Taking the lactose intolerance seriously

[SueMD]

hi all - just wanted to share in case it's helpful for any one else newly diagnosed. 

It's been nearly a year since diagnosis and I have to confess it's been miserable. Very very slight improvement in gut symptoms but nothing as close as I expected/hoped for. Most days I was in discomfort and had diarrhoea. Although I knew lactose was an issue with newly diagnosed I assumed that my using lactofree milk was enough (and thought that yogurt, butter and hard cheeses were safe). In desperation a couple of weeks ago I went completely dairy free and the transformation has been astonishing. I am nearly (only nearly!) normal. 

I had assumed I was getting gluten cross-contamination all the time, but now it looks like the problem was lactose. So thought it's a pain having to avoid gluten and dairy, I can at least hope that the lactose issue will be relatively short term.

So the moral of this story is if you're not improving as fast as you'd hoped it may well be worth looking more closely at the lactose.

Hope this is of help to someone

Sue

 

[ravenwoodglass]

You also could be having issues with casein which is the protein in dairy. After you have been doing well for a bit you could try adding in just hard cheeses daily for a week. If issues come back then likely casien is the issue as well as. or instead of the milk sugar, lactose.

Hope you continue to improve it can be a puzzle at times when we have other intolerances thrown in with the celiac.

[Ennis-TX]

I have been lactose intolerant for over 10 years also have a allergy to whey. Top it off with dairy other then casein really brings out my autism issues.....yeah. I did a bunch of thinking on the subject and am quite against humans even consuming dairy. The stuff is genetically and hormonal meant for bovine.....not humans. It can really mess with people sensitive to hormones, etc. and it is meant to help the cows baby calf grow (look into how a mothers milk promotes mental, immunological, etc. growth...do you want that which is meant for a another species?) Just saying we do not drink dog milk or even pig milk which is closer to human, I would think breast milk from humans would be safer.

Anyway there are plenty of alternatives, I drink almond and cashew milk, I use coconut milk in cooking, I make dairy free icecream, and cheese sauces. I eat daiya cheese daily, There are dairy free options for everything now days. And if you looking at calories you can go either higher or lower then dairy by choosing to go the coconut full fat route or the lower almond and cashew base route. I also consume coconut milk yogurt daily, and butter flavored coconut oil in cooking and on my grain/carb free breads for buttered toast.

 

[Fbmb]

On 6/15/2017 at 4:46 AM, SueMD said:

hi all - just wanted to share in case it's helpful for any one else newly diagnosed. 

It's been nearly a year since diagnosis and I have to confess it's been miserable. Very very slight improvement in gut symptoms but nothing as close as I expected/hoped for. Most days I was in discomfort and had diarrhoea. Although I knew lactose was an issue with newly diagnosed I assumed that my using lactofree milk was enough (and thought that yogurt, butter and hard cheeses were safe). In desperation a couple of weeks ago I went completely dairy free and the transformation has been astonishing. I am nearly (only nearly!) normal. 

I had assumed I was getting gluten cross-contamination all the time, but now it looks like the problem was lactose. So thought it's a pain having to avoid gluten and dairy, I can at least hope that the lactose issue will be relatively short term.

So the moral of this story is if you're not improving as fast as you'd hoped it may well be worth looking more closely at the lactose.

Hope this is of help to someone

Sue

 

I realized I have issues with lactose too, but rather than giving up dairy I started taking Lactaid anytime I eat it, and for the most part I have been totally normal. Sometimes if it's a lot of dairy I'll take two of them. 

[Ennis-TX]

8 minutes ago, Fbmb said:

I realized I have issues with lactose too, but rather than giving up dairy I started taking Lactaid anytime I eat it, and for the most part I have been totally normal. Sometimes if it's a lot of dairy I'll take two of them. 

Ok people can do what they want, but why poison your self, and just take a pill that makes it less harmful.....there are plenty of lactose free and dairy free options out there. Diary Free Cheese, Nut and seed milks, nut based yogurts, and dairy free ice cream..... Hell I even am now catering dairy free chopped and rolled ice at events, and my bakery is featuring Diary Free Grain free Cheezy Garlic Bread as a special this week.   Now I have a much worse reaction to dairy then most and am more sensitive, I also make and sell a Vegan Parmesan made of hemp seeds and nutritional yeast.

