WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Sunday, September 30, 2012

Blueberry Buckwheat Waffles

Buckwheat Blueberry Waffle Recipe:

1 cup buckwheat flour
1 cup GF Flour
2 teaspoons baking powder
3/4 teaspoon salt
1/2 teaspoon baking soda
1/4 teaspoon guar gum (omit if your flour already has it)
3 Tablespoons Rice protein
1/2 cup sugar


2 eggs

Beat whites until stiff in a separate bowl with a pinch of cream of tartar.

In another bowl mix together:

the 2 egg yolks
2 cups coconut milk (or other dairy free milk, though rice milk is not ideal)
1 tsp vinegar
5 Tablespoons coconut oil, melted.
3 Tablespoons blackstrap Molasses(unsulfured)

1 cup fresh or frozen blueberries(if frozen thawed and drained)

Add the wet ingredients to the dry ingredients and mix until combined. Pour 1/4 of the fluffy egg whites into the batter and gently fold them in with a rubber spatula, then fold the rest of the egg whites in to the batter as well. you can stop folding when only a tiny amount of egg white is still visible.

Pour 1/2 to 1 cup of the batter into a heated, greased waffle iron, sprinkle with a few blueberries onto each section and cook until the amount of steam coming out of the iron starts to decrease(and/or light indicates it is cooked). Repeat until batter is used. Serve waffles right off the iron or put them in a low degree oven to keep them warm if wanted.

Waffles freeze really well. Just make sure they are cool before you put them in the freezer bag or container. When you're ready to eat them, just heat them up in the toaster or microwave(for soft).

We ate these with plain homemade coconut yogurt and some of the frozen thawed berries. They were delicious! Much better nutrition profile then a store bought waffle :-)

Saturday, September 29, 2012

Dairy-free, Soy-free, Corn-free, Vegan Potato Soup

Abby has been wanting potato soup for weeks now. Simple enough if you can eat dairy,soy, corn etc- But what if you can't?

I decided I could use coconut yogurt and rice milk thickened with potato starch.

But, the big dilemma- Abby doesn't tolerate pork. How can you have potato soup without ham or bacon?

Make bacon out of your chickpea Nofu of course! :-)

You will need:
Chickpea Nofu
Coconut amino's(soy free soy sauce)
Maple syrup(grade B has a stronger flavor, you could use maple extract too if you tolerate it.)
Apple cider vinegar( I use braggs)
Dark brown sugar

First I made my "marinade" for soaking the chickpea nofu. I used almost equal amounts of everything except the vinegar and salt. I just used a dash of the vinegar and a shake of salt(will need more salt later)

Then I cut my nofu as thin as I could without it breaking. I pressed my slices of nofu between paper towels for about an hour( between paper towels,between two plates with something heavy like cans on top)

Then in a dry non-stick pan(no oil!) I turned the burner on low and carefully added my slices of chickpea nofu. You want to cook it uncovered super slow and frequently flip it. The first couple flips you have to be extra careful as until it starts to dry it will want to stick. I usually cook slow for 30-40 minutes on the lowest temperature. I flip every 5-10 minutes and gently press each slice. The point of this part is to "dry" the nofu as much as you can.

When it seems dry(should not be darker then golden brown usually develops some fine cracking) I remove from heat and put the pieces into my marinade. I cover the nofu in the marinade and place in fridge overnight. Believe it or not, soaking even for 2 days and those dried slices will not get mushy! (if they do, you did not dry your nofu enough.)

The next day I grill the nofu hard either on the stovetop or grill. The sugars will caramelize and brown up nicely. When it nice and brown(like the pic above) I remove from heat. I dice it and salt it heavily. I then fried it in a touch of coconut oil till very crisp. The end result was slightly sweet, hint of maple, salty and crisp- close enough to bacon to make a nice topping for the soup.

Seems like a lot of work, and though not hard was time consuming. Worth it though when you cannot eat pork,dairy,soy, etc.

The Potato Soup:

3 scrubbed peeled and diced potatoe's
1 diced yellow onion
2 grated carrots
1 Tablespoon parsley(dried is fine)
salt and pepper
1-2 cup plain coconut yogurt depending on how rich and creamy you want it.
1 cup plain original rice milk( a touch of gluten in this item, use what is safe)
1 tablespoon potato starch(mixed into the cup of rice milk)

I threw the onions,potatoes, carrots, parsley, in with a couple cups of water to just cover.(you could use chicken stock instead for a non-vegan version) It takes about 15-30 minutes to boil till soft. Don't drain, that water is part of the broth. I mixed in the yogurt, salt and pepper into the potatoes. I slowly added the rice milk mixed with potato starch about 1/4 cup at a time to make sure it did not get too thick.

Done. Topped with chickpea bacon. You could also add chopped green onion, or some green pea's for extra color. We added the carrots to get some yellow/orange color to the soup to make her forget there wasn't any cheese and of course add value. Abby said it needed a bit more salt, but was definitely a make again item.

We are going to try freezing the leftovers, if there are any! :-)

Wednesday, September 26, 2012

D Dilemma...

Today a friend asked how Abby was doing.. and really the big thing on our plate this week is to get her D level up. I have really stressed over it. Her D has been low for years and we have tried plopping her in the sun, and before project elimination we tried supplementing, and her D is ALWAYS low.

Low D is a pretty common condition in Mito,Mast, POTS, EDS, etc.. and really it seems most folks I know seem to have to supplement with D.

It seems that most D is corn contaminated as are most vitamins in general. OF course the supplement companies claim the vitamins are free from corn proteins, but corn allergies are weird things- most folks with a "serious" (there are degrees)corn allergy react to any part of the corn.

For example, Abby's coconut yogurt. I use a couple tablespoons of the So Delicious yogurt to culture my yogurt. Abby is allergic to the So Delicious yogurt- we suspect it is the xanthan gum(very often corn contaminated, to the point she eats nothing with xanthan gum) So, I have to make a second batch from the first batch I make before it is "clean" enough. Odds are the amount of corn in that 2 tablespoons is smaller then microscopic, but tell that to Abby's corn allergy.

I have no doubt that we could find a few D's she could take 1 or 2 times without immediate reaction, but after 3,4 and 5 doses, her allergy bucket fills up fast. I am doubting a week of D would make a difference.

I was chatting with my super smart Mom's( our group includes,Mito,Mast, EDS, POTS and a zillion other complicated and connected health issues) and someone said they had used the D as an oil on the skin- Well ah Duh! Abby might be able to tolerate that. Of course, she might not, but she seems to tolerate corn contamination on the skin if it is minute. Of course there is no way to know how much she is absorbing, but I will take some over none. Thankfully, the dosage for D can be quite high and still safe. The same Mom recommended a UV lamp. Well Ah Duh again! :-) Abby has a horrible time sitting outside- the temperature changes from going in and out can trigger all sorts flares with her. Sitting too long in the sun she can overheat easily.

As I was doing projects today thinking about the "D" dilemma, it struck me- after the last two years of fretting about finding a specialist,traveling to see one, biopsies, genetics, labs, wheelchairs, insurance, serious GI issues, serious food allergies, creating food out of air- this D dilemma is the most NORMAL thing to happen to Abby in forever! I have been grinning all day, just grateful for once for a very normal problem that anyone I talk to will understand.

Of course I am not minimizing her low D level, but fixing it just seems so much more doable, so much "easier". The way I see it, if I can make a tasty cheesecake with no dairy, no soy, no nuts- I can help Abby manage her D Dilemma.

Tuesday, September 25, 2012

Not Much...

(Last week I made caramel candy for Abby- still need to tweak the recipe for consistent results- but they were a hit! Hopefully next week will get that posted.)

QUICK TIP: Before I forget- you can make coconut milk/buttermilk. Add 2 tablespoons of Apple cider vinegar or fresh lemon juice to 1 cup full fat coconut milk- let rest about 10 minutes. If you have leftover, freezes well for future use.

I have been busy with my own projects this week and haven't done any new recipes for Abby.

The short lived cool weather last week was a trigger for me to do some much needed catch up on my organization, deep cleaning and various projects I seem to always have piled up around here.

