Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Taking the lactose plunge

My daughter was diagnosed with *probable* AS about a year and a half ago, and following an unsuccessful standard protocol with NSAIDS and Enbrel began the LSD about 9 months ago. She has made progress, mostly avoiding flares in her weight bearing joints and hands, but her back still hurts daily.

So I've finally talked her into trying to give up dairy, but I'm puzzled on how strict to start. Getting her to totally give up a food category has been hard, as she lost so much weight on the NSAIDS - went from 165 lbs to 120 in 6 months. So we're probably going to start with allowing her dairy that seems to be well tolerated by most, and see where that gets her in a month.

But I have a big question on lactose - for those of you who can tolerate some dairy without flares (greek yogurt, hard cheeses, etc.), have you ever tried the Lactaid Milk? My thought process is that if it's a matter of being able to digest the lactose, and not a casein issue, does the addition of the enzyme solve your problem? Just one of those things I ponder...thanks for any input!

I have been dairy free for many years, and have no problems keeping my weight stable at all, I promise!

And just my 2 cents, but I say if you are going to go for it, just do it! I wouldn't want to waste time doing it 1/2 way, cuz then you are struggling but still not knowing officially how much it may be effecting you. I would just go at least one month dairy free and see if she feels any different.

For me aged dairy doesn't necessarily inflame my intestines right away, but rather causes a slow inflammation in them over time, (like it creates ulcers that take a while to develop, but won't pop up after just one serving) and also I found it would cause very painful back and joint inflammation days later, it literally took days after eating it for me to notice the difference.

I have been dairy free most of my life, but then went on the SCD diet where they encourage 24 hour aged homemade yogurt, where all the lactose has in a sense been digested by the 'helpful bacteria', so I did as instructed, but I look back and can watch a timeline of inflammation develop in relation to eating dairy during that time, then I cut it out, and continued SCD, then a looser Paleo diet, then NSD, but keeping dairy out of my diet has been of great benefit to me personally, though not all would agree!! Many on here still eat yogurt, which you can always add back in if she doesn't feel any different after a month of going without. I also lost a lot of weight when I first went on SCD, and got super skinny, but once I found the right diet for me, plenty of weight came back, and I promise I don't struggle with being too skinny on NSD.

I have lots of dairy free ice cream, cream pie, fresh almond milk smoothies, hazelnut chocolate "Milkshakes" and treat recipes on my website that are full of good fats and calories for keeping the weight on.

I say this with the best of intentions. I would love to go back in time, even just 4 or 5 years, knowing what I know now and prevent all the fusing that has occurred in my spine since then...

I wish you and your daughter the best of luck!

-Andrea

Thanks for the advice, Andrea. I agree, I'd rather take the complete plunge for a month to see how things go. The completely dairy free vs. just lactose free thing has been one of those things we've wrestled with, and it's mostly my curiosity over whether or not it's the digestive system being so damaged it can't produce the enzyme, or if it's so damaged it can't process the dairy even with it. I work hard to try to keep things as "normal" for her as I can. It's hard to be 17 and have your mom control every bite that goes in your mouth! But she's been a trooper, and doesn't hate the coconut milk ice cream I bought her She's only got a couple more years at home while she's going to college, so figuring out what works for her and doesn't is a major goal before she's on her own!

Oh, and thanks so much for all the recipes you share - they have helped so much in the past months. Even though I'm new to posting, the site has been a regular go-to resource for me!

For me, and anyone "allergic" to dairy, its not the lactose that is the problem, but the proteins. For me its the casein (that's very common) and maybe the other proteins like whey, but I have to have that checked out still.

Casein allergy /sensitivity is as common as gluten / celiac problems (so say the sources I've read).

Now for me and others, it may just be the cow casein (i have to have that checked out as well), so she may be able to do goat or sheep.

Thus:

Milk substitute: nut milk. I put it in my tea, on my granola, and even made pumpkin custard with it. I want to try my maple custard with it next. I'm not starch free…..

Yogurt substitute: Greek style coconut milk yogurt. Its perfect substitute. Smooth and creamy and good tasting. And coconut milk is very high in fat and calories.

Ice cream substitute: Coconut milk and Nut milk ice creams are both very good and very high in fat and calories.

Goat cheeses and sheep cheeses are good. Romano is naturally sheep. Feta is often goat or sheep. There's an excellent goat brie around here. Manchengo is an excellent sheep cheese from Spain. There's also an excellent drunken goat cheese from Spain.

I'd say if you can find starch free: switch to coconut milk yogurt and ice cream, switch to nut milk, and try goat or sheep cheese.