Dh Celiac, I Maybe Milk Intolerant, Help!

[mindwiped]

DH is a celiac and has been diagnosed since 2001. We know his diet and are doing well with it. I've had a LOT of trouble with migraines, and the neurologist I saw on Wednesday wants me to try milk/dairy free. I asked for clarification and the nurse told me to try to avoid any product with milk anywhere on the label (which means its not just lactose, right?). Obviously, this is all a new playing field for us, and I'm beginning to realize that there's milk in everything. I feel like I'm going through the first few weeks of going gluten free all over again, which in a sense I am. I'm not worried about his gluten-free snacks and crackers being lactose free, as I don't eat those (we are a mixed gluten house, but I am extremely careful and he has no issues with CC), but for main meal 'stuff' do any of you have any recommendations? I did get the Earth Balance 'Butter' spread, and it's really good, is there a vegan 'cheese' that's good (since I checked and simple lactose free still has milk proteins)? A sour 'cream'? I do want to give this a fair trial, as I'd been having daily migraines, and they stopped Thursday morning, which is when I started a new preventative medication and went dairy free, so if the dairy free is doing this much to help, I'll learn to live without milk. FYI- I did grab plain unflavored rice milk as a liquid milk substitute, I rarely drink liquid milk, and use milk as a baking ingredient, so I went with the one least likely to have gluten or cause any other food allergies due to exposure (soy). Finally, is there anywhere like here for an adult with a milk intolerance? Any boards I could find were all infants, which had good info, but it was about formula.

Thank you for any help you can give me!

[Mother of Jibril]

Taste-wise, my favorite non-dairy milk is almond milk You might also be able to tolerate goat's milk (and sheep's milk) since the proteins are different. Some people don't like the taste, but IMO goat's milk yogurt and cheese is fantastic! Unfortunately, as you've already discovered, a lot of the vegan "cheese" still has casein. That's the culprit you want to avoid.

This website is a really helpful place for people with all kinds of intolerances and autoimmune disorders... I've learned SO much. Since last April I've gradually been forced to take dairy, gluten, corn (and all corn derivatives), peanuts, tree nuts, celery, parsnips, and just about all processed foods (including chocolate ) out of my diet. I don't know what I would have done without the support of this forum.

[mindwiped]

You're right, everyone here has been very sweet about everything. Even just mostly lurking, I learn so much. I did get by my local whole foods, and the dairy guy there is great (if anyone is in Overland Park KS, shout out for Will!) He sent me home with some of the Vegan Gourmet Montery Jack and Mozzarella, which are totally milk free. Since they said no dairy, I didn't go the goat's or sheep's milk route, but if I don't have a migraine flare up after this 10 day dairy free trial, I may try some just to keep the diet a little lighter in dairy. Since I never really learned to like yogurt, I just needed cheese, milk and sour cream, which I got a tofu version to try in a recipe later on.

[RiceGuy]

Coconut milk is also very yummy, and healthy too.

[mushroom]

I really enjoyed the hemp milk. Wish we could get that and almond milk here (New Zealand, are you listening?!!)

[purple]

My dd uses almond, rice or soy milk. She likes soy the best. I use any of them for cooking/baking. I cook with light olive oil. It works great in Chex Party Mix! I use soy sour cream in homemade tortillas or muffins. I found a really good gluten-free/df waffle recipe if you want it. We pop popcorn in lots of coconut oil so you don't need any butter...delicious! Mexican pizza or BBQ chicken pizza is fine w/o cheese.

You can crunch up gluten-free Fritos or tortilla chips to put on chili, tacos, mexican foods, pizza, just about anything...my dd is creative with chips and nuts. You can make enchiladas lots of ways w/o cheese.

I use Earth Balance for cookies. I make lasagna and layer it with veggies/mashed potatoes and no cheese. My dd loves baked potatoes, plain, no butter, or with chili and green onions.

I read you can use a more protein milk like soy for making boxed pudding but add some cornstarch to thicken it.

