I Really Really Need Your Dietary Suggestion And Help

I’m in desperate need for some help with food suggestion. Before I get to the nature of this help, some backstory.

On Tuesday, I developed a rash on my chest. By the next morning, it had spread to my torso, back, and arms. At first, I didn’t think too much about it because living with lupus means that I can get rashes when I have a cold. I’ve had a cold for about two weeks, now. There is a specific name for the type of rash to which I’m referring, but it is currently alluding me.

By Friday, it was only getting worse. Normally, the other rash that doesn’t concern me, disappears after 24-48 hours.

So, I finally went to a doctor where I learned the following: The cold caused my lupus to reach a tipping point which caused my allergies to go into hyper-drive. My immune system is so stressed, that all it took was a “simple cold” to cause a systemic allergic reaction. I also learned that I’m not lactose intolerant, but I’m actually allergic to dairy. Those couple of teaspoons of milk, that I thought were safe in my coffee and tea, have been slowly poisoning me. When I got the cold, my system simply couldn’t deal with it anymore. If I had waited any longer to get treatment, the next phase could have been heart problems and anaphylaxis.

That was scary to hear. I’ve had anaphylaxis to eggs and bee stings. Not something I ever want to happen again. Had I been properly diagnosed with a dairy allergy and not simply lactose intolerant–they are two very different things–this current health crisis may have been avoidable. I say “may” because I’m also allergic to dust, pollen, and many environment things. So, my body is always being bombarded with allergens, ones that I cannot avoid, and it may have been only a matter of time before a “simple cold” triggered a potentially life-threatening reaction.

That is the TL;DR version, anyway. Hopefully, it’s enough information for you to understand the seriousness of it and why I really need your help.

Something that I learned that may be important information for others who think they are simply lactose intolerant:

  1. If you are lactose intolerant, it takes a minimum of two hours after having dairy for that gas and pain to become present.
  2. If you are feeling symptoms after 20-30 minutes–such as the case with me–that means it is an allergy, and you should probably discuss it with your physician.

I’m not a doctor, so I can’t give you medical advice. I’m just telling what the doctor told me about the times of reaction for the two conditions.

So, this means I now have to eliminate dairy and all products that contain casein from my diet, on top of the already long list of foods I have to avoid because of allergies, lupus, and antiphospholipid syndrome. And it means that most of my favourite foods are now complete no-goes, instead of being able to enjoy them in moderation or with some lactaid.

As a result, I need a good list of alternatives and a list of recipes that are considered safe. In order to get your help, below is a list of foods that I cannot have, followed by a list of foods that I can only eat in moderation.

Foods That Must Be Avoided

  • All soy products
  • All dairy and foods containing casein
    • Dairy Products to Avoid

      • Butter and butter fat
      • Cheese, including cottage cheese and cheese sauces
      • Cream, including sour cream
      • Custard
      • Milk, including buttermilk, powdered milk, and evaporated milk
      • Yogurt
      • Ice cream
      • Pudding

      Foods With Milk in Them

      These foods often contain cow’s milk protein. Check their labels before buying. If you’re eating out, ask if milk was used to make them.

      • Au gratin dishes and white sauces
      • Baked goods — bread, cookies, crackers, cakes
      • Cake mix
      • Cereals
      • Chewing gum
      • Chocolate and cream candy
      • Coffee creamers
      • Creamed or scalloped foods
      • Donuts
      • Malted milk
      • Margarine
      • Mashed potatoes
      • Meats — canned and processed, including cold cuts and deli meats
      • Nougat, found in some candy
      • Salad dressings
      • Sherbet

      Ingredients With Milk

      If you see these listed on a label, the food has milk proteins in it:

      • Artificial butter or cheese flavor
      • Casein or caseinates
      • Curd
      • Ghee
      • Hydrolysates
      • Lactalbumin, lactalbumin phosphate
      • Lactose, lactoglobulin, lactoferrin, lactulose
      • Rennet
      • Whey or whey products
  • Alfalfa sprouts and supplements that contain alfalfa
  • Echinacea
  • Eggs
  • Citrus
  • Honey

Foods That I Can Only Have In Moderation Because They Are High in Vitamin K

  • Garlic
  • Kale
  • Spinach
  • Mustard Greens
  • Collard Greens
  • Beet Greens
  • Swiss Chard
  • Turnip Greens
  • Parsley
  • Broccoli
  • Brussels Sprouts
  • Romaine Lettuce
  • Asparagus
  • Basil
  • Cabbage
  • Bok Choy
  • Celery
  • Kiwifruit
  • Leeks
  • Cilantro
  • Sage
  • Green Beans
  • Cauliflower
  • Cucumber
  • Tomatoes
  • Oregano
  • Black Pepper
  • Green Peas
  • Blueberries
  • Prunes
  • Grapes
  • Carrots
  • Summer Squash
  • Cloves
  • Chili Peppers
  • Avocado
  • Raspberries
  • Winter Squash
  • Pear
  • Cranberries
  • Miso
  • Bell Peppers
  • Plum
  • Cantaloupe
  • Eggplant

So, that means, I can’t really buy a vegan cookbook and just add meat because most vegan recipes I’ve read would mess around with my blood clotting disorder, because of the vitamin K, and put my lupus in overdrive, because of the soy.

