Vitamin Deficiencies and Medications

I thought it might be good to give an update as to the supplements and medications I take to keep my lupus under control. I started a plant based diet in July of 2009, and was strictly plant based without any waffling until about a month ago when I was flaring and desperate to figure out if food was causing any issues. When lupus flares, I tend to panic and reach for any reason possible. I doubt I will be doing that in the future as nibbling off a family member's plate led to extreme discomfort and didn't help me at all. I have to be honest: I was relieved. I'd like to continue embracing veganism.

Albert, a pig who had a sad start and is enjoying life at Pigs Peace haven
Photo by Pigs Peace Sanctuary

My family has a pretty healthy diet by popular standards, but they are still very meat and potatoes. My gravitation towards a vegan diet was only comfortable when I was doing it for health reasons. As I started defining what my thoughts and beliefs were on the subject, I could sense they were becoming more and more uncomfortable. I was on a raw vegan diet for a time and then went to an extremely restricted diet over the past several months. I started trying the phase 1 diet in April and then followed that strictly (no fruit, mushrooms, cashews, grains) for several months. I noticed I started developing some odd symptoms - fatigue, my hair stopped growing, I dropped weight suddenly no matter what I was eating, etc. I assumed this was from malnutrition. I started eating more variety and it just made me sicker. I thought I had a candida issue, so I thought perhaps cooked veggies and a little *gasp* meat once a week may get me through this, but that just made things horribly worse. Then I started trying cooked grains and fruit. Anything new was giving me horrible upper g.i. pain, nausea, and diarrhea.

Me starting to get sick. Note skin is not clear, hair is oily, eye rims are red, color is bad.

For comparison - when I first started raw and was feeling well. Good skin tone.

My doctor figured out that my body was basically becoming "allergic" to anything I hadn't had consistent exposure to, and I was also becoming "allergic" to things I ate too often. Coconut is now off the table for some time, which is a serious bummer. I was also developing asthma for the first time in 20 years, and I started developing rashes. I also started reacting to my wedding ring. It felt like the area was burning and I developed a rash. He started me on Ketotifen. Ketotifen is a mast cell stabilizer and also an anti-histamine. I started out with one dose in the evening and gradually worked up to 3 doses per day. After about a week, I noticed vast improvement in digestion, comfort, and I could eat many vegan cooked items. It has continued to help, but I still do best on a high raw diet. Too much cooked can lead to discomfort from gas, but it's a huge improvement. The doctor believes that the flare up was a lupus flare, and not necessarily mastocytosis. We also have not done sufficient testing to determine whether that was the cause.

Yay for cooked food! Vegan, gluten free Maple Pecan Shortbread...Yum

When I thought my symptoms were being caused by malnutrition, I had a vitamin panel done. I was pleasantly surprised how little I was deficient in. I was deficient in B6, Asparagine (an amino acid) and my antioxidant function is not great. In each of these areas I was minimally deficient and the supplement repletion recommendations were so low, I couldn't find supplements in that dosage. I could have probably regained B6 and Asparagine by altering my diet, but I elected to start supplementing for B6 and supplement antioxidant function with vitamin E, N-Acetylcysteine (Glutathione), Selenium, vitamin D3, alpha-lipoic acid, and to continue with B12, vitamin C, digestive enzymes, probiotics, and MSM.

Finding vegan supplements can be a little difficult. Capsules are often made from animal byproducts, and I also usually stick to pharmacy grade that are independently tested. My B12 injections - I'm really not sure about how they are sourced. I recently ran out, so I plan on calling the pharmacy. If they are not vegan, I'll probably look into vegan sources because my levels are so high right now. Vitamin D was also very difficult for me to find because most vegan sources have a lot of food ingredients that I am allergic to (blueberries, cranberries, soy, etc.). I finally hit the jackpot at rawvegansource.com - they have a local store. I don't see it on their website, but if you call in, they can help. Vitamin C was another issue because it's usually sourced from corn. I found NOW brand Tru-C vegan capsules, which I pair with MSM for optimum function.

Vitamin E was another tricky one for me because it's often sourced from soy. I am very allergic to soy! Rawvegansource.com had a rice based formula that I put in my smoothies.