[mindwiped]

My dd uses almond, rice or soy milk. She likes soy the best. I use any of them for cooking/baking. I cook with light olive oil. It works great in Chex Party Mix! I use soy sour cream in homemade tortillas or muffins. I found a really good gluten-free/df waffle recipe if you want it. We pop popcorn in lots of coconut oil so you don't need any butter...delicious! Mexican pizza or BBQ chicken pizza is fine w/o cheese.

You can crunch up gluten-free Fritos or tortilla chips to put on chili, tacos, mexican foods, pizza, just about anything...my dd is creative with chips and nuts. You can make enchiladas lots of ways w/o cheese.

I use Earth Balance for cookies. I make lasagna and layer it with veggies/mashed potatoes and no cheese. My dd loves baked potatoes, plain, no butter, or with chili and green onions.

I read you can use a more protein milk like soy for making boxed pudding but add some cornstarch to thicken it.

Thank you. The dairy free diet does seem to be helping the migraines, I've got 2 more trail days dairy free, and then I attempt to reintroduce it, but the reintroduction may wait for Friday evening, so that it won't interrupt school if the reintroduction flares a migraine and I'm dairy free for good. I've felt horrific for my Chemistry lab partner, I'm running on auto-pilot and she's been out of school since the 1970s and struggling. Now that I'm not constantly on the migraine meds, I'm a bit more help to her, and not just hurrying to get my half done to go home and try to sleep it off.

I do have more questions, I'm beginning to feel like I did at the beginning of dh's diagnosis Does the coconut oil taste like coconut? If so, is it nice fresh coconut, or the icky dried sweet yuck? Have any of you all tried the Purely Decadent Coconut Ice Cream? I'm on Thyroid meds and trying to watch the soy, and wondered about it tasting coconutty too. I did make pizza last night, dh is out of town for work, or I'd have used a Chebe crust (I keep one old gluteny pan away from all the others) and I used a mix of Vegan Gourmet mozzarella and Monterrey jack. I was really pleased with the pizza, but I will have to watch how often i have it as it is soy, but it was yummy, fyi for any of you all who are off dairy. Another board I'm on also recommended Dr. Cow vegan cheese. I did grab a tub of the Earth balance spread for toast and whatnot, and I'm really happy with it! It made great 'butter' chicken used 50/50 with canola oil in a recipe I have.

Thank you all who have taken the time to read all this and reply, I do know that this is something you pay forward, but I'm grateful for all of you paying it forward to me!

[taweavmo3]

The Purely Decadent coconut ice cream is SO good! You will love it.....the coconut flavor dissapears once you add other flavors. We love the chocolate. In fact, we loved it so much, and since we are a casein free family of six, lol.....I just recently bought an ice cream maker to make my own coconut ice cream. I made some for my brother in law, who is also on a dairy free trial for his migraines, and he loved it. It's so nice to not have to miss out on ice cream!

We also don't do soy products, so we've just done without cheese, sour cream, and cream cheese. I used to think it would be impossible to go without cheese, but you really do get used to it. Almond milk is our favorite milk to drink, and I bake with either almond or coconut milk. The coconut flavor really only comes out if you sweeten it, once you add savory seasoning, the coconut taste dissapears. I like coconut milk and coconut oil for the good fats and health benefits.

Good luck, hope the trial works for you. I used to have migraines too, they are miserable!

[RollingAlong]

That is so cool that your neuro recommended you try this! My migraines improved significantly when DH went gluten-free/CF and I went along for the ride. I was way too spacey to attempt a mixed kitchen! Now my meds are down by 50% even though I am eating known "trigger" foods like dark chocolate. I've made sure my neuro knows about this diet.

My husband prefers that his coconut oil taste coco-nutty so I can tell you he does not like Spectrum brand. I'm not a huge coconut fan, but I like the vanilla coconut ice cream. It is costly, so I'm gearing up to make it at home. Even if I weren't dairy free, I would stick with this ice cream, because you don't have to worry about the hormones in the dairy and it is that good.

We also like cooking with ghee or clarified butter. I have bought an organic brand, Purity Farms, that is lactose and casein free.

I found headaches improvements from both gluten-free and CF. Some improvement was immediate and direct, some took awhile. I found that my menstrual cycles were much more manageable and I needed less thyroid med.

