Lactose Intolerance

[kkkkaty]

I have figured out that dairy makes me feel pretty ill (tummy ache and D)- I feel great being off it. But I'm very sad about this! I know that since I've been gluten-free (4 months), I'm much more sensitive to several things I love (like coffee and chocolate) and when I was recently glutened from cc I was stunned at how sensitive I was and how intense the reaction was (8 days !). So I am wondering -do you get less sensitive to dairy over time? And if not, does anyone still eat it and take a pill to counteract the effects?

[*lee-lee*]

i noticed a reaction to dairy when i first went gluten free so i tried to be as "dairy-light" as possible. typically i only had some milk with my cereal and a little cream in my coffee. anything more than that and i'd be running for the bathroom. i tried to integrate ice cream in every once in a while (it was summer!) but i always regretted it the next day.

just recently, i've been eating a lot more cheese and earlier this week i had a huge bowl of ice cream after dinner 2 nights in a row. knock on wood...all was ok! no reaction whatsoever. it's been a long 5 months but it seems i can tolerate dairy again.

there are the lucky people who just need time to heal..temporary lactose intolerance, i guess.

[Lori T.]

I have figured out that dairy makes me feel pretty ill (tummy ache and D)- I feel great being off it. But I'm very sad about this! I know that since I've been gluten-free (4 months), I'm much more sensitive to several things I love (like coffee and chocolate) and when I was recently glutened from cc I was stunned at how sensitive I was and how intense the reaction was (8 days !). So I am wondering -do you get less sensitive to dairy over time? And if not, does anyone still eat it and take a pill to counteract the effects?

Have been gluten-free for 2 years now, WOW, and still have trouble with large amts. Have to go completely without, even powdered form in some gluten-free products will bother me. If I do that for long periods,usually several weeks to a month or more,I am able to go back to small amts. and I mean small. A piece of cheese here and there or a gluten-free cookie or other product with dairy in it. I have been using Land o Lakes lactose free skim milk for some time and that I can tolerate, lactose free of course. If I don't eat aged cheese, I can do the little piece I was telling you about. Something about the aging bothers me. Annatto coloring in anything will turn my insides upside down as well. Even a non-dairy item with it in it is bad for me. Alot of cheese products contain it. If you can afford it, Lactaid chewables work for me if I only take a small amt. of dairy. I am also able to drink the Lactaid/Lactose free milk before eating anything with dairy and it seems to curb any issues. Just some things to try. Good luck. Let us know how you do. Lots of "no dairies" around this site!!!

[chatycady]

Celiac disease damages the intestine. A gluten-free diet often isn't enough to to heal the small intestine. You may want to check out the Specific Carbohydrate Diet -SCD under food tolerances - leaky gut thread.

FYI!

[powerbraid]

...there is hope.

I have been gluten-free for about 18 months, and only within the past 4 months have started yogurt again. Just this week I have been making Chai with goat milk, and seem to be doing ok with that.

I do think that it might be necessary to give your intestines time to heal. I know mine are still on the journey!

I have also been following the Specific Carbohydrate Diet mildly. I do eat buckwheat and quinoa (they are botanically not true grains), although avoid other grains (eve gluten-free ones). Going grain-free and not just gluten-free has been really helpful for me.

Hang in there!

I have figured out that dairy makes me feel pretty ill (tummy ache and D)- I feel great being off it. But I'm very sad about this! I know that since I've been gluten-free (4 months), I'm much more sensitive to several things I love (like coffee and chocolate) and when I was recently glutened from cc I was stunned at how sensitive I was and how intense the reaction was (8 days !). So I am wondering -do you get less sensitive to dairy over time? And if not, does anyone still eat it and take a pill to counteract the effects?

[neesee]

I've been gluten-free for just about 21 years now, and I'm still severely lactose intolerant. I gave up hoping a long time ago.

neesee

[mushroom]

I am a year gluten free. I had been lactose intolerant for years but find I can now tolerate the amount of milk in a cappuccino. Wouldn't dream of trying ice cream yet!