I have been playing more with chickpea nufu. I have found that if you "dry fry" the tofu, and really get it dry, it will hold it's shape very very well. Last week I dry fried it until it was quite dry. (Dry fry- no oil, very low temperature, lots of flipping- the purpose is to cook out as much water as possible) I then threw into marinade for 24 hours- and was excited to see it had held it's shape completely despite the soaking. Even my tofu hating family members were very impressed with the final texture and flavor and grilling it. I will likely play with it again this week - I have some good ideas on how to flavor and use the texture to make something tasty and interesting.

Abby is doing alright. I almost hate to brag even when she is having an exceptional day, every time I do it is just asking for a bad day! LOL- So I am a little superstitious. No bad days, some iffy ones but pretty stable. We are both getting ancy to try some new foods. I am very glad to say that she has been tolerating small servings of the coconut yogurt. This was a HUGE step for us. I have been feeling pretty strongly that Abby's stability is pretty dependent on her gut health. This year I have read more and more about how much of our immunology is based in our gut- who knew right? Based on the GI issues she developed after the last round of antibiotics last year, my "gut" says getting her gut flora healthy is an important step on this journey.

She did try the cucumber, and wasn't allergic- but apparently her taste buds disagreed - kind of funny really, she really disliked the flavor! She tried a couple times to eat it since she was very impressed with the nutrition, but just no way for her to get past her repulsion! LOL. So, yesterday I mixed plain coconut yogurt, coconut sour cream, a touch of dill, parsley, garlic, onion flakes, salt a touch of pepper- and it was close enough to Ranch dip to make Abby very happy! It will make a great sandwich spread, salad dressing(thinned with a little coconut milk) or veggie dip. Love it when we have success. She is off the eggs right now- they were giving her "warning" signs so before we developed a reaction we have had to cut them out mostly. Still adding to baked goods, but for now none straight- a little bothersome since much of her protein intake was egg based the last couple months. So fingers crossed she continues to handle chicken, chickpea and rice protein. If we have a brave moment we really need to try a couple more protein sources again- maybe she has healed up enough to tolerate one now.

Back to hunting dust bunnies- would rather be doing kitchen science(I did order some ultra-tex 3 and 6-that should be entertaining!) but whether I like it or not, environmental allergens are just as important to address when you have chronic health issues- clean air is as important as clean food. :-)

Saturday, September 22, 2012

Coconut Tzatziki Abby Style.

As usual we are always on the hunt for a veggie, fruit or any food that has a great nutritional profile that Abby can tolerate. Abby asked the other day about cucumbers. Not a food that we have often here. We do like Tzatziki but in the past we either buy it premade or I've made it with dairy, so Abby hasn't eaten it. One of the few foods Derek really is not fond of is cucumber, and though I don't mind it, it just isn't something that I buy for myself. We aren't even that interested in pickles- though if I knew what I know now about their great nutrition I would have made an effort to put them on the table more frequently. This Tzatziki is the "cucumber challenge" for Abby.

Abby looked of up their value and we were very surprised to see that they are a spectacular source of vitamin K. They also have quercetin which is a favorite supplement in the allergy suffering world. One of our favorite online resources for researching food values is the WHfoods. Here is a couple bits of info I cut and pasted but if you go to their site you can read more about cucumber nutrition.
Nutritional Profile
Cucumbers provide us with a variety of health-supportive phytonutrients. Included among these phytonutrients are flavonoids (apigenin, luteolin, quercetin, and kaempferol), lignans (pinoresinol, lariciresinol, and secoisolariciresinol), and triterpenes (cucurbitacins A, B, C, and D).

Cucumbers are an excellent source of anti-inflammatory vitamin K. They are also a very good source of the enzyme-cofactor molybdenum. They are also a good source of free radical-scavenging vitamin C; heart-healthy potassium and magnesium, bone-building manganese, and energy-producing vitamin B5. They also contain the important nail health-promoting mineral silica.

1 pound (1 pint) plain coconut yogurt (whole fat to help it set firm in fridge)
1 cucumber, unpeeled and seeded
1 tablespoon plus 1/2 teaspoon kosher salt(I just use pink himalayan, works fine)
1/2 cup coconut sour cream
1 tablespoon Braggs Apple Cider vinegar
2 tablespoons freshly squeezed lemon juice (1 lemon)
1 tablespoon good olive oil
1 1/2 teaspoons minced garlic
1 1/2 teaspoons minced fresh dill(dried works!)
Pinch freshly ground black pepper
Place the coconut yogurt in a cheesecloth or paper towel-lined sieve and set it over a bowl(I did this a couple days ago because I was planning on using Abby's last batch of homemade coconut yogurt for baking and sauces). Grate the cucumber and toss it with 1 tablespoon of kosher salt; place it in another sieve, and set it over another bowl. Place both bowls in the refrigerator for 3 to 4 hours so the coconut yogurt and cucumber can drain. (Before adding the cucumber I still really squeeze it to get any fluid out)

Transfer the thickened coconut yogurt to a large bowl. Squeeze as much liquid from the cucumber as you can and add the cucumber to the coconut yogurt. Mix in the coconut sour cream, vinegar, lemon juice, olive oil, garlic, dill, 1/2 teaspoon salt, and pepper. I refrigerator for a few hours for the flavors to blend. Serve chilled. We use it like Mayo for sandwiches or a dipping sauce. I was pleased with the flavor of this- it was a touch "milder" then the dairy version or store bought, but really very very close and I don't think you would know the difference if you weren't a frequent Tzatziki eater. :-)

Thursday, September 20, 2012

The Histamine-Restricted Diet

As we have worked to sort out Abby's diet issues the one resource that is close to a Bible for me and many other multiple allergy/Sensitivity/intolerance suffers is;

Dealing With Food Allergies
By Janice Vickerstaff Joneja

By far her lists for various restrictions are the most complete.

Below is the lengthy list of NOT allowed on her listed Histamine-Restricted Diet:

Not-Allowed Milk and Milk Products

Any manufactured dairy products made with restricted ingredients
Cheese of all types
Yogurt (we break this rule with coconut yogurt,but since there are no safe probiotics for Abby on the market that are dairy,soy and corn clean this is the only way to get those healthy bacteria into her- however, restricted to 2 tablespoons a week)
Any milk products produced by fermentation

Breads Cakes and cookies, breakfast cereals,crackers and Pasta/Noodles

BLeached flour(benzoyl peroxide is the bleaching agent)
Popcorn with artificial flavors
Manufactured rice entrees
Any baked product with restricted ingredients such as artificial colors,flavors,and preservatives
Flavored instant oatmeal
All manufactured pasta meals in packages and cans.


olives in vinegar or brine
vegetable dishes with restricted ingredients
Most commercial salad dressings, including Mayonnaise

Fruit- Not-Allowed.

blueberry(we break this one at times)
lemon(we break this one)
peach(break this one regularly)
fruit dishes, juices,jams, jellies and preserves made with restricted fruit and other ingredients

Meat, Poultry, and Fish- Not Allowed

All fermented processed meats such as, salami, Bologna, pepperoni, wieners, sausage,
Smoked or pickled meats
all leftover cooked meat(Abby's eats leftover meat if it is frozen promptly)
all shellfish
all fish whether fresh,frozen or canned unless it has been freshly caught,gutted and cooked without delay.(Abby did well last year with white fish, now she eats no fish- fish is also coated in a corn slurry to help transport, so double whammy)
Pickled fish
Smoked fish
Any meat, poultry, or fish made with restricted ingredients

Eggs NOT Allowed-(we break this ALOT- despite a skin and RAST positive allergy she does great "digesting" eggs, she is so limited with protein we haven't stopped eggs)

Dishes in which egg is the main ingredient, such as Souffle,Mousse, Quiche, omelet
Scrambled boiled, fried
egg dishes prepared with restricted foods
raw egg white

Legumes- NOT Allowed

Soy beans
Red beans

Nuts and Seeds Not Allowed

Pumpkin seeds
Any nut or seed mixtures with restricted ingredients(artificial flavors, colors.preservatives)

Spices and Herbs NOT Allowed-

cloves(break this one)
curry powder(not sure which spice in curry mix, but Abby reacts horribly to traditional spices in Indian food) Turmeric is a bad one for her.
seasoning packets with restricted ingredients
Foods labeled "with spices"

Fats and Oils NOT Allowed
All fats and oils with color and/or preservatives
Hydrolyzed lecithin
Prepared salad dressings with restricted ingredients
Gravies pre made from packets, cans and jars

Sweeteners Not Allowed-
Flavored syrups
Prepared dessert fillings
prepared icings/frostings
Spreads with restricted ingredients
cake decorations
commercial confectionery
commercial candies

Beverages- Not ALLOWED

Flavored milks
fruit drinks and cocktails with restricted ingredients
cola-type carbonated drinks
flavored coffees
tea, regular or green(Abby breaks this one too)
all drinks with "flavor" or "spices"
all alcoholic beverages
de-alcoholized beers, wines, and other beverages

Other NOT Allowed
Chocolate and cocoa
Flavored gelatin
prepared relishes
soy sauces(abby breaks this with coconut aminio's they are fermented.)
Miso(no because soy and no because fermented)
Commercial ketchup(any ketchup made with tomatoes)

Within the Mast community patients follow this list as needed- many patients tolerate many of the items listed. Like Mito, histamine issues have a lot of variables.