Brown Rice based vitamin E supplement from rawvegansource.com

All in all, it seems like a lot of powders and pills, but I'm hoping the digestive enzymes will help me start to absorb things on my own. Testing for nutritional deficiencies on ANY diet is a good idea. I'm sure I was far more deficient several years ago when I started a whole food, restricted non-plant based diet. Each person responds differently to diet changes. Supposedly, according to my blood type I should not be vegan, but it is completely possible to thrive on a plant-based diet on any blood type. I also thought it would be impossible with an allergy to soy, but it is completely possible! It all depends on what you eat - fats, carbohydrates, and other nutrients should be balanced according to your personal needs, not what works for someone else. I know vegans who thrive on primarily fruit, whereas I do poorly on high fruit and need a solid amount of fats in my diet.

One last thought. Without low dose naltrexone, I would be in a world of hurt. It has helped me avoid prednisone, methotrexate, anti-malarials, and all of the side-effects and organ damage that can come with them. I think it is so important for people to educate themselves and not give up when facing a major health issue. Follow your doctor's advice, but don't be afraid to question them, educate yourself, and suggest alternative treatments for them to consider. I hated prednisone! The side effects were hard on me and my husband (I got REALLY irritable). Now I have better quality of life, even with the bumps I hit along the way.

Well, I've rambled on enough. Time to fix breakfast and spend time with friends and family.

Back from Travel

Traveling with severe food allergies is difficult, especially right after a lupus flare up that isn't 100% under control. I think I did really well in the food department, although next time I hope to have access to a rental car (more fresh foods). The long hours were wearing as was trudging around an airport and socializing with a ton of people. I am a bit of an introvert - I loved seeing old friends and making some new acquaintances, but I was happy to curl up with a book after dinner a couple hours of socializing.

The weather wasn't the greatest in Chicago, but that didn't matter much because most of the time was spent in conference rooms. By day four, my joints were hurting and my stomach bloated up like crazy, which wasn't comfortable on the plane ride home.

Here is a link to how I coped with traveling with food allergies.

I missed Lance and Annie. Annie was really happy to see me and wriggled all over my lap on the way home. We usually keep her in a kennel in the car for safety reasons, but this was an exception. I guess she also got to sleep on the bed while I was gone. Not a good thing for Lance's allergies, but Annie seems to have adjusted.

Annie looking cute while waiting for a ball

Her fav. pastime is fetch now

One good thing about being out of town was realizing how much I love fresh foods. Baked goods have been a big focus lately, but I really wish to maintain a high raw diet.

Lance cleaned out the fridge! It's time to go grocery shopping. He gets to drive though...I'm so tired I can't see straight.

False Start, Tomatoes, and Comfort Food

Today was almost my first day back at work. I obtained my Medical Release to Work document, faxed it to two locations, but had to wait for corporate processing before I could officially start, so I got to turn around and go back home. I can't say I was terribly depressed about it, but I was a little bummed because I was ready to start working. I stopped by Whole Foods on the way home to pick up some required ingredients for jambalaya (vegan ingredients) for Lance and a couple items we needed. We go through peanut butter like nobody's business - mostly because Annie NEEDS her kongs to be stuffed with lots of peanut butter. She was sleeping on the couch when I got home and happy to have someone in the house, although she spent plenty of time in a different room sleeping on her new bed - the futon in the spare bedroom.

Annie: hunting for bugs

Annie: rolling on bugs

Annie: Zen Master

I made some tomato sauce from whole tomatoes and chopped up a bunch of peppers, onion, and celery and put a bunch of ingredients in the crock pot to simmer while Lance was still at work.

Tomatoes, bell peppers and a serrano chilli

8 tomatoes - maybe 2 cups of sauce

It always amazes me how much tomatoes cook down. I consistently expect to have "plenty of extra" for marinara, but usually end up pouring the entire batch into the crock pot. Canned tomatoes are so bad for people. Plastics are used to line tin cans. Because tomatoes have high acid content, they eat away at the plastic lining and BPAs enter the tomatoes. Lance is pretty good about buying tomato sauces in glass jars, but when we need a big batch of tomato sauce for a dish, I just buy a lot of tomatoes from the produce section, skin them and cook them down.