I am going to tell you a few secrets of some WONDERFUL ways to flavor some things. Amoretti Makes Cheddar, Brie, Blue Cheese, Parmesan, Romano, etc extracts dairy free. I also use LorrAnn Oils Cream Cheese, and Cheese Cakes extracts (much cheaper) I use the Amoretti in my Cheese sauces to give them a distinctive flavor. I use the LorrAnn in my baked goods, almond butters, and deserts to give them a non dairy cream cheese flavor.  My Biggest seller is my dairy free Cheese Cake Almond Butter which sells at $12 for a 8oz tub and people keep coming back for it.

[kareng]

25 minutes ago, Ennis_TX said:

Ok people can do what they want, but why poison your self, and just take a pill that makes it less harmful.....there are plenty of lactose free and dairy free options out there. Diary Free Cheese, Nut and seed milks, nut based yogurts, and dairy free ice cream..... Hell I even am now catering dairy free chopped and rolled ice at events, and my bakery is featuring Diary Free Grain free Cheezy Garlic Bread as a special this week.   Now I have a much worse reaction to dairy then most and am more sensitive, I also make and sell a Vegan Parmesan made of hemp seeds and nutritional yeast.

I am going to tell you a few secrets of some WONDERFUL ways to flavor some things. Amoretti Makes Cheddar, Brie, Blue Cheese, Parmesan, Romano, etc extracts dairy free. I also use LorrAnn Oils Cream Cheese, and Cheese Cakes extracts (much cheaper) I use the Amoretti in my Cheese sauces to give them a distinctive flavor. I use the LorrAnn in my baked goods, almond butters, and deserts to give them a non dairy cream cheese flavor.  My Biggest seller is my dairy free Cheese Cake Almond Butter which sells at $12 for a 8oz tub and people keep coming back for it.

I think that is a bit of an over reaction.  Lactaid just gives you the enzyme you aren't making enough of.  I don't think lactose is "poisoning" anyone.  

Dairy free cheeses are fine if you need them, but they are not much like real cheese.  Many of them contain a lot of odd, maybe not great, ingredients.

[Ennis-TX]

11 minutes ago, kareng said:

I think that is a bit of an over reaction.  Lactaid just gives you the enzyme you aren't making enough of.  I don't think lactose is "poisoning" anyone.  

Dairy free cheeses are fine if you need them, but they are not much like real cheese.  Many of them contain a lot of odd, maybe not great, ingredients.

Sorry for my overstatement but to me it is poison, I end up vomiting and all kinds of gastrointestinal distress if I consume dairy. It is not a choice for me just a fact of life my body can not handle it, even things not containing lactose, I am allergic to whey also, but dairy products are just evil in my mind. Top it off with the hormones, etc. its food genetically made to help baby bovine grow up fast, put on weight, and help the baby grow up strong.....not meant for human consumption lol. I put actual dairy consumption on the same lines in my mind as perhaps you see someone drinking dog milk. >.< Ugg just thought how it would be more normal to drink human breast milk then pictured humans in a diary farm set up......yeah that is messed up.

[Jmg]

58 minutes ago, Ennis_TX said:

Sorry for my overstatement but to me it is poison, I end up vomiting and all kinds of gastrointestinal distress if I consume dairy. It is not a choice for me just a fact of life my body can not handle it, even things not containing lactose, I am allergic to whey also, but dairy products are just evil in my mind. Top it off with the hormones, etc. its food genetically made to help baby bovine grow up fast, put on weight, and help the baby grow up strong.....not meant for human consumption lol. I put actual dairy consumption on the same lines in my mind as perhaps you see someone drinking dog milk. >.< Ugg just thought how it would be more normal to drink human breast milk then pictured humans in a diary farm set up......yeah that is messed up.