[kkkkaty]

Thanks everyone for your thoughts and experiences. I guess I will just take it slow and stay off dairy ( and cry quietly in my room) . One more question for the lactose intolerant folks- do you also stay away from anything that has milk in it- like cookies or chocolate?

Thanks all.

[lbd]

I think there are two separate problems with dairy. One is lactose intolerance which has to do with little to no production of lactase - the enzyme that allows you to digest milk. In most mammals, including many humans, the production of the lactase enzyme is turned off around the time of weaning. We are not really supposed to be consuming dairy products after the age of weaning. Some humans continue to produce lactase, and if dairy is consumed at a regular rate after weaning, then some will continue to produce lactase indefinitely. Some people are never able to produce lactase after childhood however, and are therefore lactose intolerant.

The second problem with dairy is with the protein casein. It has a chemical structure much like gluten and seems to trigger a similar response as gluten to people who are gluten intolerant. This is my case. Once I stopped eating gluten containing foods, I found that the final key to stopping migraines was to cut out most dairy. I think that the body is so sensitive to responding to the toxic effects of gluten, that it reacts to casein's similar structure the same way. Antibodies are produced to recognize chemical structures of offenders, so this makes sense. I seem to be able to get away with tiny amounts of dairy, especially goat's milk varieties which have less casein, but last night, I indulged in a creme brulee at a restaurant (after checking to make sure it wasn't CC'ed with gluten) and woke this morning with a mild migraine.

So, what many of you may think is lactose intolerance, may very well be casein intolerance.

Laurie

[ang1e0251]

I've been lactose intolerant most of my life. I'm not willing to try milk again no matter what. That said I can tolerate some things with dairy; butter, aged cheese but not anything with powered milk like hot chocolate mix. I can eat milk chocolate unless it's the expensive high cream kind. Nestle's is Ok. You see we're each individuals and react uniquely. Can you have soy? The past few years I've been using Silk soy milk in coffee for puddings, etc. (You can buy the unsweetened if you want to make savory dishes like mac & cheese.)

Many posters here have been able to go back to milk after healing somewhat, some cannot. Some the Lactaid works well for (my daughter), some it doesn't help (me). You have to be a detective and find out what works for you.

Good luck, don't cry about it. Find an alternative and enjoy your favorites! Take up the challenge!

[kkkkaty]

lbd,

Thanks for the very informative reply. I will definately investigate that.

ang1e0251,

I've already stopped crying. I understand the result of all this is that I get to feel so much better- that is a huge prize!

and as the saying goes in my house, "when Mama's happy, everyone's happy"

[angieInCA]

I'm almost 2 months into the gluten-free diet. I have been lactose intollerent for as long as I can remember, probably my first Celiac sign but never knew it. I have no problem with butter, hard cheese or Lactose free milk (Lactaid) but cannot touch ice cream, yogurt, sour cream, cottage cheese, expensive milk chocolate (dark is fine) etc......

I noticed I seem to have a problem with soy so I have cut it from my diet for the past month. It was giving me the same problem as the lactose milk. The other thing I am having a problem with is larger amounts of frutose (more than 10 grapes at a time). I seem to be OK with a smaller serving. I have to avoid HFCS all together.

[Chrissyb]

The whole dairy thing is so confusing to me. Seems like I am ok with yogurt and some chocolate, but anything else, butter, milk, cheese, sour cream and so on I have to stay far away from, I really don't understand. I have been gluten free for about a year now and that was pretty straight forward compared to understanding they dairy problem. I miss my flavored creamer even the ones that say they are lactose free I can not handel. I just learned to make a yummy pizza crust and now I can't have chesse . Oh well such is life. I think the hardest is part is going out to eat, I was just getting that handel on the no gluten now I forget to check for dairy when I order. Man oh man.