I did get to try a new technique for de-coring/de-seeding bell peppers. If you smack the flat of your hand against the top of the pepper, the stem area has a pressure perimeter that just cracks open. Then I just had to grab the stem and pull, and most of the seeds followed. Pretty slick.

No stems, no seeds...

I had some left-over vegan cream of mushroom soup (YUM) and some stir-fry with a peanut sauce for lunch. Annie and I watched The Lovely Bones, which I would recommend reading. The novel was amazing. The director did a decent job, but really tamed the content. I thought the sexuality and brutality of the book made it more raw and realistic. It's not a happy-go-lucky read, but it's very good. I wasn't sure how I felt about the concept of an "inbetween", a realm between here and heaven that people are stuck in as they resolve their feelings about life and death. I did feel the author did a very good job of showing the human side of all of the characters, even those most of us would not relate to very well. The insight into the family's coping mechanisms after the girl's death made me feel a mixture of morbid interest and discomfort.

After watching the movie, I got back to work in the kitchen and made some pumpkin bread and a butternut lentil curry. I don't go near jambalaya or anything with tomatoes or bell peppers. Like many people with lupus, I do not do well with the nightshade family. I can get away a little bit of cayenne or hot chillies, but I develop joint pain if I overdo even those. I have been craving hot soups lately and I just go with the flow. I think my joints are a little sore because of the cold weather and I am tired and have the sniffles, especially when I walk outside. I think the ketotifen is helping with my breathing, but because it's usually easier to breathe, I notice when my asthma is kicking up more now. When things come on slowly and other problems are more prevalent, it's amazing what I fail to notice until it improves.

butternut squash lentil curry

Making better food choices

Food is my weakness. I associate foods with fond memories, and am an emotional eater. I've struggled with weight problems in the past, primarily because of poor food choices. As my health deteriorated, my food allergies and intolerances came to the forefront and forced me to make some really healthy changes in my diet. Eventually it led me to choosing a completely plant-based diet and a new way of life. I still struggle with my views on veganism and how much of a role it plays in my life. Spiritually, I am not vegan, but many of my ethics/opinions are still in line with veganism. I abhor how animals are treated in the "food industry" and clothing industry. My big blocks to completely embracing veganism have to do with my dogs and health. I can't find a vitamin D supplement that I'm not allergic to that is vegan. All of the vegan D supplements out there have corn, blueberries, or something else I am allergic to (if someone knows of brand without soy, corn, blueberries, strawberries, or gluten, please let me know).

I have a food blog and absolutely love coming up with new recipes. Experienced cooks say it's impossible to have vegan gluten free baked goods without questionable added ingredients, and I just refuse to believe I have to use ingredients like xantham, carageenan, and guar gum, let alone dairy or eggs. The drawback has been how far I've allowed myself to stray from a raw vegan diet. At first I was really good and would blind bake everything, letting my husband tell me how things turned out. Over time, that behavior evolved into eating my share of the baked goods. My skin is starting to show the signs of gastrointestinal abuse from the sugars and starches.

Mmm..gluten free vegan choclate banana tease bread

Yesterday I had some raw vegan snacks and breakfast, and this morning I started
off on the right foot with a green smoothie. Usually I dread them, but I was actually craving greens this morning and decided to listen to my body. I think the sweets in my system have just been too much, even though my energy levels are still good. My dogs actually really enjoy green smoothies. Yesterday they had kale with apple, and this morning we shared lettuce greens with banana. After the dogs have their share, I add in spirulina, maca, and probiotics for myself.

Champ and Annie, a rare quiet moment

I'm not sure what the pull towards cooked food has been for me lately. I think I just got tired of raw and needed a break. I don't seem to do well when my diet is restricted too much - it's hard to reintroduce foods and I also develop intolerances to foods I eat too much. I do like how much energy can come with a raw diet, so I'm trying to crawl back to a high raw diet. Moderation is something I struggle with on a regular basis, and it applies to all aspects of my life. I don't ease in to anything.

Despite flaring, I still feel that the LDN helps. The ketotifen has also been helping and I am up to 3 times a day. I hate taking medications at all, but if it helps me function, I'm willing to do it. I have enjoyed more energy the past couple of days and have been painting again. I'm looking forward to going back to work.

