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.

Monday, January 28, 2013

Miralax is DANGEROUS!

Last year I posted about how sick this product made Abby and many others. How it is dangerous for Abby and my "gut" is betting it is dangerous for many. Drs. are still claiming it is perfectly safe. It is NOT. It makes my stomach turn to think that Miralax is the first chemical many parents are told to give their children who have Mast, Mito, autism the very populations that are more likely to react badly(since these populations tend to have a higher rate of reactions in general)

Please read the article below and consider speaking to your Dr about finding an alternative that might be safer.


Homemade Honey Grahams Cold Cereal(Gluten free, dairy free, soy free, egg free, nut free, seed free, corn free)

Months ago we figured out how to make granola without oats(another allergy), but granola though a delicious cereal isn't that wonderful junkie stuff in a box.

Finally, I decided instead of missing it, we'd just make it!

I used my graham cracker recipe from a few days ago. In my recipe it called for both dark brown sugar and honey. For the cereal version I removed the brown sugar and substituted an equal amount of honey. I also increased the water by a tablespoon or two in order make it more like a soft cookie batter.

We played with a few different piping tips, and came up with a fun blend of shapes.

What we discovered, if we baked them as the recipe directed and then finished them off in the dehydrator for a couple hours(high temperature) we ended up with a light, crisp cereal!

2 cups gf flour(higher protein flour blend is better)
1/2 cup MLO Rice protein powder(corn-lite at best,Abby has not reacted but untried by allergy community. This particular rice protein tastes like graham flour-Ideal for this recipe you could skip this ingredient and simply increase gf flour to 2 1/2 cup)
1 1/2 teaspoon baking powder(Hain's)
1/2 teaspoon baking soda
1/2 teaspoon salt(pink himalayan)
2/3 cup good quality raw honey(make sure you know your keeper! Some bee keepers feed their bees corn syrup or honey has been found to be cut with corn syrup!)
3 Tablespoons palm shortening(spectrum)
2 Tablespoons(cold)coconut oil
1 teaspoon vanilla extract(homemade with potato vodka and vanilla beans)
4-6 Tablespoons cold water.

Preheat oven 325

Parchment lined cookie sheets or well greased cookie sheets.

Mix flour,rice protein, baking powder, guar gum, baking soda,baking powder, salt,in large bowl. Cut into flour palm shortening and coconut oil(like making a pie crust)

Once the fats are well cut into dry ingredients(pebble size like pie crust)add raw honey, vanilla extract and enough water to make a soft cookie dough.

Fill piping bag with dough. I found using a larger sized tip worked great. What we learned was you want your cold cereal cookies flat as possible they will crisp better in the oven, and dry better in the dehydrator.

Bake for 15-20 minutes until golden brown. Place in dehydrator(I used a high temperature) for aprox 2 hours. We noticed they felt a little lighter and were more crisp.

Store in airtight container.

NOTE: The dehydrator cereal gets VERY crunchy, we find it is best to let them sit in the milk a bit to soften them up before trying to inhaling them.

Saturday, January 26, 2013

Valentines Pom A Roon's(gluten free, dairy free, corn free, soy free)

Basically Macaroons!

But I used Pomegranate syrup to tint them a pretty lavender. You could use honey, maple, blueberry syrup whatever you have on hand. These are such an easy cookie to whip out fast. If you opted not to use a cookie cutter to create a shaped cookie, you can just scoop with a spoon and press the dough firmly so it is packed in the spoon.

3 cups shredded coconut
1 teaspoon homemade vanilla extract(almond is more traditional if you tolerate)
1/8 teaspoon salt(pink himalayan)
2/3 cup pomegranate syrup( I made a simple syrup and added pomegrante juice I squeezed, but you could buy a pre made syrup, or if not corn allergic you could use the POM brand juice)
4 egg whites
1 teaspoon cream of tartar

Preheat oven to 350 degrees F.

In a medium bowl, combine coconut, extract, and salt. Stir in Pom Syrup until well combined.

Beat egg whites until stiff peaks form. Fold into coconut mixture along with cream of tartar.

Scoop mixture carefully into a cookie cutter heart and press the dough firmly unto a greased(parchment paper worked great!) cookie sheet. Really pack the coconut into the cookie cutter. Carefully remove the cookie cutter gently working it off. Bake for 10 – 15 minutes, or until lightly browned.

Cool cookies on cookie sheet.

I thought about figuring out a garnish or icing, but the tang of the pom and richness of the coconut stand alone just fine! If you tolerate chocolate you could dip halfway in melted chocolate for an extra sweet valentine's treat.