 

[kareng]

This isn't the place to debate if you think it is morally  wrong to drink milk or eat meat or listen to Black Sabbath....  

 

I want to apologize to the posters with legitimate questions and suggestions - they did not come on here to be shamed for eating dairy - which is  a legal, gluten-free, socially acceptable, etc food group.

[cristiana]

On 6/15/2017 at 11:46 AM, SueMD said:

hi all - just wanted to share in case it's helpful for any one else newly diagnosed. 

It's been nearly a year since diagnosis and I have to confess it's been miserable. Very very slight improvement in gut symptoms but nothing as close as I expected/hoped for. Most days I was in discomfort and had diarrhoea. Although I knew lactose was an issue with newly diagnosed I assumed that my using lactofree milk was enough (and thought that yogurt, butter and hard cheeses were safe). In desperation a couple of weeks ago I went completely dairy free and the transformation has been astonishing. I am nearly (only nearly!) normal. 

I had assumed I was getting gluten cross-contamination all the time, but now it looks like the problem was lactose. So thought it's a pain having to avoid gluten and dairy, I can at least hope that the lactose issue will be relatively short term.

So the moral of this story is if you're not improving as fast as you'd hoped it may well be worth looking more closely at the lactose.

Hope this is of help to someone

Sue

 

This is a really important post - thanks for sharing this, Sue.  I had the exact same problem that rumbled (pun intended!) on for about three years.  I love dairy and my mother has osteoporosis so I had two reasons for not wanting to give up dairy, personally speaking - although I know dairy gets a mixed press.

Anyway, I was OK eating hard cheese in the early days after adopting a gluten free diet which seemed OK but if I drank a glass of lactofree milk it worked like a laxative (sorry tmi) within a few minutes. So I stopped drinking milk.

Things improved as I healed on the gluten-free diet and I found I could drink milky coffee again without the laxative effect but instead I felt bloated.  Not just with plain milk either -  I noticed it was particularly bad with certain brands of bio yoghurts.  I had to have scans and a sigmoidoscopy to check nothing else was amiss - all normal.  So I tried an experiment and went completely dairy free (incl. cheese and lactofree products) for three weeks and the bloating went completely.

I do miss it though so what I tend to do is drink it in moderation and if I feel that bloating coming back I give it a miss for a few days.  I never had these issues until just before my coeliac diagnosis - just like oats, which never gave me any problems, but now - even pure ones - do. It is odd isn't it!

  

[Gemini]

1 hour ago, kareng said:

This isn't the place to debate if you think it is morally  wrong to drink milk or eat meat or listen to Black Sabbath....  

 

I want to apologize to the posters with legitimate questions and suggestions - they did not come on here to be shamed for eating dairy - which is  a legal, gluten-free, socially acceptable, etc food group.

Although I can't eat large amounts of dairy, I do ENJOY that bit of cream I put in my coffee!  I think dairy is fine unless you have a problem with it and then you have to find your happy balance with it.  Sue's post was a good one and has valuable information for those who may be in denial a bit about the dairy issues.  It can be daunting to give up both gluten and dairy but it can be done and you can be happy doing it because your health will improve dramatically. But no dairy shaming for those who can drink it!   

[Jmg]

20 hours ago, kareng said:

I want to apologize to the posters with legitimate questions and suggestions - they did not come on here to be shamed for eating dairy - which is  a legal, gluten-free, socially acceptable, etc food group.

Sorry if that's how it appeared   that wasn't my intention. I just thought it was a funny video and reading  Ennis's post about dog milk reminded me of it. Anyway, apologies! 

18 hours ago, Gemini said:

Although I can't eat large amounts of dairy, I do ENJOY that bit of cream I put in my coffee!  I think dairy is fine unless you have a problem with it and then you have to find your happy balance with it.  Sue's post was a good one and has valuable information for those who may be in denial a bit about the dairy issues.  It can be daunting to give up both gluten and dairy but it can be done and you can be happy doing it because your health will improve dramatically.