Doctor Visit, Vet Visit, and Food Stat

I went to see the doctor today and get a nutrition IV. I am doing so much better than last week and have more energy, so I asked for a release form to go back to work on Monday. I'm going a little stir crazy at home, and may try to organize a little more around here. We still have a couple boxes that were never unpacked, and it's a good time to go through my stuff to see what needs to be donated. And there's always going through books to turn in for credit for more cookbooks and art books :D Yay.

I talked to the doctor a bit and he didn't want to label the flare up it mastocytosis because it can be very violent and deadly. He'd rather stick with "twitchy" mast cells, and I have lupus so weird s#$@ is bound to happen. I've been rather fixated with labels lately and wanted to know what was wrong, but I'm content with knowing that the ketotifen is helping and I feel better. It's nice to be able to drive again!

Champ went to the vet today. There are foxtails at Magnuson off-leash park, and apparently the burs can burrow through skin. Champ had a cyst I found last week and I didn't think much of it, but after going to the park and seeing signs up warning others after an expensive canine surgery, I thought it best to go in. The vet wasn't sure if it was just a cyst, so I have to poke some scissor type things in the wound to see if it is getting shallower. Fun for Champ! Poor boy.

image of a foxtail (variety of grass seeds)

After we got home, I heard an absolutely frightening food statistic on Unwrapped. Under 1/3 of Americans make their meals from scratch! Holy crap! How is that even possible? I guess I've been making all of my meals from whole foods since...2004. In college I definitely would have fallen under the 2/3, but growing up, my family always had a big dinner with meat, some kind of starch, vegetables, and additional salad. Meat is not on the menu for me anymore, but I guess by comparison we were doing pretty darn well. Now I guess at least part of the meal is dumped out of a jar, can, bag, or box. Yuck!

I understand that pre-made food is convenient, but throwing a meal in the crock pot, or putting together a salad for lunch isn't that time consuming. I am lucky that I really enjoy cooking and changing ingredients around, so I really don't mind it. That isn't to say that on days when I'm really tired and forgot to plan ahead I don't wish there was some health food drive through I could stop by. On those days I'm a little later to work. I guess I can't judge too harshly because I probably would cave to convenience on occasion if I could, but 2/3? Really? Do people not know how to cook anymore? I'd love to hear from others because this is blowing my mind. My husband wasn't surprised because before we got married it was mac n' cheese, pizza, and his "from scratch" was cooked meat and veggies in a tortilla wrap (not scratch).

I spoke too soon....

I have angered the stomach gods with my overly optimistic and simplistic view of how my stomach was receiving cooked food and fruit. This resulted in subsequent praying to the porcelain gods.

I tend to do this thing where if I'm feeling a little better, I'm cured. Denial works in many ways, and minimalism is my favorite. Just this morning, my husband was slightly annoyed that he had to remind me how sick I was just last week. My answer? "But I feel better right-now-this-minute!"

I've had the first of two ketotifen doses of the night, so I better get offline before I say something REALLY silly.

Feeling better and pumpkins

The past week has been spent primarily sleeping, which was really nice. I've spent the week on the couch surrounded by cook books, cooking magazines, and watching the food network. Annie has been pretty good, although usually insists laying on me while I'm curled up on the couch. Champ has spent the week here, which has been good because my nephew has a new found interest in him, and Champ doesn't particularly care for the attention of an 18-month-old toddler that doesn't always know what "gentle!!!" means.

On Wednesday, I finally felt like cooking dinner, which was a good thing. Most other meals are thrown in a blender or just rough chopped and eaten raw. Lance is awesome, but food isn't his forte unless it's stuffed in a wrap or sandwich. I know I'm sick when I don't care to be in the kitchen.

A rare moment...Annie NOT trying to crawl on my head

The ketotifen made me really, really tired as predicted. I slept about 20 hours the day after my first dose, and that sleep time gradually reduced each day. I'm up to 2 doses and finally feeling OK on 12 hours of sleep. I didn't realize that I was having asthma problems until it became apparent that the medication was making it much, much easier to breathe. I was taking shallow breaths and I wheeze a bit, especially in the morning after getting out of bed. My allergy to mold and dust was probably contributing to a mast cell break down of sorts. The medication helps tremendously with my food issues. I've been able to eat fruit and cooked grains without pain.