For me, right now, I’m totally mourning the ability to eat milk chocolate, cheeseburgers, spaghetti with parmesan cheese every now and then, lasagna, borscht with cheese, poutine, hot chocolate that tastes like proper hot chocolate, and the list goes on.

It is also helpful to know that I live in Canada, so be aware of that when recommending any brand. I also live in a city that has a very poor selection of food for people with allergies who do not have celiac disease–if I had a wheat allergy, this would be easy. So, buying pre-packaged cookies that are dairy-free is not an option. Coconut milk ice cream doesn’t exist in my city.

I’m at my wits end and thinking about all the things I can no longer eat, even if it’s only once in a blue moon, is making me feel like I’m starving.

So, all your tasty food and recipe suggestions that are free of the first list, and have very small amounts of the second list are greatly appreciated! Especially recipes for baked-goods that don’t require animal milk, eggs, soy milk, butter, or margarine.

PS: Please share this post on all your social places. I could really use the signal boost, and it will help save my life.

20 Responses to I Really Really Need Your Dietary Suggestion And Help

  1. Rice and Curry are favorites of mine. Not sure where coconut milk sits on the list. There are several kinds of Thai curries which are easily modified to accommodate preferences and diets. (And still be delicious since most of the flavor is in the curry sauce.)

  2. I was going to suggest getting Indian food recipe books… looks like beans are ok? Lentils, mung beans, potatoes, cilantro, digestive enzymes(papaya chlorophyll pineapple and coconut), chick pea flour for flat breads etc… good luck… my family has a tough time with the list of sensitivity foods… very similar to yours with a few less here and a few more there. I’m sorry you are going thru this stuff. It’s a bummer. Good luck!

  3. Yes, you may have to make more things yourself. While not as extensive as your list, my son is allergic to: wheat, soy, peanut, dairy, egg, avocado and banana. He just outgrew his corn allergy!! We make a lot from scratch, and it took a while to get used to. When we found out about kiddo’s allergies he was 7 months old and nursing, so I dropped most of those foods cold turkey. I know how you feel about thinking your starving. It does get better as you find more options. 🙂
    Make a list of all the things you CAN eat, think positively. Pick up some allergy cookbooks. There are a bunch that do the too 8 allergens, and you can just sub back what you can have, like wheat.
    Some of my favorites are:
    Sophie safe cooking by Emily Hendrix
    The Allergen-free baker’s handbook by Cybele Pascal
    and Learning to bake allergen-free by Colette Martin.
    I will research where to find chocolate for you. 🙂

  4. There is a tonne of overlap with your list and the one we live with (which is about a 10 month old phenomenon). Earth Balance is vegan marg/butter, and I buy it at Save On. The Canadian packaging says contains Soy, the one I bought in the US does not, but perhaps it’s just a labeling thing.
    Ground chia with some water works as an egg replacer in a lot of baking, but makes things kind of “tough.” I keep some ground in the freezer. I think it’s 1 Tbsp/egg, plus about 2 T water, but I don’t remember. It doesn’t work for everything, but does for lots.
    The Almond milk in the fake-milk cold section is thicker than the shelf-stable kind and can be used to replace milk in most cases. I like the taste of hemp milk but found it pricey. Rice dream is like whitish water, I don’t care for Ryza either. I usually use soy for baking, but the thick almond milk is good too. (I usually only have the shelf stable stuff though).
    I’m told that ground flax works for replacing eggs, too. When eggy-ness is required, I use soft tofu + chia, so I guess that’s out for you.
    Google nut-cheese. I don’t think it’s like cheese, but maybe?
    Store bought coconut ice cream sucks anyway. With an ice cream maker, you can make coconut ice cream that almost tastes like real stuff. One can full fat coconut milk, about 2 bananas, a few chopped dates, all in a food processor + then in the ice cream maker. I add pecans and vegan caramel sauce later.
    I’ve heard that oreos are vegan.
    A friend recently ordered some non-dairy “milk chocolate” made with coconut milk, but I haven’t heard if it’s any good yet or not.
    Watch processed meats like salami. An astounding number have milk products in them.
    Coconut oil makes a good butter replacement most of the time, but it is expensive. It’s trendy enough you should be able to find it locally.
    We eat a lot of tortillas now, because basically everything in the bakery section is off-limits (yeast intolerance, too.)
    I will come back with more ideas of what to actually eat later, but this is a start.