There are other foods that some folks have issues with like sweet potato- some do well and some do not- Abby can rotate sweet potato and chickpea in and out reasonably well.
As always you need to consult with your Dr. before making radical changes to your diet- this is not medical advice, just the list that we have found most helpful in eliminating triggers in Abby's diet. I marked the items that she breaks on a regular basis- though I wish she could eliminate all of the foods listed, because of her other GI issues and lengthy list of allergies she is so limited as it is, if there is something that has valuable nutritional value for her that she tolerates we encourage her to eat it for now. She is pretty good tracking reactions and triggers so she rotates out food when needed.

Wednesday, September 19, 2012

Kelly Dorfman is wondering about GMO Corn too....


This article was posted on a blog written by someone who has suffered from corn allergies. The article was published in the Huffington Post by Kelly Dorfman who is a clinical nutritionist.

One of the interesting things about GMO corn is, that even if the patient suspects he/she is allergic or intolerant of corn often the skin testing and RAST comes up negative..elimination is the only sure test. Many allergist refuse to acknowledge that corn can cause the type of havoc many patients are describing. Abby has tested positive off and on since she was a baby, but I am starting to wonder if the genetic modification of the proteins in corn are variable enough to make it difficult to test consistently as positive or negative.. just me thinking..

I have noticed this year that Abby is not the only Mito patient that has gained relief from removing corn, and it seems each week my corn allergy groups are growing by leaps and bounds. Often we have members with chronic health issues who notice an improvement with the absolute removal of corn, sometimes only mild improvements and for some miraculous. Over time they literally get their lives back as their bodies heal.

In the Mito population often there is GI system involvement. These patients often need supplemental nutrition. Unfortunately, not one supplemental formula out there is clean enough of the top 8 allergens plus corn for our growing corn allergy plus mito patients..

Corn allergies have an extreme variable in symptoms. From behavior and mental health- hyperactivity, inability to focus, brain fog, OCD, Defiance, anxiety, even some parents reporting almost a bipolar presentation. To varied physical symptoms, some just have skin issues, like rashes and eczema and acne, others have asthma, infections, some find their pre existing autoimmune disorder flare horribly, some have overwhelming fatigue and muscle and joint pain very much like Mito fatigue. GI issues like any allergy can be significant. Some patients report malabsorption, constipation, chronic diarrhea, gastritis, pancreas issues, gallbladder.. the list goes on. Thankfully, very few patients are reporting anaphylaxis, however there are some reported cases as well.

Considering that 9 out of 10(you cannot go outside without exposure because of the corn in our gas) items of our food and environment have some sort of corn hidden, added, derived it is a dangerous world for the patient with corn allergies. Considering much of our agriculture and info structure is based on corn, no wonder we have found such resistance in recognizing this as a dangerous and growing health condition. I was so joyful this summer to see that the drought destroyed a lot of corn- awful huh? But it takes every minute of everyday for many corn allergy sufferers to just try to eliminate even 80 percent of corn from our lives.

When you are dealing with diseases like Mito where the symptoms are so similar to common symptoms of corn allergy things get tougher to sort out.

Hands down the only true way to know if your symptoms are either being caused by corn or intensified by corn is to completely remove it from your home and food. If you have followed my blog or know someone who has removed corn you know it can take months to hunt it all down, remove it and start seeing improvements.

A few of us with children with Mito who struggle nutritionally worry a great deal about what if their(our childrens) GI goes into complete shutdown? No formula for them, or if we do odds are the minute amounts in even the cleanest supplement will likely just intensify the progression of their disease process. Corn needs to be recognized like peanuts or shellfish or dairy in all of it's hidden and derived glory on all labeling. Like Mito, and scary reactions to Miralax, America needs to wake up and recognize corn is destroying some of us. Considering the number of corn allergic patients has skyrocketed in the past 30 years, you have to wonder how much of that is to blame on GMO.

Kelly Dorfman Clinical nutritionist, Author

Corn: New Worries About an Old Favorite
Posted: 09/18/2012 12:20 pm

I am starting to worry about corn. It started a few years ago when I noticed allergic babies in my practice were beginning to react to the infant formulas designed for them. These specialty products are made from basic protein building blocks (amino acids) rather than pre-digested milk protein. Minimum digestive function is required to tolerate them. In addition, they lack the complex antigens that tend to set off immune reactions, so they were a dependable way to save the day (and baby).

The carbohydrate portion (about 55 percent) of specialty formulas is usually a corn derivative, such as corn syrup or solids. Yes, corn syrup is sugar, but babies cannot survive on the South Beach Diet and always look good in bikinis. They need a carbohydrate source. In mother's milk, the carbohydrate source is lactose. Some babies also have trouble digesting lactose, so specialty formula manufacturers prefer other carb sources.

Despite being completely unnatural, these formulas are a critically needed feeding alternative for sensitive babies. But several years ago, I started to notice a problem. At first, it was a case here and there, but soon a growing number of infants appeared who could not tolerate any commercial formula. One frantic mother sat in my office with a red, mottled baby who screeched through the entire hour appointment. When I asked how often she was distressed at this level, the exhausted mom replied, "23 hours a day." Several specialists and numerous formulas yielded the same distressed response.

I suspected corn. By 2009, most available corn was genetically modified (GM). Adults in my practice were also starting to report corn intolerance. Corn problems are particularly devastating to those with celiac disease. They already cannot eat gluten-based grains and depend on corn tortillas, popcorn and grits to take the place of bread and pasta. Now many of them reported feeling better skipping corn, too.

According to some clever, presumably non-agri industry supported scientists, the price for messing with genes is more reactive and problematic proteins. The safety of GM foods is still being debated elsewhere, though not in as much gory detail as it deserves. Clearly, a policy of playing with our food now and deciding if what we are doing is safe later is risky. Our collective history is littered with the dead bodies of those who paid the price for scientific arrogance or someone else's economic self-interest. Consequently, accepting assurances that ingesting food with inserted bacterial DNA is no different than eating the unadulterated stuff, from the very people who stand to gain from selling said food, could be hazardous to your health. When people started reporting symptoms from eating adulterated corn, I listened and blamed the GM process.

As is often the case, one does not know what one does not know. A study published earlier this year about bee colony collapse suggests a new wrinkle in corn land. Since 2006, honeybees have been dying at an alarming rate. Farmers need bees for crop pollination and if they keep dying at the current rate, there could be serious food production problems. Dr. Chenshen Lu from the Harvard School of Public Health has studied the colony collapse phenomenon. His research concerns the high-fructose corn syrup used to sustain bees over the winter. Specifically, his test target is imidacloprid, one of the world's most popular pesticides.

Beekeepers switched from honey to the cheaper high-fructose corn syrup for winterizing about the time that colony collapse disorder started. Most corn crops are sprayed with imidacloprid to control aphids and other common corn pests. As a result, bees are exposed to small amounts of imidacloprid through corn syrup. Lu set up a series of hives using corn syrup laced with different doses of imidacloprid and a control hive with imidacloprid-free corn syrup. The bee death toll in the hives exposed to even minute amounts of the pesticide was devastating. Fifteen of the 16 hives exposed to imidacloprid were completely wiped out.

Other studies concurred, and added a list of other symptoms that could rival any of the drug side effects read off at the end of TV commercials. Loss of navigational control, for example, sounds ominous. This also affects teenage drivers who cannot seem to get home on time, no matter when they claim to have left the party. In bee language, it means the worker bees cannot find their way home after collecting pollen.