My doctor isn't sure why my mast cells went bonkers or I started developing allergies to all foods I wasn't "desensitized" to or exposed to on a daily basis. The medication I am on isn't a short term prescription, and I continue to push what I am eating on a daily basis. I try not to overdo things. I'm just happy I can have pears, bananas, and raspberries again. I'm waiting on more tests to see if I still have bacterial issues in my intestines - I was on a lot of antibiotics and nystatin a while back and things never really calmed down. I'm hoping I don't have a candida issue still because then I'll have to go on a restricted diet again in addition to the medication or even take Diflucan. I'm still on the Adya Clarity and my doctor is worried about trying anything else right now to get rid of the heavy metals. I guess we'll deal with the most pressing issue at a time and go from there.

I'm hoping I will be OK driving soon because Lance can't keep taking time off work and I need to get Champ to the vet and myself in for another IV treatment. I think I should be OK to go back to work after next week and am hoping they are OK with weekly IV treatments. I left at a really stressful/busy time, so I am hoping to get back soon. I guess I'll worry about that later.

Champ, insisting he doesn't need to go to the vet

This weekend I knew I was feeling better because I wanted to bake again. Lance helped me with a pumpkin pie along side our feast with my family. It was fun to have my family over, and my mom helped a lot in the kitchen, especially the clean up afterwards. That was a good thing - I had to take a dose of the ketotifen and I was wiped out and staring at a blank space on the table by the end of the night. I'm sure I was quite the conversationalist. This morning I used some of the leftovers to make some gluten free vegan donuts. Lance has been happy I'm feeling better - especially because of the food. I think he's also very glad I'm not sneaking off in the night to writhe on the bathroom floor.

Mmm...vegan donuts with powdered sugar

I finally decided to go 100% vegan with my gluten free food blog. I am ethically vegan, but definitely not to the extent or for the same reasons as many. Plus my dogs are not vegan, and my husband is just starting to enjoy some vegan meals (he will never go vegan, and that's fine), so I suppose by association you can't label me vegan either. I am one of those people who started for health reasons, and continued because of research - which probably makes me more prone to waffling on the subject. I admire people who are dead set in their convictions, but the world is not black and white anymore to me. I just can't view a fish as my equal and don't view consuming them as morally repugnant. Now genetically modifying them and feeding them soy and corn - that's disgusting to me.

Sleepy...

Well, I finally allowed myself to take medical leave. I have to get to a certain level of illness before I feel justified. Apparently, that meant alternating nights on the bathroom floor.

I went to see my doctor Thursday and picked up a prescription for Ketotifen. Traditionally it was used to treat itchy eyes and asthma symptoms, but it's a mast cell stabilizer and antihistamine and he hopes it will calm the mast cells in my gastrointestinal tract. I think my doctor suspects I have systemic mastocytosis. He thinks that my body has essentially developed an allergy to the food I cut out for a while thinking I was helping a systemic candida issue. Systemic mastocytosis is very rare. The intestines, skin and lungs all have the most mast cells in our body. My small intestines are extremely painful, I have nausea, vomiting, and diarrhea, and this all happens after I try to eat a small amount of foods I'm not used to whether it be fruit or cooked vegetables and grains (not gluten, I'm just trying amaranth and a couple others). I am also becoming allergic to things that I wasn't allergic to. Tree nuts are starting to bother me and kick up asthma, which I haven't had an issue with since I was a little girl. I'm also getting tested for intestinal parasites and bacterial imbalances to check everything out.

I'm supposed to take Ketotifen up to 4 times a day, but just starting out at once a day knocked me on my backside. I think I've been sleeping 16-20 hours a day. The pharmacist and doctor warned me that was probably going to happen for the first three days. I feel a little more awake today, but really want to crawl back into bed.

This week I start some I.V. treatment and just do more tests. Hopefully I'll be better soon. I was hoping to miss work only for a couple weeks, but I'm not sure how realistic that is. I don't even feel like cooking - and that's usually my coping mechanism. This morning I did make some tasty porridge out of amaranth, hemp milk, raisins, and spices. We'll see how that settles.