  5. you asked for a pancake recipe – here’s a vegan modification of my standard recipe. the good news is, a quick search shows that most grains and carb-bearing seeds appear to be low in Vitamin K, so I would opt for the most nutritious ones – teff, amaranth, quinoa, and buckwheat are all good ones.

    You can mix up larger quantities of the dry ingredients to make up a mix where you measure out about 1 1/4 cups of the mix for each individual batch of pancakes

    1/4 cup tapioca starch
    1/3 cup potato starch
    2/3 cup amaranth flour or buckwheat flour, or teff flour
    1 T psyllium husks or 1 tsp psyllium husk powder (you should find these at your health food store, or anywhere that carries Indian foodstuffs). you could also sub in 1 tsp xanthan gum or 1 tsp guar gum.
    1 T granulated sugar or other sweetener
    1/2 tsp sea salt
    3/4 tsp baking powder
    1/4 tsp baking soda
    1/4 cup mashed banana or applesauce, OR 1 T ground flax whisked with 1/4 cup hot water, let stand 10 mins.
    7/8 cup non-dairy milk mixed with 1 T vinegar (I’ve used coconut milk, almond milk, cashew milk, and hemp milk. up to 2 T more non-dairy milk if needed.
    2 T vegetable oil

  6. For breakfast I enjoy smoothies with banana and almond milk with either peanut butter or half an avocado thrown in.

    Recipes that pair lean protein with rice or beans with some vegetables look like they might fit your needs.

    The paleo recipes are all dairy free.

    (I love the blog Skinny Taste for recipes that are healthy and easy to cook. I’ve never tried one from there that turned out badly.)

    This is my favorite vegan brownie recipe. It has some blueberries in it, but is surprising but delicious. I use almond milk instead of soy and it works fine.

  7. Hanna Kroeger’s Allergy Baking Recipes is my go to whenever I have a dietary change. It’s a little book with info about how to substitute, not just recipes. I have a recipe for her egg replacers & pancakes on my blog.

    Also, for recipes, I find oatmeal blended with water to be a good milk substitute.

    Good luck

  8. I see you lamenting the loss of mashed potatoes. They’re pretty easy to make with fake-milks. You probably want to use a bit of coconut oil in them too, I use earth balance.
    Foods: Tortiere (I actually prefer making coconut oil pastry to regular, but you should be able to eat the vegetable shortening crisco crusts, we can) add lentils for more nutrients. Meat pies made with a mashed potato crust instead of pastry.
    Poppy seed dressing has no egg or dairy in it (it’s an emulsion, apparently). The orange label one that used to be in a round glass jar, but is now in a curved plastic one, usually in the produce section.
    Sweet potato stew, sweet potato anything, really. Mango salsa + chips. Check out Paleo AIP food blogs, I think the subset matches with a lot of things. It’s mostly meat and a very limited number of fruits/veggies/spices.
    Mushrooms galore – mushroom pie, portabello burgers, crab stuffed (toffuti is fake cream cheese… it doesn’t taste like cream cheese, but can be used in things. It might have soy, I don’t remember.) You can also get veganese (mayo), there’s several brands, I’m not sure about soy in them.
    Nuts and seeds are your friend. You can make things like pumpkin seed “pesto” which is good on dark meats, like lamb.
    – hot pots
    – lentil soup
    – vegan biscuits

  9. As a person with a severe dairy allergy, I empathize. Almost everything processed in a store uses some dairy. I have to read labels very carefully.

    I don’t have trouble when I am in control of my food. It is only when I travel or am at group functions where I cannot control what food is there that I will have trouble. I stick to as many raw ingredients as possible.

  10. We love this black bean burger recipe (you’ll need to skip the garlic and pepper): http://vegetarian.about.com/od/maindishentreerecipes/r/BlackBeanBurger.htm
    You can substitute some of the wheat flour for chick pea flour (chana dal) if you can find it.

    For parmesan on your pasta, you can substitute nutritional yeast. Add a bit of ground cashew for a richer taste.

    Additionally, some margarines are dairy free (though not many). The cheapest of these, and easiest to find, is Fleischmann’s original: http://www.fleischmanns.com/our-spreads.jsp

    There’s a homemade coffee creamer recipe on this page that might work for you too: http://www.choosingraw.com/homemade-vegan-coffee-creamer/

    I may also have a brownie recipe that will be safe too – I’ll have to check it out.

  11. Liz Neff I REALLY enjoy almond milk – unsweetened, no vanilla added. I use it for most everything but have also had hemp milk and found it good too. So sorry – I don’t have a non soy suggestion for butter but have found some home made ‘cheese’ recipes online that do not contain soy – they are actually bean based. This link is about the kind you find in stores: http://www.organicauthority.com/…/what-is-vegan-cheese… and appears quite thorough. Oh! Earth Balance DOES have a soy free ‘butter’. I’d urge you to google items individually – nowdays if you live in or near a good sized city, you should be able to find most if not all of what you need. Good luck!