Germany, France and Italy have all suspended some uses of imidacloprid because there does not seem to be any safe level for bees. Lu is quoted in the most recent issue of Psychology Today as saying that just like the bees in his study, "People may be unwittingly exposed to small amounts of imidacloprid that are subtly undermining human health."[1]

In my practice, the health effects are often subtle, making it extremely difficult to ascertain whether the problem is corn, pollutants, food adulterations, fabric softener, sunscreen additives or a high pollen count. The list of possible irritants is longer than the proposed Republican budget cuts. The problem is the loss of navigational control regarding food safety. Somehow we have completely lost our way.


[1] Nikhil Swaminathan, "Stealth Attack." Psychology Today, 3 Sept. 2012. Link. [See magazine for full article with quote.]

For more by Kelly Dorfman, click here.

Tuesday, September 18, 2012

Close enough to ZERO FUNDING for Mitochondrial Disease

This week I have been following the conversations on a few different Mitochondrial Disease support groups on facebook. I was reading a post on the UMDF group on facebook and a member shared the figures below-

It is estimated that 1 in 3000 have some sort of mitochondrial disease- here is the government funding for a disease that affects so many,and disables, and kills. Starting to wonder if the Government doesn't want folks to know about Mito- we might start asking the hard questions like the Autism community did, which is now also connected in some cases to Mitochondrial Disease. When disability claims are up by 50 percent in one Presidency, don't you want to figure out why? Cheaper in the longer run to figure out treatments and cures then to bankroll a swelling population for a lifetime.

Alzheimer's Disease 1:85 NIH funding $529Million

Juvenile Diabetes 1:500 NIH funding $156 Million
Parkinson's Disease 1:500 NIH funding $172 Million
Muscular Dystrophy 1:100,000 NIH funding $162 Million
Autism 1:110 NIH funding $141 Million

Mitochondrial Disease 1:3,000 NIH funding $11 Million

Yep a measly 11 Million- Mrs. Obama likely spent that on vacations alone last year.

Monday, September 17, 2012

Abby's Buckwheat Gluten Free Loaf(breadmachine)

I had promised a couple weeks ago to post this one, it is definitely a favorite around here. It is also forgiving. I have added a bit more molasses at times or more sugar..If Abby needs a little more protein I have added a bit of rice protein. I have made it with either 3 or 4 eggs, but like it better with the 4 eggs. I do always use a higher fat content coconut milk, either homemade or canned. I have spiced it like gingerbread, and it has been a faithful riser and moist. As made below it makes a nice sandwich bread. It toasts well, and freezes well, see why it is a favorite?


1 1/3 cup of coconut milk
1 cup water(we used bottled crystal geyser)
4 eggs
3 Tbsp grapeseed oil
2 Tbsp apple cidar vinegar(Bragg's is the brand I use.)
2 Tbsp of maple syrup
1/3 cup organic cane granulated sugar
2 Cups buckwheat flour
2 cup gluten free baking flour(
1 1/2 teaspoon pink himalayan salt
1 Tbsp guar gum(heaping)
1 Tbsp active rise yeast

Instructions if using a breadmaker:
Add all ingredients in the order presented above(or how your breadmaker requires) into the breadmaker pan.
Select a rapid white or gluten free option. These ingredients will make roughly a 2.5 lb. loaf, and most breadmakers will have an option to select the size of your bread.

Saturday, September 15, 2012

Mito Awareness, Corn and Mast

I don't have any new recipes or rants today. :-)

Just some musings.

Tomorrow kicks off Mitochondrial Disease Awareness Week. I feel like I have not learned much between last year and now on the Mitochondrial front, except that my heart has been crushed this year watching so many children and adults suffer- really really suffer from this disease. For some I have watched a slow progression, some have been fighting day to day to just stay alive. Some like Abby have found ways to stabilize or even bounce. My emotions are all over the board. From hope to grief, to determination that we can manage this process. I admit, likely some denial, but the placebo effect has been working much better then "expecting" her to progress. The mind is truly a powerful thing.

I have been fortunate to get to know a lot of other families who are on a similar journey as Abby. They have opened my eyes and given me hope and helped me realize there is usually more then one way to skin the kitty!.

We learned that meds (Miralax especially damaging)and the cocktail or any medical interventions popular with the "Mito Protocol" were not for Abby. We learned less is more for Abby. We learned that Abby's extreme sensitivities to food can be flipped to our advantage. Once we found the foods Abby tolerates, we pick and chose the foods with the most value. You can get the vitamins and minerals you need without fortified foods or vitamins. Despite what our Government and commercial food producers would have you believe.

Many ups and downs this year, but we have ended the year with hope and stability. I wonder what I will be reporting at the end of next year?

Still exploring Mast cell activation syndrome. Everything we do, we do slowly. Abby just now seems more stable after 2 appointments in one week. While we work through it we stick to a low histamine diet and pay attention to triggers. I really credit the Mast cell population and their infinite knowledge for Abby's more stable position. Removing allergens,intolerances, triggers, histamines.. has been key this year.

Corn- if there was ever an enemy in our home it would be corn. We feel like we have removed a good 80-5 percent of corn from our home, and considering it is in everything from vitamins, to fortified foods( most rice, breads, milk, etc) and even water we feel we have done a good job, though still room to improve. Interestingly, I am finding that more and more Mito families are finding that corn is causing havoc in their mito family members too. It appears that all the supplemental formula's are tainted with corn(the vitamins, etc). Hoping by next year some Pharmaceutical companies will figure out they could help more patients by scrubbing corn from their products, and we are talking completely! The parts per million rule the Gov set up just doesn't work for our sensitive orchids.

The mast cell connection is developing. I cannot count the number of families who are Mito and mast patients. Or are POTS-Dysautonomia patients and Mast- or EDS, POTS and Mast. Dr. Theo found that Mast cells can cause mitochondrial damage, I am interested to see if the research will cement these connections. I have had the joy to watch a couple Mito patients treat the Mast issue and feel better then they have in a long time. Also a few Mito Specialists are listening and paying attention.

So, maybe I do know more this year. I know that even with the same diagnosis, treatment is individual to the extreme. There is no Mito guide or protocol that fits all or even some. I have recognized that the diagnosis can cause more damage then good. I have seen that despite the huge population of patients who have mitochondrial related disorders, there is ZERO government support(well not zero, but very very low). I have learned that even without government support there are thousands of researchers out there that are working each and everyday to find the connections for us. One day during Mitochondrial Disease Awareness week, and hopefully soon, we will see the White House light up green- we can hope right?

The best part of this year for us is the recognition that because they don't know much about Mito, there are things we can do. Small changes in our life have given Abby stability. Being sensitive to her needs have reduced the flares. Living differently to protect her health isn't bad. The whole being normal thing? Way way over rated. Abby said she would rather have 20 years as a hermit feeling better then 1 year of normal and destroying her health. Derek and I agree.

Wear something green this week- think about all the Mito patients out there holed up in their homes, or struggling to make it through each day. Thank the researchers who are working hard to figure out why our mitochondria are getting sick- and mostly, thank the families who so willingly share what works for them, and help you figure out what works for you.

Friday, September 14, 2012

Easy Microwave Coconut Caramel

I am always looking to improve on what I already know- caramel being one of the things I always have room for improvement on. :-) This is sooo easy, I thought for sure that there was no way it would work- WoW Not only does it work, it is AMAZING!
The Picture above is room temperature- perfect for dipping, pouring over ice cream... yogurt.. YUM! Of course in the fridge it firms up a lot.

Another quick microwave caramel
1/2 cup sugar
1/4 cup Lyles golden cane syrup(if you don't have a corn allergy, corn syrup works)
5-6 drops of lemon juice
dash of salt(I used 3 dashes! LOL, pink himalayn- we like it salted.)
3 Tablespoons coconut cream(off the top of cold coconut milk or 3 tablespoons heavy cream)

Combine the sugar and Lyle's and lemon juice in a microwave safe 2 cup glass measuring cup- mix it well to try to get all the sugar moist.
Cook in microwave for 3 minutes(depending on micro this could vary, mine is OLD and 3 did great) no need to cover etc(very important-you need a 2 or bigger glass measuring cup, and the sugar melts it bubbles and the measure has to be big enough and capable of handling the heat)
Mix the coconut cream and a dash or two of salt into the caramel- mix well will get firmer as it cools.
Caution- HOT SUGAR! You could skip the coconut cream if you wanted something firmer or to use in dessert recipes I guess.. we wanted a dipping sauce :-)

Thursday, September 13, 2012

Chicken Jerky

I found a like new dehydrator the other night and hauled it home.

