I have been living with lupus for a long time, but diagnosed a few years ago. This is my path to healing. I eat a raw vegan diet, use supplements, low dose naltrexone, and other controversial and natural healing methods. I hope I can help you gain some insight into the disease and how I am choosing to battle it.
Sunday, December 20, 2009
Stress Is Bad
Times of stress tax our cells! We act like we are in fight or flight mode for a longer period than our bodies were created to sustain. Long term stress creates imbalanced cortisol levels that cause weight gain, strain on several organs, and create/worsen health problems.
As we all know, stress is unavoidable. We can only take steps to address the issue or change our lifestyle to minimize the affects of stress where we can. I would say it's time for me to look into some yoga! :)
Vegan Pumpkin or Sweet Potato Pie
Remove 1/3 of the whipped substance from the processor to use as a topping.



Saturday, December 12, 2009
Have Allergies? Hidden sources of wheat/gluten, soy, dairy, and corn
One of the most difficult things about having an intolerance or allergy are food product labels. Labels don't tell you simply if something has milk or gluten in them. Gluten, milk, corn, and soy are in a wide array of things that don't look, feel, taste, or smell like the original product. When I talk with some people who have been diagnosed for years, I am surprised to hear that they don't read labels very closely. A good friend is celiac (gluten intolerant) and didn't realize that soy sauce, ketchup, mustard, and bbq sauce usually all have gluten. Tomato paste is a pretty common carrier, and the wheat in soy sauce aids the texture. I've also spoken with people who are gluten intolerant but still eat bagels and breads because the label listing doesn't outright say "gluten." Doctors could do a better job of educating their patients after a diagnosis, but ultimately, it's our responsibility to arm ourselves with knowledge.
These lists aren't meant to overwhelm you, although I know I was overwhelmed when I realized how far reaching the common allergens are. No wonder many of us are allergic to these foods! They are loaded into so many things and we are bombarded with them daily (if not every meal). I encourage people to consider a whole food diet. A whole food diet is prep intensive, but it bypasses the processed foods that are so bad for us.
Gluten and Wheat Allergies
Gluten can be found in several grains and grain like products (1):
* wheat (a.k.a Bulgar, dinkle, spelt, durum, emmel, einkorn, fu, kamut, semolina, wheat germ, wheat berry, wheat nut)
* barley
* rye
* triticale (rye/wheat hybrid)
* Beer, ale, and most hard alcohol is derived from glutenous grains
Tricky products/derivatives are (1):
* couscous
* edible starch (often derived from wheat)
* farina
* gliadin
* gluten
* gluten peptides
* glutenin
* graham flour
* matzo, matzah, or matza
* MIR. (wheat and rye cross)
* Seitan
* wheat grass - may or may not cause a problem
Even trickier ingredients include (2):
* Binder or binding
* An ingredient with the word "Cereal"
* Filler
* Flour
* Gum base
* Hydrolyzed wheat protein
* Anything with the word "starch"
* Thickener or thickening agent
These items can be found in food product labels you find at the grocery store. When at a restaurant or bakery, it is nearly impossible to find gluten free fare - and honestly it's usually safest if you stick to home made, whole foods that are not pre-packaged. If you must eat out, be aware that wheat is often used in sausage, condiments, marinara, Alfredo, sauces (especially the basic cream or white sauces), gravy, meatloaf (as a binder), meat patties (as a binder), soy sauce, teriyaki sauce, soups (as a thickener) and of course breads, muffins, bagels, doughnuts, cakes, cookies, cupcakes, bread sticks, doughs, pot stickers, miso, wontons, noodles, crusts, and croutons. It is easy for the wait staff to not be aware or not remember that something has a small amount of wheat flour in it.
If you are gluten intolerant, Oats may or may not be suitable depending on the extent of your sensitivity. Oats are commonly used as a rotation crop with wheat. They are usually grown in adjacent fields, stored in the same storage areas, and processed using the same equipment. There are farmers who are dedicated to growing gluten free certified oats that are not grown with wheat - but some people still may react to the grain. It is important to search for certified gluten free oats and try a small amount and watch for any reaction.
Be aware that many cosmetic products contain gluten. Makeup, hairspray, lotion, toothpaste, soaps, and other personal care products often contain gluten as a binder. I've gotten stomach cramps from getting too big of a whiff of my husband's pancake batter flour or hairspray before...it really doesn't take much to set some people off!
Milk Allergies (3, 4, 5)
Milk is another favorite hidden ingredient.