[tmb]

I have figured out that dairy makes me feel pretty ill (tummy ache and D)- I feel great being off it. But I'm very sad about this! I know that since I've been gluten-free (4 months), I'm much more sensitive to several things I love (like coffee and chocolate) and when I was recently glutened from cc I was stunned at how sensitive I was and how intense the reaction was (8 days !). So I am wondering -do you get less sensitive to dairy over time? And if not, does anyone still eat it and take a pill to counteract the effects?

Hi kkaty, there are direct links between GI and lactose intolerance. The damage gluten causes to the intestine can create other food intolerances, these are often temporary. Lactose is common as if yeast/candida issues. If you have not already used a food/symptom diary, you should do so to see if it is only dairy that causes issues. My own experience of being gluten-free for the past 6 months and on a candida diet for 12 months, and lactose free for 7 years is that dairy reaction for me is within 12 hours and this is usually D. I am unsure if there are other more subtle effects from dairy. Most of what I have read tells me that I might be able to return to dairy after a year of being gluten-free.

Instead of cow dairy I use goat or sheep products, yoghurt and cheese and rice milk. The protein structure of these seems to create less issues with our digestion and immune system, and I seem to tolerate these OK. I did use soy for a while. however soy intolerance appears to be quite common, and after some possible reactions to this, I decided it would be eaier to avoid at this stage in my recovery.

My plan is to get to a point where my overall health has recovered to the point where I feel confident to test things like dairy, chocolate etc, and I would guess this will be around 12 months gluten-free. The recovery rate for gluten-free appears to be between 6 months and 5 years, from what I have read and the experiences of others. This depends upon how careful you are, how long you have been celiac, etc. We all react differently around some very common themes.

My advice is to do the hard work now, avoid anything you appear to react to, lactose etc. Any delay in removing gluten from your diet is robbing you, both of life and its quality of life. Gluten avoidance needs to be lifelong, while things like lactose might become tolerated over time.

Be very clear with yourself why you are avoiding gluten and what you then need to do in order to succeed. Avoidance could mean living a normal healthy life with some disciplines imposed that are initially difficult and not easily understood by other people. However, the payoff is priceless if you achieve this. If you do not the prognosis for celiacs who do not avoid gluten is ugly. A range of auto-immune diseases, cancer, issues with adrenals, candida, etc etc all have a significantly higher probability with celiacs who consume gluten. After 5 years of gluten-free we are all mostly back in the normal range for these diseases.

I would not take any shortcuts with lactose, pills etc to compensate if you eat chocolate, etc. Avoiding many of the food vices like coffee, chocolate etc are a small price to pay for the first 12 months or so. Be positive, I have found some great alternative foods over the past year and my tastes have adjusted to these.

[kkkkaty]

Hi kkaty, there are direct links between GI and lactose intolerance. The damage gluten causes to the intestine can create other food intolerances, these are often temporary. Lactose is common as if yeast/candida issues. If you have not already used a food/symptom diary, you should do so to see if it is only dairy that causes issues. My own experience of being gluten-free for the past 6 months and on a candida diet for 12 months, and lactose free for 7 years is that dairy reaction for me is within 12 hours and this is usually D. I am unsure if there are other more subtle effects from dairy. Most of what I have read tells me that I might be able to return to dairy after a year of being gluten-free.

Instead of cow dairy I use goat or sheep products, yoghurt and cheese and rice milk. The protein structure of these seems to create less issues with our digestion and immune system, and I seem to tolerate these OK. I did use soy for a while. however soy intolerance appears to be quite common, and after some possible reactions to this, I decided it would be eaier to avoid at this stage in my recovery.

My plan is to get to a point where my overall health has recovered to the point where I feel confident to test things like dairy, chocolate etc, and I would guess this will be around 12 months gluten-free. The recovery rate for gluten-free appears to be between 6 months and 5 years, from what I have read and the experiences of others. This depends upon how careful you are, how long you have been celiac, etc. We all react differently around some very common themes.