Abby only tolerates chicken for meat. There isn't a jerky anywhere on the market that is safe for her. Very few chicken jerky's out there. Those that do exist, are loaded with chemicals and contaminates for Abby. Lots of turkey, but she reacts to turkey. Of course beef doesn't agree at all.

Maybe a bit ambitious for my first use of the dehydrator but why not go in head first?

Partially frozen organic/clean chicken breast(trim off any fat)
Coconut Amino's(same idea as soy, but without the soy!)
Coconut vinegar
organic lemon juice(we keep a drawer of safe lemons)
Pink himalayan salt
ginger powder
garlic powder.

I am guilty of just throwing things in for a marinade, I keep adding this or that until I get the flavor I want.

I cut these strips with the grain(for some good chewing)as thin as I could get them.

last night around 8pm I threw them in the dehydrator, and this morning pulled them out.

NOTE: With poultry jerky it is crucial that after pulling from the dehydrator you place in oven at 200(or lower if your oven will) for 30 minutes, the jerky doesn't get warm enough in the dehydrator to kill potential bacteria.

Abby has not sampled yet, but her designated food testers; Aka brown poodle and black poodle have declared the jerky as "exceptional." :-)

Wednesday, September 12, 2012

Pizza for a Cause!

I have cut and copied(mostly)from Kristi Wee's blog to post the announcement for the local MitoAction Social group Awareness week fundraiser. If you have read any of my blog, I am not one to push fundraisers, but this is way bigger then a fundraiser. Kristi has been seeking answers on what is wrong with her daughter and quickly found no support for families in the Houston area- she fixed it! With support from MitoAction her group has grown into a network of Houston families that now have a support system. Believe me, if we could eat California Pizza we would, but since we cannot, I wanted to peer pressure my readers to grab some Pizza and take your flyer! The money that gets donated to Mitoaction will go to helping Mito families.

In just a few short weeks the entire nation will be recognizing and honoring Mitochondrial Disease Awareness Week. For those of us in Texas we are trying to give back and pay it forward all at the same time! California Pizza Kitchen has graciously agreed to donate to MitoAction 20% of the revenue for those who dine-in, take out, cater or curbside pickup (and bring this flyer) the week of September 16-22 , 2012 FOR THE ENTIRE DAY and AT ALL TEXAS CPK LOCATIONS.

MitoAction’s Mission:

While helping families living today with mitochondrial disease, we strive…

To improve quality of life for adults and children affected by mitochondrial disease.
To raise awareness internationally about mitochondrial disorders, and their relationships to other diseases.
To provide specific and practical materials that help patients to manage their symptoms
To aggregate and connect the international mitochondrial disease community and to engage the pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders.
To create tools that empower patients and caregivers to be advocates for themselves or their children.
Please come out to support MitoAction and continue to spread awareness about Mitochondrial Disease! Please don’t forget to PRINT the flyer!

We look forward to seeing you there!

If you or your family is affected by or suspected of having mitochondrial disease, we invite you to join us at our Mitochondriya’ll Social on September 22nd at Memorial Hermann Hospital, Memorial City from 10am-1pm (Conference room in the West Pavillion)… more details here. Refreshments… California Pizza Kitchen Pizza, of Course!

For my Gluten Free friends...here are some options for your meal!

Tuesday, September 11, 2012

National Invisible Chronic Illness Week

September 10-16 2012


This week supports so many of the families and friends we have made through our 17 year journey with Abby.

So many that identify with this population who even with a diagnosis are faced with a lack of support from friends,family and medical personnel. Many spent years seeking a diagnosis. This population "looks" healthy often enough, yet each struggles with fatigue,pain, brain fog and hundreds of other symptoms that cannot be measured in a lab and therefore often are ignored.

Have you seen someone park in a handicap spot and walk briskly to the store? Before you assume they are abusing that parking spot- maybe they have a disorder with heat intolerance, or one of hundreds of other disabilities you cannot see.

This week is more important to us then Mito Week. This week covers all the patients who have suffered trying to get a diagnosis and treatment. My allergy online family who for some just breathing in the smell of popcorn makes them physically ill for weeks and no one believes them. Or my Lyme friends who fight chronic health issues yet no Dr. in Texas will believe Lyme happens here or even that they need further treatment.. Or EDS friends, or Mito friends, or chronic fatigue friends, or Mast cell friends..or my Mito online family. The literally thousands upon thousands of patients who suffer and suffer from hundreds of disease processes that aren't visible.

Things need to change. If Drs. would change their attitude toward this population of patients so would the rest of the world. I want all of these populations not to fear that the Drs. won't help them, I want these populations not feel embarrassed to ask for help because they look too healthy to ask, I want treatments for these populations, and better yet cures.

I ask that if you see Abby heading in a store or an appt without her chair- Don't judge. That 2 hours out of the house cost her dearly. She walks for you, the reader that might judge her and say she "looks to healthy to be sick." She walks to be normal. She hates taking a handicap spot, because she feels folks will judge she doesn't "deserve" to shorten her walk to protect her health because she agrees with reader,she thinks she looks too healthy to be sick and every time she does to avoid being judged it makes her sicker. She has given up her favorite activity of going to the movies because the popcorn in the air makes her sick, she did not ask the majority to give up popcorn, but don't judge when she won't leave the house.

It would be so much easier to get support,help, and care if those with invisible disabilities had some obvious manifestation of their disease- a tube, a chair, a walker.. but who wants that? Abby saves up her energy to look normal, to avoid being judged. She has always seen it as a mixed blessing, she hates the stares she gets when she uses her chair, but she hates the stares she gets when we park in a handicap spot and she walks into the building looking perfectly healthy just as much. Looking "normal" has given her a huge gift in the past because if she played her cards right she could blend in at school, at the store, with friends- no one needed to know for those moments. It cost her dearly to look normal to avoid being judged. She feels so embarrassed that she pushes her body too far and causes more damage. No child, no patient should feel ashamed,guilty or judged for having an invisible illness.

Monday, September 10, 2012

Winter is Coming!

(Yes, I love Game of Thrones )

I happen to love this time of year best in Houston. The cool fronts start rolling through, cool nights and sunny days. I get the gardening bug and am deciding on which veggies and herbs to throw in for the "winter crop." Of course I have ragweed allergies but it is so worth the itchy skin,eyes, nose to be out in what I consider perfect weather.

For Abby this time of year is about preparing herself. For the most part most of the families I have chatted with or read their blogs,they too also start preparing for what is to come. The beginning of winter is not something to look forward to..back to back viruses, temperature change means difficulties in regulating body temperature which means POTs, Dysautonomia issues. The dry skin, trying to keep up on school work, more Drs. visits from being sick which generally means more viruses from everyone else visiting the Dr. office because they are sick! :-) Dealing with Public Schools who resist recognizing their children's issues..more GI issues from viruses or from the dysautonomia.. and for some multiple hospitalizations.

Some of our prep includes-

Humidifier cleaning and making sure it is running well.
Cleaning air filters.
Serious scrub down to remove/kill any dust mites and mold that could possibly exist.
Electric blanket.
heating pad, extra blankets.
New slippers, robes.
Good and safe lotion.
Shampoo for dry scalp.
medication check.
Tights- time to stock up! These she wears under her clothes to help her stay warm and help her circulation.
long sleeve soft cotton t-shirts for under clothes.
gloves- yep, even in Houston's mild weather she needs them.
stocking the house with safe tea's.

I am sure I am missing a million "prep" items. I know I am trying very hard not to think about all the health issues that are almost promised for this winter. We are trying to think about Halloween, Thanksgiving, Christmas.. fun new winter clothes just waiting to be worn, yummy winter stews and soups and roasts..

Abby had a little bug over the weekend.. of course my heart sank, I simply panic the minute she gets sick now, because after last winter I have a clue at just how scary winters can be for the chronically ill populations. Last night we decided odds are the two outings last week to the Dr and the lab earned her the first bug of the year.

Despite our optimism, in the back of our heads as we enjoy these fall weeks, I cannot help but think Winter is Coming.

Friday, September 7, 2012

Do you want to be one with a star on your belly, or with those who do not?