Nofu Star Anise Maple Ice Cream(dairy free,soy free, corn free,gluten free)

I had picked up a bag of star anise at the Indie/Paki store, but though I am sure I have eaten something at some point with it, I had not cooked with it myself. It is a strong flavor that is very "licorice". I ran across a recipe for a delightful looking dairy based mousse that combined maple and star anise. I was intrigued!

Mousse is difficult for me, without dairy. We are HUGE fans of ice cream. I will admit, I have never thought of ice cream as bad for you as say a donut. Dairy has a lot of value. Making coconut ice cream we realized she wasn't getting enough nutritional value to classify it as anything other then junk. So we fixed it. We have started adding a cup of pureed chickpea nofu. To our delight, the flavor is rarely noticeable and it adds hidden depth and richness. Admittedly, depending on your nofu, it can also add a bit of grittiness,but nothing that destroys the wonderful flavors and great texture. I would think if you are a soy tofu fan, that using silken tofu would work well.

You could use whatever ice cream base you like and simply throw the star anise in to flavor it while heating your "milk". Below is what we did. The whipped egg white did offer a lighter and smoother end result, but I did it to combat the weight of the chickpea nofu- so you could easily skip that part and still get a terrific flavor. My star anise flavor was a very subtle flavor in the finished ice cream. You tasted it, but with the maple it really did create a whole new flavor profile that would keep you guessing if you did not know star anise was used.

1 cup fullfat coconut milk(just the firm cream on top is preferred for extra creaminess)
1 cup chickpea Nofu(or soy tofu)
2 eggs separated
1/2 cup sugar
2 star anise pods
2 tablespoons grade B maple syrup(much stronger flavor then grade A)
dash of salt.
vanilla extract(if almond is safe for you it would be perfect)

Extra maple syrup to use as a topping.

On stove gently heat the coconut milk with the star anise. You don't want it to boil but you want it be close to a boil for at least 10 minutes to get that nice anise flavor. While it is warming, beat 2 egg yolks with maple syrup. After the coconut has heated you can go ahead and temper your yolks with the maple and slowly add. Cook for another 4-5 minutes being careful not to boil till it begins to cling to your spoon. Remove star anise pods(discard them) and place in the fridge.

combine the two egg whites with 1/2 cup granulated sugar. Place in heat safe pyrex bowl over a simmering pot of hot water. Stir and heat until the sugar is completely melted. Remove from heat. Whip until soft peaks.

In blender place 1 cup of your chickpea nofu, dash of salt and the coconut milk that has been in the fridge. Blend well until smooth. Add a dash of vanilla extract or almond extract.

Fold in your whipped egg white and sugar until well mixed. Place in Fridge to chill completely. Once chilled follow the directions for your ice cream maker.

NOTE: The full fat coconut milk is key to helping the ice cream remain smooth without as much ice crystals, and homemade vanilla extract has a higher alcohol content, alcohol helps prevent ice crystals too.

Star Anise is a very "STRONG" flavor. I recommend tasting the coconut milk as it heats and removing the anise pods at any point you feel the flavor is strong enough. The Maple will change the flavor and create balance. I have had a batch that was too strong of an anise flavor and simply added another tablespoon of the strong maple syrup to balance it back out. Also keep in mind, usually flavors mellow significantly when you freeze them.

Pigeon Peas

I have days where I do a lot more reading recipes then cooking them. Seems like each time I discover some new ingredient with which I am not familiar. Or an ingredient I have eaten but never prepared for myself. That triggers finding out about the "new" foods nutritional value, how to prepare it, whether is a common allergen and finally if the food has been used holistically.

Recently I have noticed "pigeon peas" in many of the African,Indian, and Puerto Rican recipes I have been salivating over.

From what I can gather, the dried or canned pigeon peas are used in a similar manner as any other bean or lentil. Ground to flour, or soaked or even fresh if you can find them, the nutrition profile on this little pea is impressive. It is a "drought" hardy crop and is gaining popularity for how easy it can be grown. Unfortunately it is very frost sensitive but some Southern gardeners are growing them as an annual.

The pigeon pea is nutrition packed for sure! Magnesium,B vitamins,C,K and potassium. Lots of great fiber. The fiber means extra caution for sensitive GI tracks. I will likely introduce this by grinding to flour, and then cooking. Of course the more you cook and break down a food you are depleting some of it's value, but better a little then none. I wonder if I can find some fresh somewhere in Houston? Until then I will check the Indie/Paki store and Asian market. I went ahead and ordered a bag dried pigeon pea's until I can locate them locally. From what I have read they are more widely available canned then dried or fresh but we try to avoid canned food so dried for us - if we find a great recipe for these, I will be sure to share!