Other names for milk:
* Whey (may have other words proceeding or following "whey")
* Casein
* Curds
* Lactalbilum
* Lactoferrin
* Lactoglobulin
*
* Butter
* Butter flavor/Butter flavored oils (often contains milk)
* Sour Cream
* Cream
* Cheese
* Nut or Soy Cheese (often contains casein)
* Enriched flour (gluten enriched with milk protein...double whammy)
Ingredients that likely contain milk:
* Caramel Color
* Caramel Flavor
* Chocolate (even dark chocolate has milk)
* Wax coated fruit or vegetables (apples, cucumber, etc.)
* Artificial Sweetener
* Natural Flavor
Products that likely contain milk:
* Sausages
* Ham, bacon
* Cured meats
* Baked Goods (rolls, cakes, cupcakes, bagels, doughnuts, pizza dough, crusts, cheesecake, stuffed pastries, pastries in general, bread sticks, croutons)
* Crackers, Chips
* Cheese flavored snacks
* Most salad dressings
* Marinades
* Trans Fats
Restaurants further complicate things by putting butter on many things, and once it melts on your meat, it's pretty hard to see! Be mindful that delis and restaurants don't always do a great job of cleaning their work space and tools.
Something important to consider is the fact that many disposable gloves are coated in a milk derivative. People may be allergic to the coating on latex gloves (as well as latex itself). Milk products are also a favorite of the cosmetic industry. Makeup is something I like, but I've found the gluten, dairy, and parabens found in most lines force me to make more informed (and often more expensive) purchases. I prefer vegan cosmetics that are paraben and fragrance free. Gluten and soy are often used, so it's important to find a company that openly discloses ingredients.
Soy Allergies (6,7)
Ah, soy. One of the most misunderstood and widely used foods. The history of soy is something I find quite interesting and may blog about, but I'll try to keep it short. Essentially, soy was considered strictly a rotation crop until it was discovered that fermentation made it edible. I believe that in its fermented forms (tempeh, tamari, miso), it can still be beneficial in moderation. Now it's a highly processed or non-processed component that is found in many processed and "health" foods. It contains phytochemicals that mimic hormones, and can cause health problems in its unrefined or over-refined states. If it's not treated properly, the proteins are completely useless and pass through us like they never happened.
Other names for soy:
*Tempeh
* Miso
* Tofu
* Teriyaki
* Tamari
* Edemamme
* Mono-diglyceride
* Kinako
* Kouridofu
* Natto
* Nimame
* Okara
* Soya, Soja
* Yuba
* Hydrolyzed Soy Protein
Hidden Soy Ingredients (high likelihood of being soy)
* Vegetable Oil
* Vegetable Protein
* Lecithin (may or may not cause a reaction)
* monosodium glutamate (MSG)
* hydrolyzed plant or vegetable protein
* baking mixes
* baby formula
* Thickening Agents
* Soups
* Baked Goods (Doughnuts, pastas, breads, crackers etc.)
* Natural or Artificial sweeteners or flavors
* Sauces
* Salad Dressings
* Marinades, gravvy, broths, buillion cubes, stocks
* Simulated meat products (imitation crab, bacon bits, "tofurky", etc.)
* Canned meats
* processed, cured, or prepared meats
Soy is a prolific ingredient that should not be taken lightly. It is in most all salad dressings, marinades, sauces, spreads, spice rubs, and is in some diet sodas and most beverage mixes (hot chocolate, apple cider, chai tea mixes, etc.). It is almost impossible to avoid in bakeries and restaurants, and most servers and even chefs may not know what all they are using that contains soy. I was in a restaurant the other day that tried to assure me I could have a dish because it contained tamari instead of soy. Tamari is soy. I'm glad I knew that at least :)
Corn Allergies
This is another tough allergy because corn is in so many different products in different forms listed under different names.
Other names for corn:
* Popcorn
* Corn meal
* Maize
* High Fructose Corn Syrup
* Hominy
* Grits
* Polenta
* Cornstarch
* Cornflour
Ingredients that often/usually come from corn:
* Baking Powder
* Vegetable Oil
* Confectioners Sugar
* Fructose
* Glucose
* Maltodextrin
* Invert Sugars
* Dextrin
* Artificial Flavor/Sweetner
* Natural Flavor/Sweetner
* Starches
* Thickener
* Monosodium Glutamate (MSG)
* Caramel Color
* Citric Acid
* Vanilla Extract (used to sweeten and color)
For a more extensive list of "may or may not contain corn" products, go here:
http://www.cornallergens.com/list/corn-allergen-list.php
Corn is used widely as a sweetener, non-stick agent, and thickener. It's in many soups, syrups, sodas, chips, crackers, juices, and most baked goods. It's also in wasabi.
