Lactose Intolerance

[Dolcenotte]

I have a very strong suspicion I am lactose intolerant due to celiac disease. I've sometimes felt something off when I drank milk or ate cheese. I would like to know your experiences with lactose, what we should avoid, and what we really need to avoid to not feel the same way gluten affects us. I just found out my birth control pill has lactose in it. I also saw a rather extensive list of what to avoid including baking mixes, coldcuts, whey, curd, etc. Do I need to stay away from all these things in order to heal my ulcerated, villi-less intestines? I understand that the lactose may not be absorbed right now because there is no lactase for them to grip onto, but will it make my condition worse to eat/drink dairy? It's very hard to figure out if i am healing when I continue to blow up and have bathroom issues. I'm going to start by drinking lactose free milk only (since I drink a lot of milk)and see if I feel a difference. Can anyone tell me about their experiences with lactose if they were intolerant? Thanks. Also, how can you tell the difference between lactose intolerance and casein allergy? Also, I read that if it is just lactose intolerance that when my intestines heal, I can introduce it again. is it possible that you can remain lactose intolerant even after healing? Sorry about all the rambling, but I'm so upset that my diet may become more restricted and its scaring me. I'm beginning to feel hopeless about this!!!

[Dolcenotte]

Also can I be tested for lactose intolerance and casein at the allergist?

[Ursa Major]

A naturopathic doctor would be a better bet than an allergist when it comes to intolerances. You would be wise to give up ALL dairy right now, with your villi that bad. And yes, it is likely stopping you from healing.

In all dairy I mean milk, cheese, yogurt, sour cream....... the works. You can try reintroducing dairy after about six months, when the villi have had a chance to regenerate (for some people, depending on the degree of damage, it takes a year, and many of us just simply don't tolerate casein).

If you can afford it, Enterolab is your best bet for finding out if you are casein intolerant.

[Puddy]

I know I've seen several people post on here that you should go dairy free for the first few months when you start the gluten-free diet. I've been lactose intolerant for 30 years, have always used Lactose free milk and lactaid pills when eating cheese, ice cream, etc. It has always worked for me. I asked my GI Dr. who diagnosed my celiac disease if I should go off dairy and would it hinder my healing if I still eat it. She said if the pills and milk work, go ahead and continue with them. It would not prevent my intestines from healing. And in 3 months, try eating the dairy with no pills because I may be able to digest it with no help. I've been doing it for 2 months now and so far so good.

[Dolcenotte]

Thanks for responding.

Ursa, so does that mean I can have products that contain whey? What if I drank lactaid as a replacement for regular milk? so the allergist does not do these kind of tests? What is enterolab?

Puddy, how do these lactaid pills work? I never heard of this!

I'm still going to try to cut out regular milk and test the lactaid for a few days. I'll probably know how it is working when I see how I feel in a few days. I'm also going to see a great doctor and nutritionist in May and they can help me with this issue as well.

[Puddy]

Thanks for responding.

Ursa, so does that mean I can have products that contain whey? What if I drank lactaid as a replacement for regular milk? so the allergist does not do these kind of tests? What is enterolab?

Puddy, how do these lactaid pills work? I never heard of this!

I'm still going to try to cut out regular milk and test the lactaid for a few days. I'll probably know how it is working when I see how I feel in a few days. I'm also going to see a great doctor and nutritionist in May and they can help me with this issue as well.

It's a tablet that you take with your first mouthful of a dairy product. It has the enzymes in it that you need to digest lactose. I take the fast-acting type. I think I've read on other posts here that some people take two at a time. But for me, one has always been enough. Good luck!

[holiday16]

Great link for percentages of lactose in different foods. I used this to figure out that I was reacting to lactose. I would have problems after drinking a hot chocolate mix, but other dairy products didn't seem to be as bad. It all made sense looking at this site because the choc. mix had nonfat milk in it which is about 50% lactose. I find I do o.k. now if I just don't have it more than a couple times a week or nonconsecutive days, but if I have dairy for 3 days in a row I'll feel terrible and my stomach will begin hurting. In the beginning when I started reacting I had to totally cut out all lactose, but over time I can have some. The lactaid tablets helped to an extent, but would not work for me on anything with high lactose.

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The odd thing was my lactose problem did not show up until after I had been gluten-free for almost a year. Had a small amount of gluten on accident and that seemed to trigger it after that for whatever reason.

If you can't tell if it's lactose or casein try something really high lactose on the list and then a few days later low lactose and see if there's a difference.