For as much as I want a final and absolute diagnosis- and for as much we understand a Depletion is a depletion is a depletion- we just won't accept Mito without a gene.

On year 17 with Abby. She has has a load of diagnose's- IFSH, Undefined Congenital Myopathy, mitochondrial myopathy,depletion, and as science figures new things out, her diagnosis is bound to change. Based on statistics we stand a good chance it will change in any case.

A debate of sorts with all the families is who has star's on their bellies and who doesn't?

Clearly many of the Mito Specialists don't want to confirm Mito without a gene. First,it will help identify future drug trials and treatments. Second, who wants to diagnose a child with a disease with few treatments and not curable? I suspect some of the Specialists probably have guidelines also set up by their hospital systems, or with Labs or pharmaceutical companies- everyone needs to make a buck.

It stinks to go without a confirmed diagnosis, but a diagnosis of Mito is worse.

Without a gene, we have hope, which is harder to have with a confirmed gene mutation diagnosis. (Depletion is genetically confirmed,but without a gene possible to be secondary)

There are some major difficulties for families without a confirmed diagnosis- Public School, SSI, insurance coverage. Been there with the Public Schools. I can understand their resistance. All of the extra services a special needs child needs under the law eats up an enormous budget. I have now heard of many people hiring Attorney's to navigate the Public School systems. Which horrifies me on a couple levels. 1) That the school system to going to such lengths to block assistance to children. 2)What about families that cannot afford an attorney? 3)If you can afford an attorney, maybe you can provide and pay for some of the needed medical care instead of the tax payer. There I said it, I think services through the Public School should be based on a sliding scale. Then those with the ability to pay for their children's medical interventions do, while those who cannot will get help. We already set up Medicaid like that for the most part, though Medicaid does have some loopholes.

Instead of fighting the school district we pulled Abby. Protected her energy, protected her from infections and provided more academic challenge. I think the straw that broke the camel's back was that last year in High School. So many Dr.s encouraged us to "push her" that being in public school was "healthy for her development".. I tried to be compliant. The School District wasn't supportive, no formal diagnosis, and she at the time was "invisible" for her disability, though that year stole enough from her body, by the end of the year it had made her disability very visible. Here is an example of how wasteful the school district is with their money. The Bus stop was far away from our home, but on it's route it literally stopped less then a 1/2 block from our house at a stop sign. The Bus however would not allow Abby off there. We went to the school and pushed for a 504 to A)get her a locker(only juniors and seniors got lockers) and B) to get the bus driver to open her door for 30 seconds for Abby. Well, they refused to give Abby a locker despite Drs. notes from her Orthopedic, Primary, stacks of documentation. It would not be fair to take a locker from a Junior or Senior- ha. For the bus? They said their contract with the bus prohibited changes to the route. But, they could provide a special van for front door pick up and drop off. Nice, however here is the kicker, they did not have a van that could go to our house. So, they would have to pay for a special van and driver just for Abby- Surely that would cost the taxpayers 10's of thousands of dollars instead of simply opening the door. We were horrified! Granted, we have paid our share of taxes, but just that bus and driver would eaten every single dollar plus some of what we have paid in during our lifetime. We were mortified. How could we as taxpayers justify such extreme waste and spending of our neighbor's hard earned dollars? How many kids would not get a service because we allowed the school district to waste insane dollars on one kid? We felt strongly that even if the school district was willing to waste your money we could not. It still makes my stomach turn to think that if they were willing to be so wasteful with Abby, how many millions of our tax dollars are being thrown away so frivolously? We said no thank you. We couldn't and wouldn't ever be able to sleep knowing that we were part of the huge abuse in our government when we could afford to resolve the issue out of pocket without hurting other needy children(we weren't in a good financial place at the time, struggling to pay the bills, but we could at least pay the bills). We still feel disabled doesn't mean we are entitled to services, it just means as parents it costs us more, but if she were a talented Olympic athlete it would cost us more out of pocket, so no difference to us she is our responsibility with all the good and the bad. The question is; if Abby had her Mito Depletion diagnosis, would that have happened? Probably still a battle since Mito isn't exactly in any of the schools written guide books, but perhaps would have provided more ease and less waste.

For years without a diagnosis we got very little help or compassion for Abby. We were met with resistance and I nearly lost my mind trying to advocate and care for her. The Drs. visits after the depletion was found? Very different, and very unsettling. Suddenly everyone realized that they were wrong about Abby, that we were very right and there was clearly something very wrong. Compassion blossomed. It felt very foreign to us to have that feeling- Abby and I actually did not know how to handle that.. we were used to preparing for battle each and every Dr. visit.

Once you have a diagnosis Drs. treat you differently, because protocol dictates that- and it is not always a good thing just like being treated differently because you don't have a diagnosis is not always good. Abby developed GI issues post Depletion diagnosis. We took her to a GI who had experience with Mito patients- he treated Abby like she was a goner. He was clearly in shock that she did not have a tube, that she did not have a specialist team waiting in the sidelines for her eventual decline.. We left that appointment in a red hot panic! I promise you, had we gone in without a diagnosis, we would have gotten much much different treatment(I have heard from many parents that their teens without a Mito diagnosis are frequently diagnosed with anorexia or other eating disorders). Odds, are neither would have been right for Abby. The "diagnosis" can cause as much damage as no diagnosis. Whether you have a confirmed diagnosis or not- there is no one size fits all. If she did not need a tube without a diagnosis, why would she simply because she had a diagnosis? Each patient is individual. We ended up seeing a new GI who did not see patients based on their diagnosis or lack of diagnosis, but based on what the problem was- worked much better!

However, looking back if I had to chose- 1) have a diagnose or 2) not confirmed but door open for other diagnosis then Mito? I would take the "suspected" "not confirmed" in a heart beat. Though, even if she had been confirmed at the time, we would have still said no to the District wasting your tax dollars. But having a confirmed Mito diagnosis forces you into a box of what Drs. think you need based on Protocol. That doesn't work for Abby. Having a depletion without a gene leaves the door open a crack for us to find a primary as the cause of the depletion. We are hopeful that the Mast diagnosis fits her- it could explain the depletion because it could have caused the poor nutrition which could have caused the depletion.

Right now, only a couple Drs. can manage to see both the Depletion and Abby. Her Mito Specialist recognizes that each Mito Patient needs their own treatment plan which can vary wildly patient to patient even with identical mutations.. Maybe 10 years from now even family Drs. will understand that.. but for now we grit our teeth, and wonder if maybe doing battle each appointment was safer then the "Protocol" some Drs. jump to follow.

As Abby has more gene testing, we are starting to wonder how we will handle it if they find a mutation somewhere that confirms everything- I suppose like we do now- we follow the "Abby protocol" and not the "Mito Protocol" and a gene found won't change that.. but I wonder what new problems come with that? Abby doesn't want a star on her belly nor do I. Sure, it would make getting by easier, but since when is life easy?

Thursday, September 6, 2012

Instead of Raisin and Cinnamon, Figs and Spice!

Abby used to adore raisin cinnamon bread in the good ol days. A couple weeks ago I made a loaf of it for her sister and she looked with such longing at that bread.. Of course part of it is the smell, something beyond divine about the smell of raisin cinnamon yeast bread baking.

Yesterday we decided to make an Abby Safe version. Turned out terrific, filled the house with that rich, sweet and spicy smell. We used figs and other spices instead of raisin and cinnamon. We of course also went gluten free. Since I was tweaking a recipe anyway, I threw in 3 eggs for extra protein and calories, and 1/4 cup of rice protein. We try hard to stick to our Motto of "eat what you want, as long as it has nutritional value tied in." The best part of this loaf was that Abby was feeling pretty good and it was great to have her feeling well enough to mess around in the kitchen.

For the record, this morning this bread made amazing french toast! :-)

Abby's Fig and Spice Bread- Gluten free.

1 1/2 cup water
3 Tablespoons grapeseed oil
3 eggs
3 cups GF flour
3 teaspoons Guar Gum
1/4 cup rice protein
6 tablespoons sugar
1 1/2 teaspoons salt
1 teaspoon allspice
1 teaspoon nutmeg
1/2 teaspoon ginger
1/2 teaspoon cloves
2 1/2 teaspoons yeast
3/4 cup dried black mission figs(diced, stewed in micro or to a boil on stovetop)
Directions: 1 Add all the ingredients in order given except the raisins. TIP: Gluten free flours vary, if the dough looks thicker then brownie batter, you can add additional 1/4 cup water.
2 Add stewed figs in on the "add in" beep. Works well on gluten free setting- 1.5 pd loaf, and I always hit the darkest setting with most gluten-free loaves.