A bit of information from San Francisco Chronicle

Pigeon peas, a popular vegetable in tropical countries, are healthy and versatile. Ripe pigeon peas are a common ingredient in dhal, an Indian split-pea soup. Immature pigeon pea seeds, also called green pigeon peas, are reputed as an old folk medicine remedy for liver and kidney ailments, according to Purdue University, but they offer real health benefits today. They are a nutrient-rich addition to rice or a variety of other foods and can supplement your diet with protein, fiber, vitamins and minerals.
Calories, Fat, Protein and Fiber
Green pigeon peas are moderate in calories and high in nutrients. Each cup of cooked green pigeon peas has 209 calories, 11 grams of protein, 2.5 grams of fat and 8 grams of fiber. If you are trying to lose weight or increase your fiber intake, you can get more benefits from eating them raw. A cup of uncooked pigeon peas provides only 170 calories, 9 grams of protein, 2 grams of fat and 9.5 grams of fiber. The cooked version is higher in sugar, with 4.6 grams, compared to 3.8 grams of sugar in raw green pigeon peas.
B-complex Vitamins
Green pigeon peas benefit your ability to metabolize food. They contain a wide array of B-complex vitamins that help your body turn fat, protein and carbohydrates into energy. Each cooked cup provides half the thiamin and one-fourth of the riboflavin and niacin you need each day. They also contain 36 percent of your daily requirement for folate and 6 percent for vitamin B-6. When pigeon peas are cooked, some of their water-soluble nutrients are depleted. For that reason, a cup of raw green pigeon peas provides nearly twice as much folate as its cooked counterpart, giving you 63 percent of your recommended daily intake for that B vitamin.
Vitamins C and K
Vitamin C is an important antioxidant that benefits your cells and immune system. The Institute of Medicine recommends that men get 90 milligrams of vitamin C per day and that women get 75 milligrams. A cup of cooked green pigeon peas provides 43 milligrams of vitamin C, but since it is a water-soluble nutrient, a cup of raw green pigeon peas is significantly higher in vitamin C, with 60 milligrams. Pigeon peas are also rich in vitamin K, a nutrient that ensures proper blood clotting, protecting you from bleeding disorders. A cup of pigeon peas, cooked or raw, gives you more than 100 percent of your daily requirement for vitamin K.
Essential Mineral Benefits
A cup of cooked pigeon peas provides one-fourth of your daily requirement for bone-building phosphorus and one-fifth for muscle- and nerve-protecting magnesium. It gives men one-third of the iron and one-tenth of the zinc they need daily. Women need more iron and less zinc, so the same serving size provides women with 13 percent of the iron and 15 percent of the zinc they should get each day. A serving of pigeon peas also gives you one-seventh of the potassium you need daily, with 698 milligrams of this nutrient that helps your body maintain a healthy balance of water and promotes proper nerve function. Cooking pigeon peas depletes them of some potassium; a cup of raw pigeon peas has 850 milligrams of potassium.

Friday, January 25, 2013

Graham Crackers(gluten free, dairy free, corn free)

Not pretty! :-) My family is resigned to the fact that I focus more on flavor then looks! But they taste delicious and with practice I might get better at making a more attractive cracker. However, despite their sad appearance, these turned out really tasty!

2 cups gf flour(higher protein flour blend is better)
1/2 cup MLO Rice protein powder(corn-lite at best,Abby has not reacted but untried by allergy community. This particular rice protein tastes like graham flour-Ideal for this recipe)
1 teaspoon baking powder(Hain's)
1 teaspoon guar gum(Abby is soy lite- guar gum is soy contaminated,but tiny amounts when she is not reacting doesn't seem to trigger her.)
1/2 teaspoon baking soda
1/2 teaspoon salt(pink himalayan)
1/3 cup packed dark brown sugar(Domino's)
3 Tablespoons good quality raw honey(make sure you know your keeper! Some bee keepers feed their bees corn syrup or honey has been found to be cut with corn syrup!)
3 Tablespoons palm shortening(spectrum)
2 Tablespoons(cold)coconut oil
1 teaspoon vanilla extract(homemade with potato vodka and vanilla beans)
3-5 Tablespoons cold water.

Mix flour,rice protein, baking powder, guar gum, baking soda, salt,dark brown sugar in large bowl. Cut into flour palm shortening and coconut oil(like making a pie crust)

Once the fats are well cut into dry ingredients(pebble size like pie crust)add raw honey, vanilla extract and enough water to make a soft dough. Mine did not come into a ball, but was like a very thick and crumbly. Cover tightly and place in fridge till chilled (at least 2 hours).