This is about where I'm at. I've never been a big dairy eater anyway. In fact I think I subconciously knew it didnt agree with me and that made refuse it as a child. I did gradually introduce it in my diet as I grew older but realised it didn't sit well with me and that it was very had for my skin. Nowadays I mostly avoid it, but I still have in in ice cream, the occasional yogurt or even more occasional bit of mozzarella. All of which I should probably cut out if I were being consistent, my skin would probably thank me for it, but it would be v hard - my options are already limited...

 

 

 

[Jmg]

20 hours ago, cristiana said:

I do miss it though so what I tend to do is drink it in moderation and if I feel that bloating coming back I give it a miss for a few days.

Can you have soy Cristiana? I've developed a taste for soy latte's now. At first I wasn't keen but I persisted and now I quite enjoy them. They're only an occasional treat but its nice to sit in a Costa or Starbucks and have a similarly ludicrous sized drink to everyone else once in a while

I also have the Alpro or Koyo coconut milk for cereals. I much prefer this to milk, it has a very light coconut flavour nothing overpowering. It's based on rice milk so again I don't have it too often as I have enough rice in my diet in any case. 

[Fbmb]

On 7/6/2017 at 6:33 AM, Ennis_TX said:

Ok people can do what they want, but why poison your self, and just take a pill that makes it less harmful.....there are plenty of lactose free and dairy free options out there. Diary Free Cheese, Nut and seed milks, nut based yogurts, and dairy free ice cream..... Hell I even am now catering dairy free chopped and rolled ice at events, and my bakery is featuring Diary Free Grain free Cheezy Garlic Bread as a special this week.   Now I have a much worse reaction to dairy then most and am more sensitive, I also make and sell a Vegan Parmesan made of hemp seeds and nutritional yeast.

I am going to tell you a few secrets of some WONDERFUL ways to flavor some things. Amoretti Makes Cheddar, Brie, Blue Cheese, Parmesan, Romano, etc extracts dairy free. I also use LorrAnn Oils Cream Cheese, and Cheese Cakes extracts (much cheaper) I use the Amoretti in my Cheese sauces to give them a distinctive flavor. I use the LorrAnn in my baked goods, almond butters, and deserts to give them a non dairy cream cheese flavor.  My Biggest seller is my dairy free Cheese Cake Almond Butter which sells at $12 for a 8oz tub and people keep coming back for it.

I'm sorry, but not having enough lactase to break down dairy and taking enzymes to replace them is hardly poisoning yourself. It's not like someone having Celiac and eating gluten. Most people are lactose intolerant and there's nothing wrong with taking digestive enzymes if a person wants to have cheese. I have seen many people on this site suggesting that people take digestive enzymes. So yeah, people can do what they want. You can too. But to sit here and tell someone they're poisoning themselves when they're new to this diet isn't helpful and is actually harmful - because that's not true. Thankfully I know that at this point, because otherwise I would be calling my doctor today after reading your comment.

I choose to follow the advice of my gastroenterologist, who requested that I not cut dairy from my diet and who told me that Lactaid is totally fine to take if I want to eat dairy. He said that a dairy allergy is totally different than lactose intolerance and that if Lactaid fixes the problem I should take it and eat dairy. I don't see why a person would need to just totally cut out a major food group if they can take enzymes and digest it fine. I'm willing to go lighter on dairy but I'm not willing to totally cut it out of my diet. I don't see why I would do that if I can take lactase enzymes. Now if they didn't work that would be a different story. 

This isn't about your personal opinions or biases about dairy. Sounds like you think it's gross and morally wrong to consume it, which is fine. Personally, I think that dairy free cheeses and meat free options are gross and I think they have really strange ingredients in them. I'm not sure people are healthier eating tofurkey or cashew cheese. And to be honest, I'd rather just not eat at all of those are my options. But that hardly makes them poisonous.

[Fbmb]

22 hours ago, kareng said:

This isn't the place to debate if you think it is morally  wrong to drink milk or eat meat or listen to Black Sabbath....  

 

I want to apologize to the posters with legitimate questions and suggestions - they did not come on here to be shamed for eating dairy - which is  a legal, gluten-free, socially acceptable, etc food group.