Optional- Glaze- corn-free powdered sugar, vanilla or other flavored extract, and water or milk. The glaze wicks nicely into the loaf, a benefit of using gluten free flours, they absorb much better.

Wednesday, September 5, 2012

Junk DNA? Probably not.

'Occupy' comes to DNA: A genome for the 99 percent

Via Reuters

* 'Junk' DNA runs the genes, $196 million international study finds

* Project offers 'guidebook to the human genome'

* May transform personal DNA analysis, drug discovery

By Sharon Begley

NEW YORK, Sept 5 (Reuters) - In the largest single batch of discoveries about human DNA since the completion of the human genome project in 2003, 442 scientists in labs across three continents released 30 studies jam-packed with finds on Wednesday.

The discoveries, representing what the journal Nature calls the "guidebook to the human genome," range from the esoteric - what is a gene? - to the practical - that just 20 gene switches may underlie 17 seemingly unrelated cancers, giving companies a workable number of drug targets.

The studies come from a $196 million project called the Encyclopedia of DNA Elements, or ENCODE, whose goal is to take the babel produced by the human genome project - the sequence of 3.2 billion chemical "bases" or "letters" that constitute the human genome - and make sense of it.

"We understood the meaning of only a small percentage of the genome's letters," said Dr. Eric Green, director of the National Human Genome Research Institute, which paid for the bulk of the study.


ENCODE was launched in 2003 to build a complete "parts list" for Homo sapiens by identifying and pinpointing the location of every stretch of the genome that does something - "a reference map of all the functional elements in the human genome," said geneticist Joseph Ecker of the Salk Institute for Biological Studies in La Jolla, Calif.

The best-known elements in the genome are the 21,000 or so genes that specify what proteins a cell makes. The dopamine gene makes dopamine in brain cells, for instance, and the insulin gene makes insulin in the pancreas.

Only about 1 percent of the genome codes for proteins, however, and the challenge has been to figure out the function of the other 99 percent, which for years was termed "junk DNA" because it did not code for proteins.

The ENCODE scientists are biology's version of the Occupy movement, said Mark Gerstein of Yale University in New Haven, Conn., who led one of the ENCODE teams: "For years everyone focused on the 1 percent. ENCODE looks at the 99 percent."

In examining the overlooked part of the genome, the ENCODE scientists discovered that about 80 percent of the DNA once dismissed as junk performs a biological function. Primarily, the not-so-junky DNA constitutes the most sophisticated control panel this side of NASA's, with some 4 million bits of DNA controlling all the rest.

"The 'junk' DNA, the 99 percent, is actually in charge of running the genes," said Gerstein.

This regulation can influence both normal genes and aberrant ones, affecting the likelihood of disease.

That's because "transcription factors" and other regulatory elements - proteins made by this controlling DNA - hopscotch across each cell's double helix, binding to it in a way that turns genes on and off or up and down like a toddler who has just discovered light switches and dimmer dials.


The power of the gene-control elements may explain why simple personal DNA sequencing sometimes concludes that people are at risk for diseases they never get or misses the warning signs of those they do develop. If the switches quiet an unhealthy gene, "it might reduce levels of proteins that have some nasty effect," said Ecker. But if they mess up a normal gene, then someone can develop a DNA-based illness nevertheless.

How complicated is the genetic regulatory system? There are nearly 4 million gene switches in the major human organs, with about 200,000 acting in any given kind of cell, such as in heart muscle.

"Our genome is simply alive with switches: millions of places that determine whether a gene is switched on or off," said Ewan Birney of the European Molecular Biology Laboratory-European Bioinformatics Institute and one of the leaders of ENCODE.

The gene-control system means drug companies may have to look in new locations for influential genes. In one paper, scientists at the University of Washington in Seattle found that most of the DNA variants previously linked to 400-plus diseases lie in regulatory regions often far from the "disease gene."

"Disease-associated genetic changes are concentrated in the switches," UW's John Stamatoyannopoulos told the press briefing.

As a result, genome analyses that look for glitches only in "diabetes genes" or "cancer genes" or any other "disease genes" are likely to miss those that cause disease by changing when, where and how genes are turned on.

That discovery "will change how we understand the genetic basis for disease and open up new avenues for therapy," said Stamatoyannopoulos. For instance, in 17 very different cancers "just 20 regulatory factors turn up over and over," he said. That suggests that drugs targeting only those, and not the hundreds of targets drug companies are now pursuing, might treat many cancers.

ENCODE may also simplify the search for therapies for Crohn's disease. Genetic studies have identified about 100 places in the genome that affect a person's risk of developing the autoimmune disorder, way too many for drug companies to investigate, Birney said. But only a handful of transcription factors control those regions, presenting a workable number of targets by which to silence disease-causing DNA.

The UW group also found that some seemingly unrelated diseases share regulatory circuitry, including rheumatoid arthritis, type-1 diabetes, lupus and other autoimmune diseases. That suggests that one drug might be effective against all of them.

With ENCODE, said Stamatoyannopoulos, "we're exposing previously hidden connections between diseases."

ENCODE has also shown that a gene is not the simple stretch of DNA that makes a protein, as students are taught. Instead, the functional unit is an amalgam of sequences from both strands of the double helix, interleaved like two halves of a deck of cards in the hands of a Vegas dealer.

Nature is making all of the ENCODE research freely available, at www.nature.com/encode and through an iPad app. (Reporting by Sharon Begley; Editing by Julie Steenhuysen and Douglas Royalty)

The Non-Compliant "Mom"

The more I talk to Mom's who have children with difficult to diagnose chronic illnesses the more I see that this group of Mom's rarely get the medical treatment we need either.

The other day I was reading a transcript of a Dr. Afrin presentation.

One of the comments he made really sank in, he said that often the patients he has quit reporting symptoms and health issues to their Drs. many years ago. Often because their primary Drs. either did not believe them, or could not find in lab work what was wrong. These patients just got tired of advocating for their health needs when they were met with constant resistance.

In my mid- late 20's my health started to really become an issue. At the end of the day, whether they believed me or not the lab work is what talked, and mine said I was pretty healthy. Since then I have tried a few half hearted attempts to bring up my own chronic issues. I get have gotten the following remarks/responses from Drs. and so have many of my Mom's-

1) Have you tried losing weight?

2) Maybe try a nap?

3) How about more fruit? (seriously!)

4) Try yoga, if that doesn't help your only option is anti depressants(a couple different Drs. in a couple different states!)

5) You are just stressed, just learn to relax.

6) Are you having martial issues? Lots of women feel like you do when their husbands aren't spending enough time with them(and Yes, this came from a female Dr. educated in the last 2 decades!)

7) Classic depression, you don't need lab work, it is all in your head.

8) Let's give it some time, that joint swelling will go away on it's own.

9) Does your husband think you have been unwell?

10) You just need a career, women are happier if they work(from the Dr. with no children)

As Mom's of children with difficult to diagnose health conditions we see how difficult it is to get our children the help they need, and when our issues aren't as bad we know there is no hope.

On the boards I have been shocked by the number of issues many of us refuse to go to the Dr. for treatment. Many of us apparently have experienced the same Drs. :-)

I know a few of us giggled about canceling Dr. appointments because we were "too sick" to go. I reckon, it gets to the point where you lose faith they can provide answers to what we live with daily, the flu, an infection can be ignored or treated for 60 bucks at the CVS quick stop.

Now, my oldest is having some issues- granted, not as bad as Abby- but bad enough. She doesn't know how to advocate for herself, since I never taught her. She figures the Dr. would just blow her off, because after all, Abby is so sick and we still get the blow off on occasion. I have not set a good example. After a year, she finally said something with our coaxing..

We actually do have a great family Dr. right now. But, I think we all want him to save his energy for Abby, we don't want to burden him with issues that may or may not show on labs, even a great Dr. has limited patience. Great Drs. have far more patients, and I worry they will burn out...if the rest of us can find our answers by googling, we are doing are part to put Abby first.. she is a most challenging final exam.