I heard that the alternative cheeses were so bad that you should wait a few months before trying them! So we didn't and now we know that he doesn't tolerate soy anyway....I think you can make a form of cheese from nut milk. I haven't looked into this yet. But I do want to say that home made nut milk is way better than store bought. I'm not positive it is cheaper unless you're in a buying club or co-op, but it tastes much better and the leftover nut pulp can be dried and makes a nice low carb, gluten-free flour.

Here's a no dairy web-site you may find handy/inspiring. I don't know of any forums. Open Original Shared Link

good luck with your trial!

[purple]

Thank you. The dairy free diet does seem to be helping the migraines, I've got 2 more trail days dairy free, and then I attempt to reintroduce it, but the reintroduction may wait for Friday evening, so that it won't interrupt school if the reintroduction flares a migraine and I'm dairy free for good. I've felt horrific for my Chemistry lab partner, I'm running on auto-pilot and she's been out of school since the 1970s and struggling. Now that I'm not constantly on the migraine meds, I'm a bit more help to her, and not just hurrying to get my half done to go home and try to sleep it off.

I do have more questions, I'm beginning to feel like I did at the beginning of dh's diagnosis Does the coconut oil taste like coconut? If so, is it nice fresh coconut, or the icky dried sweet yuck? Have any of you all tried the Purely Decadent Coconut Ice Cream? I'm on Thyroid meds and trying to watch the soy, and wondered about it tasting coconutty too. I did make pizza last night, dh is out of town for work, or I'd have used a Chebe crust (I keep one old gluteny pan away from all the others) and I used a mix of Vegan Gourmet mozzarella and Monterrey jack. I was really pleased with the pizza, but I will have to watch how often i have it as it is soy, but it was yummy, fyi for any of you all who are off dairy. Another board I'm on also recommended Dr. Cow vegan cheese. I did grab a tub of the Earth balance spread for toast and whatnot, and I'm really happy with it! It made great 'butter' chicken used 50/50 with canola oil in a recipe I have.

Thank you all who have taken the time to read all this and reply, I do know that this is something you pay forward, but I'm grateful for all of you paying it forward to me!

I use any brand of unrefined coconut oil, whatever is cheapest, like Spectrum. My dd hates coconut but loves popcorn popped in the oil. I don't think it tastes like coconut but has a faint sweetness to it, which is a good thing. Coconut oil is also good on toast.

[mindwiped]

That is so cool that your neuro recommended you try this! My migraines improved significantly when DH went gluten-free/CF and I went along for the ride. I was way too spacey to attempt a mixed kitchen! Now my meds are down by 50% even though I am eating known "trigger" foods like dark chocolate. I've made sure my neuro knows about this diet.

My husband prefers that his coconut oil taste coco-nutty so I can tell you he does not like Spectrum brand. I'm not a huge coconut fan, but I like the vanilla coconut ice cream. It is costly, so I'm gearing up to make it at home. Even if I weren't dairy free, I would stick with this ice cream, because you don't have to worry about the hormones in the dairy and it is that good.

We also like cooking with ghee or clarified butter. I have bought an organic brand, Purity Farms, that is lactose and casein free.

I found headaches improvements from both gluten-free and CF. Some improvement was immediate and direct, some took awhile. I found that my menstrual cycles were much more manageable and I needed less thyroid med.

I heard that the alternative cheeses were so bad that you should wait a few months before trying them! So we didn't and now we know that he doesn't tolerate soy anyway....I think you can make a form of cheese from nut milk. I haven't looked into this yet. But I do want to say that home made nut milk is way better than store bought. I'm not positive it is cheaper unless you're in a buying club or co-op, but it tastes much better and the leftover nut pulp can be dried and makes a nice low carb, gluten-free flour.

Here's a no dairy web-site you may find handy/inspiring. I don't know of any forums. Open Original Shared Link

good luck with your trial!

