Goat's milk is different than cow's milk - it's pasteurized, but not homogenized, because the fat globules are much smaller than cow's milk. All you have to do is shake it before serving. I’ve read numerous reports by nutritionists claiming that it’s healthier than cow’s milk, as well.

Just as it was a mistake for humans to start ingesting gluten grains, the switching from goat's to cow's milk was also bad.

The word "dairy" should not be synonymous only with "cow"....our ancestors, and many people today, are very well nourished from the healthy dairy products from the goat - man's first domesticated animal

[tarnalberry]

I'm casein intolerant (at least). Yup, dairy was harder to get rid of than gluten, for me. I *LOVE* cheese and yogurt and kefir. I used to make yogurt cheese! But, if you know that dairy makes you feel unwell, the next time you eat a spoonful of yogurt, a piece of cheese (even if on a pizza), ask yourself right then and there, "why am I making myself feel sick? are there no other foods out there that can please my tastebuds that I have to sicken myself in order to be happy eating?" that's really about it. Sure, sometimes you want to say yes, but instant gratification is not what it's cracked up to be.

[Amyleigh0007]

I am very lactose intoleranct. Lactaid is my best friend.

[darlindeb25]

I read somewhere, that most cheese is lactose free, so if you react to cheese, more than likely, you are casein intolerance. If the cheese has 0 grams of sugar, there is little chance of lactose.

Open Original Shared Link

So, I went dairy free. The only thing left to give up was the milk in my coffee. I started drinking coconut milk on Friday July 10th, the very next night, I slept all night long, and now 13 days later, I am still sleeping all night. I have had insomnia for more years than I can remember.

Amazing huh?