Suggestions/How to Cope
I don't think people realize what an integral part food plays in social lives. Most holidays and events involve food, and some even center around food. It's difficult to explain to others why you can't eat their food, but sometimes it's necessary. I always insist on bringing a dish and explain that I have severe food allergies and don't want others to have to plan their meals around what I can't eat (the list is long and frustrating to work around if you aren't used to it). If I'm eating out for a business meeting, I try to explain to the wait staff that I have severe food allergies. Sometimes they are more tolerant when I proceed with a list of items to hold from my salad. Salads are usually a safer bet if you hold the dressing and double check that it does not come with croutons or cheese. I find these two items are commonly left off the menu. I stay away from meat, soups, or sauces because not even the wait staff usually know what all went into preparation. If I feel like eating out, I tend to stick to vegan sushi options and explain no wasabi (contains corn starch) or soy. I always carry Larabars around with me or other snacks just in case I can't find anything on the menu or I leave hungry.
I feel most comfortable eating my own meals at my own table. I have learned to carry Benedryl with me at all times because of all of the mistakes made by wait staff and chefs - some of them not so cleverly covered up. Restaurant staff don't seem to understand the impact allergies have, and if they did they probably would prefer not to serve us for liability reasons. I can relax and enjoy my meal when I know exactly what is in it, and usually that only happens if I make it. There are specialty bakeries that cater to people with allergies, and I fortunately live near the Flying Apron. In fact, I picked up some goodies today.
Anyone can be a creative chef if they need to be. No meal disaster is a failure if you learn from it. I've destroyed many batches of "bread", cookies, and pancakes trying to figure out a recipe that works. I own several gluten free cookbooks, raw vegan uncookbooks, and non-restriction cookbooks and experiment with substitutions - which I've gotten pretty good at. I also love watching the Food Network, especially shows like "Chopped" and "Iron Chef" because it forces chefs to work with ingredients that are rare. Rare for me usually means I'm less likely to be allergic to it.
Research Sources:
1. "Grains and Flours Glossary." Celiac Sprue Association March 24, 2009.
December 11, 2009 <http://www.csaceliacs.org/gluten_grains.php>
December 11, 2009 <http://www.wheat-free.org/blog/archives/27-wheat-by-any-other-name.html>
3. "Milk - One of the nine most common food allergens." Allergy/Asthma Information Association, Anaphylaxis Canada, Association québécoise des allergies alimentaires, Canadian Society of Allergy and Clinical Immunology and Health Canada April 19, 2007.
December 11, 2009 <http://www.hc-sc.gc.ca/fn-an/securit/allerg/fa-aa/allergen_milk-lait-eng.php>
4. "Avoiding Milk Protein." AvoidingMilkProtein.com
December 11, 2009 <http://www.avoidingmilkprotein.com/HiddenIngredients.htm>
5. "Milk." The Food Allergy and Anaphylaxis Network. December 11, 2009 <http://www.foodallergy.org/page/milk1>
6. "Soy." The Food Allergy and Anaphylaxis Network. December 11, 2009 <http://www.foodallergy.org/page/soy1>
7. "Soy - one of the nine most common food allergens." Developed in consultation with Allergy/Asthma Information Association, Anaphylaxis Canada, Association québécoise des allergies alimentaires, Canadian Society of Allergy and Clinical Immunology and Health Canada September 17, 2009. December 11, 2009 <http://www.hc-sc.gc.ca/fn-an/securit/allerg/fa-aa/allergen_soy-soja-eng.php>
Wednesday, December 2, 2009
DHEA
Important Note: Not all supplements and compounds are created equal. It is important to get DHEA through a prescription and research your other supplement choices. It is important that supplements be independently tested for quality and contents as the industry is not well regulated.
DHEA has become a standard therapy for people with lupus in the "traditional" medical community. Quite a few doctors don't seem to realize it is becoming standard, but there are links on the Mayo Clinic website, Webmd, and other online medical resources you can take to your health care provider (Please do!).
DHEA (dehydroepiandrosterone) is a naturally occurring hormone in the human body that is produced by the adrenal glands and then converted into estrogen and testosterone. After the age of 30, the body produces less of the hormone as time goes along (it's a little known fact that the human body also produces less enzymes to break down food as time goes along - which leads me to ask, do we produce less because we really need less, or are we just worn out??). Corticosteroids like prednisone also deplete the body of DHEA.