I've gotta give my neurologist big thumbs up for trying to attempt dietary modifications along with the medications. I know many neuros will just drug you up and send you home, so her willingness to try this is wonderful. They've also mentioned caffeine free, but I've tried that in the past, and for me its not a trigger, so, if I'm giving up milk chocolate, and all the chocolate candy at the checkout stand, I'm not giving up chocolate completely, thank goodness for vegan baking chocolate chips!

I worried about the cheeses, in fact, the guy I mentioned at Whole Foods laughed at me, since I mentioned 'Do I need to walk away from cheese for a couple of months to forget what it tastes like and then try this, like we did with dh and gluten-free bread?' The Vegan Gourmet really is good! This is from someone who had cow's milk cheese last week, so it's really good. I don't know if I could eat it cheese and crackers, but I made that pizza, and all it's missing is the Parmesan, which I've read I should sub nutritional yeast. I really don't drink liquid milk, so while I appreciate all the advice on the milks, I'll probably end up just grabbing whichever is on sale or cheaper when I go in, which last week was rice milk. It bakes fine, and tastes fine in scones, so it's fine with me, and I hadn't done cereal with milk in ages, so I won't even miss it there.

Thank you all!! I'm really grateful!

[RollingAlong]

I'm not drinking the nut milks, just cooking with it - custards mainly. I use a mix of coconut milk and nut milk. I think it works better than store bough because I can control the thickeness. I guess I am really making nut "half and half" This may be more than you want to get into for just a trial.

I forgot to mention the blog, Elana's Pantry. Her recipes are gluten-free/CF and there's a forum for questions. Here's her brownie recipe:

Elana's Pantry - brownies gluten-free/CF

I hope you keep us posted on how your trial goes - here's to fewer migraines!!

[mindwiped]

I've been really good, it's been an entire week, completely dairy free this morning. The way the papers read, they want you to try to go as dairy free (I read as dairy lite-won't work, but they don't think they'll talk people into truly no dairy) as possible, and then 7-10 days later dairy do a dairy challenge, since it won't do the villi damage that gluten will, but after being daily lite or in my case dairy free, you'll know right away if dairy's going to be an issue for you. Since I knew more from DH about 'gluten lite' and how that was a no-no, I went with the assumption that at least for the self diagnosis part of this, I need to be completely off dairy, so if anything said dairy anywhere on the label, it's been out of my diet. Post challenge, if I find that the small amount they use in Italian Dressing doesn't flare a migraine, I may cheat that much, but I'm finding that this really is helping me, and I bet that tomorrow evening when I have that pizza and ice cream (I'm going out with a bang!) I'll have a migraine on Saturday. Plus, some of my lifelong sinus trouble seems to be getting better, I'm nose breathing first thing in the morning, without medication, and I could clear my nose by just blowing it, no saline irrigation. (Sorry if that was TMI for some). I will definitely let you all know my outcome and please realize that I am still thankful for all your advice and recommendations

[mindwiped]

OK, well I've challenged, and I have an answer, I'm off dairy. I finished up classes last night, and hit the chocolate milk, followed by Mexican food, covered in oozy gooey cheesy sauce. If I'm leaving the land of dairy forever, I'm going out with a bang...and bang my skull did, repeatedly all day today. I'm also all nasal drainage-y and my throat hurts, as well as bloated and gassy (I figure since most of ya'll are celaics, or family of, a little gas talk won't scare you) So thank you for the advice and support, I maybe back in here crying for help to find replacements for holes in some of the diet, but I think I've got a lot of the basics down, as we were never an extremely dairy heavy household anyways.

[Mother of Jibril]

I actually miss dairy a LOT more than gluten... so I know it's not easy. At least you have an answer now

BTW... this morning I bought some groceries and I noticed that my co-op is now stocking "So Delicious" coconut milk (they also make coconut yogurt and ice cream). It's good!! You can drink it straight out of the carton. No dairy, gluten, soy, nuts, or corn

[mindwiped]

I actually miss dairy a LOT more than gluten... so I know it's not easy. At least you have an answer now

BTW... this morning I bought some groceries and I noticed that my co-op is now stocking "So Delicious" coconut milk (they also make coconut yogurt and ice cream). It's good!! You can drink it straight out of the carton. No dairy, gluten, soy, nuts, or corn

I've seen the 'So Delicious' coconut milk ice cream in my whole foods, and have been so tempted, but it's 3.99 a pint, and I can get a 1/2 gallon of the soy or rice dream cream for the same price, or even cheaper if I get the whole food's house brand. Has anyone tried it, and if so, is it worth the extra?