  12. so sorry to hear about all this, Jules! I am looking over your lists and giving it some thought. there are a couple of things I’ve added to my diet that have helped me – the big ones are bulletproof coffee for healthy fats, and green smoothies. our version of bulletproof coffee has ghee or butter in it but you could skip that and just use coconut oil, and I use Green and Black brand 85% dark chocolate in it and stevia. That’s a good dose of medium chain triglycerides for energy. The green smoothies might be problematic since a lot of the ingredients are on your moderation list. I’ll think on that some more. Basically, we throw whatever is coming in from our garden into the blender with almond milk and a couple of pitted dates. That includes things like arugula and purslane… I’m not sure if all the greens are on your list or their might be some. We are mostly wheat free — the kids sometimes get corn pasta, and we ear canned sardines, tuna, and salmon a couple of times a week. We use mayo but there might be alternatives there, like cider vinegar, to spice it up. Other proteins we eat include ground elk and bison. we make chili and bean and rice dishes. The lack of tomatoes could be a little tricky. We feed the kids corn pasta and often a cold seafood salad type thing can turn into a dinner by tossing it with pasta. If you can manage lentils that’s a great protein source. I think the suggestions to investigate some Indian foods is a good one — Indian regional cooking has a huge variety of dishes. They don’t all use dairy. We have a ton of cookbooks — I’ll tag Grace, and maybe she’ll have some ideas…

    • Don’t worry about the green smoothy. I have a feeling that would go over my daily intake of veggies cos of the Vitamin K.

      As a general outline for the “moderation”: Top of the list items: One serving per day or three servings a day of the last 2/3 of the list. So, I can do spaghetti sauce (as example) but that’s my total veggies for the day.

      As for canned fish, I avoid it and only do fresh fish because canned fish tends to have higher levels of mercury, which (while levels are okay for normal immune systems) are bad for lupus.

      There is a local non-dairy chocolate resource very near to me (link in the comments here, somewhere). So, I think I’m good there!

      The biggest things I’m now looking for are regular wheat baking recipes that are free of egg whites and dairy. Cutting dairy all casein from my diet caused me to lose 5 lbs in 3 days. I need to keep the carbs found in wheat and there is only so much rice I can eat before I begin to hate eating more than I already do because of my limitations.

  13. I just found this recipe and haven’t tried it, but looks tasty. Sounds like you can find a good dairy-free chocolate, so it should be good.

    What I ate a lot of when I was a food restrictions, and might be appropriate for you (sorry if other people have already told you these, I didn’t read all the comments):
    – corn tortilla chips and guacamole (or just mashed avocados)
    – corn tortillas for tacos with meat or fish, beans, my own mix of taco spices (just look at the ingredients on a premade mix and make your own based on that), rice flavored with lime
    – Lots of meat… this helped me feel full!
    – Homemade soup: start with chicken broth and add whatever you can eat, chicken, rice, corn, beans, noodles if you can find some safe ones.
    – Yams. I love yams! Not sure about their vitamin K content though.
    – In recipes you can also replace butter with avocado or banana.
    – This cookie recipe… no eggs, no dairy! Very good, but best same day.
    – You can make chicken salad by replacing mayo with avocado.
    – And when I was in the mood for something not healthy, I had tater tots (or fries, I suppose, but just the brands you trust to use only potatoes and not all kinds of additives like McDonalds).
    – I switched to having oatmeal for breakfast, and/or as a snack throughout the day.
    – These recipes might need some edits (remove/limit green chilis, jalapenos, canned tomatoes), but should be decent anyway:
    Let me know if the links don’t work for those 3, can’t remember if I removed public access.
    – Oh, and I have an awesome recipe for a spicy asian noodle soup. I just eyeball the ingredients:
    Chicken (cut in cubes, about 1 lbs)
    Cumin, coriander, tumeric (about 1 teaspoon of each)
    Garlic, ginger (about 1 tablespoon of each – fresh or dry both work)
    Jalapenos (if you can have them, cayenne pepper works too if you can have that instead)
    Cook in pan with olive oil until chicken is cooked.
    Add chicken broth (2 cans) and a package of rice stick noodles, bring to a boil. (Add more broth or less noodles for a soupier soup. I make mine so there’s barely any broth in the end.)
    Reduce heat and simmer for 5 minutes.
    Squeeze in lemon juice before serving.

    I hope any of this helps!

    • They do help, a lot! Thanks, Ariane!

      Also, I’ve requested access to those recipes. I don’t know if you still want to make them public for other people’s consumption. But, you should be receiving three requests from me 🙂

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