Thanks kareng. I totally agree with you. 

[Ennis-TX]

26 minutes ago, Fbmb said:

I'm sorry, but not having enough lactase to break down dairy and taking enzymes to replace them is hardly poisoning yourself. It's not like someone having Celiac and eating gluten. Most people are lactose intolerant and there's nothing wrong with taking digestive enzymes if a person wants to have cheese. I have seen many people on this site suggesting that people take digestive enzymes. So yeah, people can do what they want. You can too. But to sit here and tell someone they're poisoning themselves when they're new to this diet isn't helpful and is actually harmful - because that's not true. Thankfully I know that at this point, because otherwise I would be calling my doctor today after reading your comment.

I choose to follow the advice of my gastroenterologist, who requested that I not cut dairy from my diet and who told me that Lactaid is totally fine to take if I want to eat dairy. He said that a dairy allergy is totally different than lactose intolerance and that if Lactaid fixes the problem I should take it and eat dairy. I don't see why a person would need to just totally cut out a major food group if they can take enzymes and digest it fine. I'm willing to go lighter on dairy but I'm not willing to totally cut it out of my diet. I don't see why I would do that if I can take lactase enzymes. Now if they didn't work that would be a different story. 

This isn't about your personal opinions or biases about dairy. Sounds like you think it's gross and morally wrong to consume it, which is fine. But that hardly makes it poisonous.

Enzymes do not help me, it is a food I am intolerant to and have been for 10+ years, and a allergy to whey...personally it really is poison to me.

I am sorry for putting my mental mindset over others when it comes to dairy, just my personal response to it is quite bad and has it drilled into me that dairy=poision much longer then I even had the celiac diagnosis.

If your fine with dairy drink it eat it what ever, everyone has a different body chemistry and system. I was referring to those who do have adverse reactions to and get sick. There is no point if trying to force something in your diet if it makes you sick and is counter productive to your healing, I have personally found suitable alternatives to everything that has dairy and am content with it.

Ugg screw my OCD and autism unfollowing and just going to stay out of this I this one.

[GFinDC]

On 6/15/2017 at 6:46 AM, SueMD said:

hi all - just wanted to share in case it's helpful for any one else newly diagnosed. 

It's been nearly a year since diagnosis and I have to confess it's been miserable. Very very slight improvement in gut symptoms but nothing as close as I expected/hoped for. Most days I was in discomfort and had diarrhoea. Although I knew lactose was an issue with newly diagnosed I assumed that my using lactofree milk was enough (and thought that yogurt, butter and hard cheeses were safe). In desperation a couple of weeks ago I went completely dairy free and the transformation has been astonishing. I am nearly (only nearly!) normal. 

I had assumed I was getting gluten cross-contamination all the time, but now it looks like the problem was lactose. So thought it's a pain having to avoid gluten and dairy, I can at least hope that the lactose issue will be relatively short term.

So the moral of this story is if you're not improving as fast as you'd hoped it may well be worth looking more closely at the lactose.

Hope this is of help to someone

Sue

 

Thanks for your post Sue.   What happened to you is an example of why it is best to start the gluten-free diet without dairy.   It can be hard to identify what food is causing a digestive problem when our guts are constantly irritated and are reacting to all foods.  So people can go months having symptoms from dairy and not realize what is causing the issues.   Besides lactose intolerance, the possibility of casein intolerance is another issue that can hit people.

Starting the gluten-free diet with the least chance of irritating foods being eaten regularly is just good sense.  Once a person's digestive system is somewhat healed they can add foods like dairy and oats and test them.

For someone with dairy or oat issues eliminating them from the diet early can potentially save a lot of discomfort and speed healing.

[cristiana]

On 7/7/2017 at 11:58 AM, Jmg said:

Can you have soy Cristiana? I've developed a taste for soy latte's now. At first I wasn't keen but I persisted and now I quite enjoy them. They're only an occasional treat but its nice to sit in a Costa or Starbucks and have a similarly ludicrous sized drink to everyone else once in a while

I also have the Alpro or Koyo coconut milk for cereals. I much prefer this to milk, it has a very light coconut flavour nothing overpowering. It's based on rice milk so again I don't have it too often as I have enough rice in my diet in any case. 