Preheat oven to 325

Divide dough into quarters.(any quarter you are not using should go back in the fridge) Between sheets of parchment paper roll out to 1/4 inch thickness. Using knife or pizza cutter cut into squares and pierce with fork. Place each square on a parchment lined cookie sheet. Bake for 15-17 minutes till golden brown, they will still be soft and as they cool they will get crunchy. We liked the ones that got more brown best.

NOTE: This dough was best to work with ice cold. I found it got very difficult to work with as it got warm. By the time I was ready to move the pieces to the parchment lined cookie sheet I found they were not firm enough, which explains my oddly shaped and messy looking crackers :-) Be prepared to roll, and cut quick! I may try adding more flour next time to make it more temperature stable. But, once these were cooked they were worth the hassle of dealing with the dough. Afraid with more flour they would lose some of their terrific crisp texture.

Store in airtight container.

Tuesday, January 22, 2013

Tamarind/Bean Paste Cookie Bars.

It was clean out the fridge day. Often when I am playing with new foods I tend to end up with a fridge full of leftovers and then I have to decide whether to cook with it, freeze it or toss it. To be honest I LOVE clean out the fridge day,because I get to be creative, and not worry about screwing anything up. If it turns out then Great, if it doesn't- no big loss. Everyone stands by waiting to see what in the world I will create on fridge clean out day, you never know if it is going to be some new amazing combination of foods, or a lesson learned!

I had a cup of sweet black bean paste(we love red bean paste and I decided to make my own with black beans. We are trying black beans with Abby and we find any complex fiber food is best if I cook, puree and cook again to help her digest)and a bit of tamarind paste for some reason I had it in my head it would be like a fig puree if I combined to the two. Actually it was tastier! Tangy and sweet and fruity it combined to make a terrific "jam" filling for your favorite cookie bar. If anything it reminded me most of a strawberry/rhubarb pie..

The other day I made the toasted coconut butter and I am desperate to get it out of my house- it was so tempting that I found myself thinking about it before I even had coffee this morning. Often when I have a cookie or pastry recipe I will combine coconut oil and grapeseed or palm shortening instead of just using one fat. So figured the coconut butter is mostly coconut fat so it would substitute nicely for the coconut oil I would ordinarily would have subbed half the oil with for any cookie recipe.

It turned out DELICIOUS! The thought of black beans and tamarind scared me at first too! I can imagine ya'll are shuddering, but I promise it was a great mix! You could use any bar crust you like and simply use this filling with it. We are actually thinking about making a gluten free fig newton but instead of fig for the filling we will us this odd mix. :-) We both thought maybe instead of jam we could use this filling with nofu butter or toasted coconut butter for a quick and very tasty replacement for Peanut butter and jelly.


1 cup sweet red bean paste(canned available at most asian markets) or sweet black bean paste
1/4 cup sugar
1 teaspoon vanilla extract(if Abby could have almond, that would have been perfect!)
3 tablespoons tamarind paste(I use either the block or fresh tamarind. The block of tamarind is just tamarind pulp all mashed into a big sticky block. I use roughly measure 3 tablespoons of the pulp and mix 1 tablespoon of very hot water to it and stir a lot to make it into more of a "paste" vs chunks of sticky fruit.FYI-want for seeds!)

Cookie Crust:

1 egg
1⁄4 cup dairy-free milk (I used homemade rice milk but any "milk" would work)
1⁄4 cup grapeseed oil
1/4 cup toasted coconut butter melted(or increase the grapeseed oil to 1/2 cup instead)
3⁄4 cup sugar(still using domino's)
1 1⁄2 tsp vanilla extract(homemade)
2 cups Gluten Free All-Purpose Flour
1 tsp baking powder(Hain's or homemade)
3/4 tsp salt(still using pink himalayan)

Preheat oven to 350

1. Grease 8x8 pan well.

2. In a medium sized bowl, mix sweet beans,sugar and tamarind well till smooth(as possible,some tamarind bits are fine)

3. In a large bowl, egg, rice milk, grapeseed oil,melted toasted coconut butter, sugar, and vanilla and a mix well until smooth. Sift or add in 1 1/2 flour, baking powder and salt and mix until a loose dough forms. Split dough. Pat 1/2 of the dough into the bottom of your greased pan and bake for 5-7 minutes just to set the cookie crust. To the remaining half of the dough, add the remaining 1/2 cup flour. It should be crumbly.(you can also add an extra dash of salt and a couple more tablespoons of sugar, but did not find it necessary.) If still too doughy, add addition flour tablespoon by tablespoon until crumbly.