At the same time, all our efforts have not ferreted out much treatment for Abby, so why go to the Dr. to just have someone other then us acknowledge? We are realists around here, and over the years the stuff I suffer from clearly won't kill me, just makes me miserable.. I kind of see why so many people have issues with food or alcohol- self treatment for many with chronic issues that science hasn't caught up with yet.

I am learning that despite huge advances in medicine- somethings are just not treatable, or the treatment causes other issues. I am also learning that everyone of us has something we deal with, and what I deal with daily really is nothing compared to many. Many of the Mom's I speak with say the same things.

Funny thing, when we are with a specialist who "gets" it and wants to help our children we will pour out every symptom 12 generations back, ANYTHING to help our children- the minute you make us the patient? Nope, we are just fine.

So, are we really non-compliant Moms? No, just stronger, smarter and tougher. I am almost glad I have gotten the blow off so many times. I have no choice but to suck it up and keep moving, it may be miserable but what other options are there for anybody? No matter what anyone faces you can either deal with it and move forward, or sit and stew.

My one determination in this family legacy of misery, is for Abby and Sara to have a name for the enemy. I don't want them to feel they have suffer silently, like many of the Mom's do- fingers crossed, science catches up! Would be nice if my daughter's felt they can go to the Dr. when they are sick! LOL :-)

Tuesday, September 4, 2012

Herding Toads

(LINK to animal planet information on Toads)

This summer we have had evening visitors under our porch light. As dusk falls, 1,2 and sometimes 3 big old toads come out to help control the bugs. I really don't mind having them around at all, they are great bug traps! But Evie our poodle finds them irresistible.

As dusk falls, she takes up watch at what we call the doggy TV. She sits in front of the back door(french door so glass at her level)and watches intensely. As the light fades and the toads start populating the deck, Evie starts telling us about it! She has quite the vocal ability and the fussing and whining she is able to create really sounds like some language- of course we know the translation " Get off your butts, it is time for me to herd toads!"

As she pounces out the door to go play with her "friends" we all warn her, Evie Icky! Ha, she never listens. IT always starts out well.. she runs in circles around them and charges them to watch them hop.. she will herd around them all trying to get all her friends in one location.. eventually one of the toads makes the mistake to try playing dead or just sitting still- I guess if figures if it doesn't move she won't be interested. Ha! She cannot wait until the game gets to that point.. she will start talking to the toad, and dancing around it, she will even do the puppy butt with her back end up like a young pup playing with litter mates.. If the toad still doesn't move it is time for the swipe! She will whack it with her paw- usually too hard, but I think innocent enough at this point, she just wants it to move! Once in awhile, it will take progressively harder and swifter whacks with her paw, while we scream at Evie saying "be nice!".. eventually the toad gets it head together and realizes escaping is it's only option. About once a week, despite our fussing at her and warning her, she cannot resist and goes in for the bite! We all know what happens next.. She foams, and gags, and throws up.. I rinse her mouth out with the hose.. she then goes inside and sulks..usually she stays away from me, like I am the one that caused the outcome...
The next evening she is ready to herd toads again.

Why won't she learn? She is a shockingly smart dog, but there is something so irresistible to herding toads and the dangerous way it often ends...

Does she think if she does it enough the ending will change? That eventually one of the toads will taste good? Or is the process of herding toads worth the negative outcome?

I find that I probably do a lot of toad herding myself. I find myself repeating the same behaviors over and over again. Sometimes I recognize that I am doing something that is going to have a negative outcome and am willing to take the bad taste for the process(aka eating cake!)Sometimes I don't realize I am repeating a negative behavior and have just accepted the negative outcome.

Then there are times when I herd my toads on purpose with a plan. Abby and I have been messing with chickpea nufu weekly. So far any of the weird things we have done to the block from straining it, to cooking it and pressing it, to mixing it with different fats,proteins,starches has not given us the outcome we want.. But, we are aware we are herding and modifying our technique to change the outcome(one day hopefully!)

Evie isn't dumb. Nor am I, but there are days when I really wonder why we keep herding toads! :-)

Sunday, September 2, 2012

Side Effect of Clean Eating.

Abby's diet changes have done wonders to stabilize her. She was able to leave the house twice this week. She has stopped losing weight. Best, she feels better. Is she cured? No. But, simply finding her the right fuel has done wonders. If I could possibly capture her improvements on film as I did with mine, hers would be as dramatic if not more so.

When Abby was struggling this winter, I was forced to look at myself. I had been eating my way through my emotions and stress over her health instead of working through them. I had that moment of how can I radically change what she eats, and eliminate everything that was a comfort food for her, yet keep abusing my own body?

Dramatic visual of clean eating. I too changed my diet to look at it from a more mechanical viewpoint. Food needed to be fuel, not pleasure, not social- just fuel. If I truly loved Abby and myself I needed to be there with her making difficult changes too.

Somehow, it eased my stress to be a part of project elimination, and I know it helped her not feel so alone, different or alienated from our normal in our home. Frankly, I needed it.

I don't really see skinny vs chunky when I look at this picture, I see a Mom who decided the best way to support Abby to eat the right fuel, was to set the example.

It is a struggle everyday. I want McDonalds, pizza, shoot, a pack of oreo's.. a bag of chips, some bread in a bag...and every time I see a kraft mac and cheese commercial I start to drool! I miss them terribly. Then I look at Abby and feel ashamed- she will never be able to eat commercial food again.. she takes such joy in the new flavors I have introduced and has worked so hard to fuel her body properly- knowing that every chip or slice of pizza I eat, is something Abby will never be able to eat again and she has handled the loss of "Western" food with such grace, it keeps me clean.

Derek and Sara too have been working on seeing food as fuel. They have enjoyed the food trials and new flavors we have brought into our home.

As they say, every cloud has a silver lining. Abby's illness has radically changed our views on food, and life, and family. I will do anything to help Abby and I now have the "visual" to prove it. I wish it got easier, and hope it does.. this is a huge change in our lives that we now need to embrace. I am so proud of my family,we all have gone the extra mile to set a good example and support Abby. There is so little we can do, but tackling the chemicals, processed foods, that are making a lot of American's fat and sick- we can and have done it.

Now to keep it up. I don't want to go back to where she was ever again. If our changes in food can prevent it, or even slow it, then it will make it easier to stick with it.

Saturday, September 1, 2012

Second time is the Charm, so we Hope!

Yesterday Abby had to do a bunch of lab work. She surprisingly was having a decent day on a day where something was planned- we were double surprised because she had a Dr. appt Tues, and to have it together on a Friday that soon? Very happy.

Derek took her on his lunch hour.. quickly I get an email- "Lab won't do the blood work wrong codes". Did I mention she also had a 24 hr urine in hand?

Finally, he had them call the local family Dr. so they would at least process the urine. They ended up coming home to sort it out, at least they took the urine :-)

By 2pm the Dr. who ordered the lab work got ahold of the lab. Like we suspected, the Dr. had filled everything out correctly.

Derek decided they were going to get this done today no matter what. So, he zipped back from the office(I offered, but he had a desire to finish this) and grabbed Abby.. by this time Abby was at the stage of still feeling pretty good, but one look at her face and I knew a big ol crash was coming, I was just hoping she would hold until she got home.

Pretty soon I get a text.." They won't do it wrong codes".. Seriously? He had the email about it from Drs. office that he pulled up on his phone.. and FINALLY the Manager of the Lab came over and after awhile figured it out.

They get home and Derek said he is pretty doubtful they got much right, they were having to ask each other how to label the vials..

Our hope is that if they did not test for what they should, that whatever they do test for is helpful! LOL

The minute they walked in the door Abby just looked awful. I got her to drink and eat before the crash hoping she would bounce- Ha! She said she did not feel too bad, so I was hoping. Within two hours she was in horrid pain. Wobbly legs, GI flared, and kind of yellow- she usually doesn't turn yellow so that was definitely something unusual. I haven't seen her yet this morning so I am hoping she got some good rest last night. While she was at the Lab I changed her sheets and cleaned her room - so that always helps her sleep.

Derek and I were so upset about the Lab messing up, we know Abby has serious limited energy.. we ranted and raved together, and had to breath deeply and remind ourselves that the rest of the world also has to deal with these situations.. tired Seniors, patients fighting cancer, and zillion other energy stealing diseases.. but in our concern for Abby it is often hard to remember that though we think she is very special and deserves special treatment, well we are just the same as any other patient who the lab messes up with :-)

As they say, "IT is what It is."

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