My advice is to do the hard work now, avoid anything you appear to react to, lactose etc. Any delay in removing gluten from your diet is robbing you, both of life and its quality of life. Gluten avoidance needs to be lifelong, while things like lactose might become tolerated over time.

Be very clear with yourself why you are avoiding gluten and what you then need to do in order to succeed. Avoidance could mean living a normal healthy life with some disciplines imposed that are initially difficult and not easily understood by other people. However, the payoff is priceless if you achieve this. If you do not the prognosis for celiacs who do not avoid gluten is ugly. A range of auto-immune diseases, cancer, issues with adrenals, candida, etc etc all have a significantly higher probability with celiacs who consume gluten. After 5 years of gluten-free we are all mostly back in the normal range for these diseases.

I would not take any shortcuts with lactose, pills etc to compensate if you eat chocolate, etc. Avoiding many of the food vices like coffee, chocolate etc are a small price to pay for the first 12 months or so. Be positive, I have found some great alternative foods over the past year and my tastes have adjusted to these.

tmb,

Thanks for the thoughtful reply. I realize this is a process- a much more complicated process than I first thought. It is an entire lifestyle change and I do have a good attitude about it but it isn't always easy! I don't have any problem giving up whatever I have to- My health is important to me so it's a no-brainer. Still, there is a lot to learn . This forum is extremely helpful- I'm so grateful for this community. The diary is a smart idea. I will do that.

Thanks again.

[tmb]

Hi katy, you said this

Thanks for the thoughtful reply. I realize this is a process- a much more complicated process than I first thought. It is an entire lifestyle change and I do have a good attitude about it but it isn't always easy! I don't have any problem giving up whatever I have to- My health is important to me so it's a no-brainer. Still, there is a lot to learn . This forum is extremely helpful- I'm so grateful for this community. The diary is a smart idea. I will do that.

Thanks again.

As a suggestion for a food diary (and there are different formats that you will find if you google the internet), the one that works for me looks something like this.

I use MS Word table and set up a symptom diary of very possible symptom I experience, skin, gut, energy etc, and take a checkpoint as at my start date. I make my symptoms as descriptive as possible, and easily comparable to how I might compare them in a months time. Its a simple table with perhaps 15 symptoms (even fingernails spots, dry skin, general state of stool etc). The other axis is dates so that I can check them all again in a months time and over 6 months I get a good idea of my overall recovery.

I then have a food diary with a column for each meal a colums for stool, and another for general symptoms. This allows me to track at a micro level how anything I eat might affect my immediate symptoms, stool etc and how long it takes to show.

As long as you update the diary every day or so, you will quite easily work out what does not work for you and what level of reaction and how long it takes to show and clear.

The two levels of table allow you to assess overall progress as well as learning what you react to, over time it becomes quite easy to pick when things change in your diet and cause problems.

Good luck

[kkkkaty]

Hi katy, you said this

As a suggestion for a food diary (and there are different formats that you will find if you google the internet), the one that works for me looks something like this.

I use MS Word table and set up a symptom diary of very possible symptom I experience, skin, gut, energy etc, and take a checkpoint as at my start date. I make my symptoms as descriptive as possible, and easily comparable to how I might compare them in a months time. Its a simple table with perhaps 15 symptoms (even fingernails spots, dry skin, general state of stool etc). The other axis is dates so that I can check them all again in a months time and over 6 months I get a good idea of my overall recovery.

I then have a food diary with a column for each meal a colums for stool, and another for general symptoms. This allows me to track at a micro level how anything I eat might affect my immediate symptoms, stool etc and how long it takes to show.

As long as you update the diary every day or so, you will quite easily work out what does not work for you and what level of reaction and how long it takes to show and clear.

The two levels of table allow you to assess overall progress as well as learning what you react to, over time it becomes quite easy to pick when things change in your diet and cause problems.

Good luck

tmb,

Ok this looks like a good system. I just finished setting up something like this on google docs and am going to give it a try. I like google docs because you can gain access through gmail on any computer, anywhere.

Thanks!