I am glad to have an answer to what had been going on for the last 6-8 weeks, and I'm glad it's something as small as a dietary change. And, unlike gluten, milk's clearly labeled, and easy to read, so that's easier at the grocery store. You'll all recognize me as the squinting woman with the cart full of fruits, veggies, meat, and vegan food--which is a weird combo, but vegan guarantees no milk or butter. I confused the Aunt Annie's pretzel people on Wed, they had no clue what vegan meant, it was almost funny, except it was sad.

[RollingAlong]

10 days and you've slain the migraine beast... that is so wonderful!!

In general, I don't miss dairy that much; but I find avoiding dairy to be a pain. You come off as so picky in restaurants - "I'd like the X, please hold the Y." And parmesan cheese is everywhere... I had to send some cabbage back to kitchen the other day. It never occurred to me to have them "hold the parm" on cabbage!

I've had the soy ice cream (but not the rice) and I can say without hestitation that the coconut milk ice cream is absolutely superior. Even if I could eat dairy, I think I would just eat this instead. I am determined to learn to make it at home in the interest of financial sanity.

The first time I tried the vanilla it had a very mild coconut flavor, but I don't detect any of that in the chocolate. The texture is fantastic, it is everything that I do miss about dairy, that slightly melted ice cream mouth-feel.

Good luck with it, it will be interesting to see if you still have migraines at all (weather, stress?) or if this is it, trigger-wise. I still have weather migraines, but they are very manageable.

[Mother of Jibril]

I've seen the 'So Delicious' coconut milk ice cream in my whole foods, and have been so tempted, but it's 3.99 a pint...

Ouch! I think I paid 4.79 for a half gallon. A little more expensive than soy, but definitely worth it, especially for my casein-intolerant toddler (who could really use the fat).

Quick edit... I thought you meant 3.99 for a pint of the milk. Makes more sense for ice cream

[mindwiped]

I do have some headache/migraine response to weather, we had the snowstorm come through with the dairy challenge, and I'm sure it aggravated it, but I know if I'm feeling one of those migraines coming on, to either hit my nasal spray or the OTC afrin. I also know that blood pressure spikes are a trigger, the first round of 'what in the world is wrong with me?' was solved by a diagnosis of vascular migraines, and so I take a blood pressure medication, so that it can't spike and trigger an episode. I was working childcare, and about 5 PM, the noise and stress would just have me tense a little, and the would trigger a full blown event. The other trigger is extreme stress, the last doozy was going to visit Dh's grandparents. They love him, but grandpa smokes in the house, and they have a dog, so I'm an allergy mess (it's in BFE Oklahoma-no hotel-no grocery store in town). And they try so hard to keep dh gluten-free, but every time she's forgets something, which for a 70 year old woman, who's not having to do this daily, I love her for trying, but....you all know how that goes, and he loves her to much to tell her, so I can't step in or I'm the evil grand-daughter-in-law. Anyways, yes, I am very lucky, 10 days after getting to the neurologist and I have a answer, and its working for me. Now if I could figure out if I really need the Topamax, or if it's just making me stupid...but this isn't necessarily the board for that.

[RollingAlong]

I'm in the same place - do I still need that 50 mg of Topamax? I think I do get rather stupid right before a migraine, (prodome?). And lately I sometimes just get the stupid and don't get the headache.

What is your preferred migraine forum, BTW? This is one of the highest quality boards ever, IMO.

[mindwiped]

I'm in the same place - do I still need that 50 mg of Topamax? I think I do get rather stupid right before a migraine, (prodome?). And lately I sometimes just get the stupid and don't get the headache.

What is your preferred migraine forum, BTW? This is one of the highest quality boards ever, IMO.