Dr. Julian Whitaker has written an article on the subject. Here is an excerpt:
"Yet DHEA does much more than this. It is active in the central nervous system, encouraging neuronal growth and targeting receptors in the brain that are associated with mood. It gives the immune system a boost by activating T-cell function and dampening inflammation. DHEA also enhances the circulatory system and, by increasing levels of IGF-1 (a marker of human growth hormone), has widespread positive effects throughout the body.
After age 30, DHEA production drops by about two percent a year. Yet within any age group, DHEA-S (a DHEA metabolite and blood marker of DHEA levels) levels vary dramatically. The early research on this hormone focused on these variations and their links to disease. What virtually all of the studies found was an inverse relationship between blood levels of DHEA-S and the incidence of Alzheimer’s, cancer, diabetes, cardiovascular disease, and other age-related disorders—the lower the DHEA-S level, the greater the risk of disease."
DHEA has been successfully used to treat fatigue, mental confusion, and depression to name a few. It is important to test your levels of DHEA prior to taking the supplement. It's not good to have too much DHEA, just as it is bad to have too much testosterone or estrogen.
In the past I have tested low for DHEA, but since starting LDN I am well within the normal ranges. If you take DHEA and are planning to start taking LDN, I would recommend getting retested periodically.
More links for information on DHEA:
http://www.whitakerwellness.com/our-therapies/the-lowdown-on-dhea/
http://arthritis.about.com/od/supplement/g/DHEA.htm
http://www.mayoclinic.com/health/dhea/NS_patient-dhea
Need a doctor? Try an Environmental Medical Doctor
I love my doctor for several reasons. He doesn't mind me doing my own research and is happy to answer questions. If I stumble across research he hasn't seen before, he takes it and runs with it. If another patient finds research of value, or if he reads something new in the journals, he brings it to my attention and will integrate it into treatment if appropriate. He believes in allergies. He believes in testing for parasites and other bacteria. He believes that the chemicals around us can be very bad for us, especially parabens, fragrances, and other substances that aren't thoroughly regulated and tested. I could go on...
My doctor is a practicioner of Environmental Medicine. Here is an excerpt from his website explaining what Environmental Medicine is:
"Environmental Medicine offers a sweeping reinterpretation of medical thinking, especially its approach to many previously unexplained and ineffectively treated chronic diseases. The basis of this view is the simple concept that there are causes for all illnesses and the obvious, but not well accepted fact, that what we eat or are exposed to in our environment may have a direct and profound effect upon our health. The goal of Environmental Medicine is to identify the cause of a health problem and eliminate or reduce the level of exposure as much as possible. This usually requires changes in one's diet and/or environment. By eliminating the cause of the condition successfully, there is much less need for medication.
On the other hand, some patients may be experiencing health problems due to lack of specific nutrients such as vitamins, minerals, antioxidants and amino acids. These deficiencies often need to be corrected in order to bring about better health.
To put it simply, as environmental physicians, we strive to remove the cause of the condition and/or replace what is missing."
http://www.drbuscher.com/environmental-medicine
If you are frustrated with your current practitioner, you may want to give an Environmental Medicine MD a shot. Here is a resource to consider checking out:
http://www.aaemonline.org/
I've found that the testing is more expansive and the resulting care has been better than I received under rheumatologists and general practitioners.
Things I can do today that I didn't think I would be able to do...
When I was first diagnosed, I was so very sick. I couldn't sit or stand for more than 20 minutes, I would forget conversations that took place 20 minutes before hand, and I was in so much pain. As the year comes to an end, I'd like to look back and list the things I didn't think I would be able to do a few years ago.
Here are some of the highlights of 2009:
* I married a wonderful man who is very supportive
* I planned a wedding, helped my family cope with my brother's cancer diagnosis and treatment, bought a house, all while maintaining a career without having one lupus flare! I got sick a few times, but I didn't have a real lupus flare up.
* In the weeks before my wedding, I successfully completed projects and worked long hours to meet deadlines and still had energy to run errands and finalize wedding details
* I am working at adopting a raw vegan lifestyle that is very prep intensive. I'm back on the wagon with some encouragement and went vegan over the past week and had my first 100% raw day today. I don't anticipate being 100% raw all the time, but I'm going to do my best.
* I hiked 6 miles up Waimea Canyon in Kuaui on my honeymoon
* I had the energy the next day to hike 8 miles up the Napali Coast to a beautiful waterfall!
* I went out dancing with friends from my school days, and I was the last one to be tired out!
Below is a picture of Hanakapi'ai Falls. I went from in being too much pain and confusion to do much of anything but lay around to 8 miles of hiking. Woohoo!