Hi - for some reason soy was a big problem and really hurt my stomach after DX and I never went back to it - it may be fine now though?  However, I agree, Alpro and Koyo are superb.   I live in the country so our local supermarket (which is quite a small one and rather limited) doesn't always sell these milk alternatives and I can't recall what they do sell exactly but I gave up buying them as they seemed to contain very little calcium.  But for the days I'm avoiding dairy I'll try one in a Costa for a treat - thanks for the tip!  

Another occasional treat I must admit to enjoying is black coffee with whipped cream!  Yum!  You see - the way I excuse this extravagance as it is only a little blob of dairy, compared to a glassful, and therefore (although I'm probably deluding myself) it contains less lactose!

Open Original Shared Link

[Jmg]

That's an interesting list. I've rationalised having the odd ice cream on the basis that there's not a lot of dairy in them these days, Open Original Shared Link 

Although I don't know if my problem is with lactose or at least solely, I think it's maybe the casein. Reason being is that I don't get major GI symptoms, other than some bloating, its more my skin that suffers which is more towards milk allergy? Although I tested negative for that on my NHS allergy panel so who knows! 

You can get some of the coconut milks in long life format by the way if its difficult to source the fresh varieties. They still taste pretty good. 

I love whipped cream so I may give that a go. You're a bad influence!

[Awol cast iron stomach]

Getting pretty heated everyone. Deep breath . Don't forget we are here to help and support one another. You all make valid points that are from each person's experience and perspective.  Wise people can decipher the difference and apply all your posts as needed. Hopefully my comment helps to mediate not further inflame the fire.

Some are able to take digestive enzymes and that is great more food options for them. However those with several intolerance s or co morbid allergies with the celiac may not be able to take digestive enzymes. Manufacturing can add quite a bit of ingredients that may include ones who are not able to take them those binders, fillers, flow agents, anti caking etc are prevalent in supplement and processed food Industry.

That's why gluten-free in DC reminded us all whole foods are best at the start. 

As for me I'm out on lots of things still. Gluten, corn, cow milk products are highly inflammatory to my body. The  joint pain is just not worth it. I started on store bought almond and By golly they fortify that with corn. Ah and  corn/corn derivatives are not required to  labeled. One of the culprits holding me back in my healing process. So now I make my own almond milk. I use coconut for many of the desserts or my kids homemade waffles. It appears I developed a casein issue after my challenge.

Everyone is working from their own experience /perspective and does not want another to experience additional pain or issues. Most of all let's not chase away the people who need us who may not be use to our heated debates to blow off steam.

Now go have  your favorite morning drink with or without cow milk.

[SueMD]

blimey I've set the cat amongst the pigeons here

Interesting debate tho - from another angle - I live in an area (of the UK) where the dairy cows regularly get in the way of the school bus, and are known by name by the farmer (and the local kids), and I feel no conflict in drinking milk if it comes from sources like this. Having said that we also ended up looking around a mechanised dairy farm recently where the cows have no access to outside space and it practically turned me vegan overnight...  

On a more mundane level, I seem to be getting on fine with either avoiding dairy or using Lactofree stuff, or popping lactase pills if I'm out and about and have little choice. A definite, huge improvement over the last year, which is a massive relief. I'm finding it hard to understand why the docs and dieticians don't warn people about the lactose issue when they are diagnosed...

Thankfully there's places like this forum to keep us informed.

Sue

 

[Panama]

I am lactose intolerant as well as having both gluten and nut sensitivities. I also dislike coconut as a flavoring so most coconut and nut based milks are a problem for me. On the occasions that I drink/use dairy, I will use Lactaid, use Lactaid tablets, eat gluten free yogurt, etc. This has worked well for me. I have discovered that Carnation powdered milk is gluten free and lasts longer than the fresh milk (for me at least) so I have been using that instead of fresh milk.