Migraine forum? I haven't even looked for one of those (why don't we have a hand slapping head smiley?) I guess feel free to recommend any good ones of those you know of, if you please. I started the topamax the same day I went dairy free, and they are trying to titrate me from 25 mg to 100, adding 25mg each week. I did OK with 25, just said farewell to all the soda, but the first 2 days at 50, I was a mess, I had a bit of a reaction getting used to it and had brain fog and panic attacks, so the neuro's office had me split the dose and take half AM and half PM, which really helps. Unfortunately, I am almost at the point where I need to go to 75, and I'm scared to do it after last week's reaction. I do think I am staying at 50 for an extra day, simply because I need to be OK in my Thursday classes, but if push comes to shove, I'll just miss the Friday lab, it's no chemicals this week and the professor would let me play with the models in his office with a note from the neuro. Usually the migraines themselves just make me distracted and short tempered, but not stupid. Frova makes me a space cadet, but it gets rid of the migraine, so it's worth it. Between the Dairy Free and the Topamax I seem to be doing so much better migraine wise that I'm hoping to avoid the frova, and hopefully I'm worrying for nothing about the next dosage increase. I grabbed a pint of the 'Purely Decadent' Yesterday, but my Hy-Vee only had the soy, not the coconut. I have them working on getting the coconut ice cream and the Vegan Gourmet Cheese. Their Health Market person is the nicest lady ever! She already knew me from dh's celiac's, asked how he was doing, and got an earful about me instead of him. If any of you out there have they Hy-Vee's in your area's please get to know your Health Market people, they *will* take care of you!

[RollingAlong]

Here are several, I

[mindwiped]

Thank you for the forum links, they've been quite helpful! I've been migraine free for nearly 2 whole weeks I'm no longer a dopamax zombie and I feel really good for the first time since Christmas. This is Great!!! I have only been to the first two forums, but they were quite enough info, as they've got me pushing dh into going back to the pcp to get into my neuro (I've been thinking he's been using the rescue meds way too much, but I haven't felt well enough to begin the doctor battle with him) Having other migrainers telling him he's using too many meds, both OTC and RX is really helping build my case for me.

[RollingAlong]

That's fabulous - 2 good weeks and 2 forums that you like the tone of.

I didn't realize you were both migraneurs! yikes! Those rescue meds are expensive and kind of scary, it definitely pays to keep an eye on them. I've only been in rebound once and I will Never Do That Again.

I'm very glad those links were handy and now they're here if some one else should need them.

I search for topics and read older posts fairly often.

[mindwiped]

I should have known better than to brag, I jinxed myself. Two doses of Frova later.... ick. Yes, we're just a happy household of dual migraine fun, but at least we both have sympathy for all of each other's special needs. I totally get his ice cold, roll down the car windows in Jan to freeze his migraine away, and he completely understands my don't bring ANYTHING scented, not even toothpaste breath near me, or you're going to take care of 'the bowl.' I understood his gluten-free life, but now that I'm df, I'm beginning to understand the withdrawal cravings a little better. I'm gluten lite, but if I'm eating outside the house, or a containerized gluten, that won't contaminate (cup o soup) I'm not gluten-free. Now that I have to be the one picking apart the menu for me, not just him, or worse, picking it apart for us to share, especially at a restaurant (now I need a little screaming smiley), I realize how much tougher our lives just got. But then I look at my waist, in two weeks df, I've lost about 5-8 inches in belly bloat, along with 7 pounds of weight from the Topamax/df diet. When I challenged the df diet, the next day all the pants that were so nicely loose, were all back to the comfortably tight again, and I don't need anyone to hit me with a stupid stick to make me realize that that's the dairy, gassing me up like a balloon.

OK, I need to stop whining/ranting, or I'm going to open a bottle of wine and have a pity party. And I don't need that! As for the rescue meds, yes, they're not cheap at all, which is why I'm trying to stick with the Topamax, but I'm not sure it's preventing any, and the brain fog and the tingling are really getting to me. I see the neuro again next week, and it's going to be a subject of discussion. Thank goodness that dh's employed and has decent medical, and they do OK with Rx coverage, or we'd be in trouble.