4) when bottom crust is set, spoon the sweet bean and tamarind mix over it. Crumble the crumbly dough over the top of the tamarind bean mix. Cook for 22-25 minutes or until the top is golden brown.

6. Remove from oven, and cool. I find if you run a knife around the edge while bars are still hot it makes removing the bars when cool easier.

Reviewing Project Elimination

I cannot tell you how many times in moments of reflection I have wondered if at some point I simply just lost my mind when we created project elimination. In my moments of reflection I wonder if the leap was about denial, or instinct or simply more of an intuitive move on our part. Whatever triggered Project Elimination I am grateful.

Abby's baseline has slowly improved. After each flare in symptoms instead of losing ground she has shown the slightest but consistent gains in her baseline.

"Flares" Before project elimination not only were periods of flares much longer(1-3 months going down)they were destructive and caused her baseline to erode. Now, she will flare for a few days and with rest comes back nicely to her slowly improving baseline.

"Secondary issues"
The kidneys seem to reflect each flare. When she is not in a flare her kidneys are working well with little to no proteinuria. Through food journaling we have found a clear connection between what Abby eats and the function of her kidneys. Safflower oil sent her kidneys into a tailspin that took a couple weeks to figure out that the tiny bit she was getting in the store bought rice milk was causing the reactions. Remove safflower oil from her diet and her kidneys quit throwing protein in 24hrs. Her muscle tone hasn't increased much but she hasn't lost anymore. Her scoliosis/kyphosis has gotten no worse and when she is not in a flare or tired her kyphosis is not noticeable. Her toenails that freaked us out so badly for stopping and starting with growth are now growing at a shocking speed. Her hair is growing back in at a good pace. Her GI issues can be controlled by diet changes as needed for the most part. Though food continues to be a daily focus and needs constant changes as new GI symptoms occur. However, any GI issue she has had we have been able to resolve quickly with simply a change in her diet. Grateful to say, since starting Project elimination she hasn't ever been unable to eat. There is always something that is safe and won't cause her pain or secondary issues. Admittedly, the GI seems to be the core issue of focus still, but no major shutdowns.

Immune: Before she was not getting colds or if she was she was so sick you could not tell. We teasingly say she is going through the newborn stage again. She seems to catch every cold that comes near her. Despite it being annoying, she fights them off in record time and no secondary infections.

With Abby I think we were dealing with a whole bunch of issues that all contributed to the perfect storm. Food allergies, myopathy(depletion), mast issues, poor nutrition- all of them were contributing to a big unique mess. I still think that there was a "cause" for everything and it was not the depletion but still don't have any proof. For this year at least, the Depletion stays with her as a lead contributor.

A year later, I still am undecided as to what to blame. But I am confident that the radical changes in nutrition and environment are the ONLY treatments that have allowed Abby to not only stabilize but to slowly improve her baseline.

Admittedly, I have days where I am frustrated that her health is not improving fast enough. I am TERRIFIED we will do something that will cause her gains to disappear. I wonder too often in the back of my head whether her improvement is a "fluke" and would have happened anyway despite our efforts.

Fact: she is better.

Fact: She has a very long way to go.

Nutrition counts for Abby

Fact: Reducing stress(colds,flus, emotional stress, physical fatigue)has helped as much as the nutrition changes.

FACT: Though we have seen great improvement and speculate more coming, we still are not confident this is a "cure." Allergen removal seemed key when she was a toddler, and proven key again. We see the changes we have implemented as a "treatment" for now.

Abby is unique. :-)

Besides Abby's health improvements Project Elimination has gifted our family time and time again. We prioritize each other first. We all acknowledge that food can and should be the first treatment for any disease. Our priorities have changed.

We speculate that in one more year we will be reporting more improvement with Abby. This is a huge and time consuming method to stabilizing Abby, but not only are we ready for it, but after seeing the gains the first year, we are ready to tackle year two with more energy then ever.

To recap what we did this year:

Removed allergens. (corn,dairy,soy,seeds and nuts,gluten,shellfish are the absolutes,she also reacts to red meats,various fats and a long list of other odd items that we aren't sure whether they are a "trigger" or an "allergen")

Removed chemicals. (No preservatives, no PEG! No food colors, no additives,no MSG, no hormones or medications, - clean and single ingredient or not at all.)

Removed High Histamine(we worked through the list and removed most, though a few like lemon and coconut yogurt and the smallest amounts of Braggs ACV we allow since she has not reacted when used in moderation.)

Focused on rest
(she sleeps at will. She decides whether she is up to leaving the house)

Climate Control. (steady temperature between 70-72 degrees. She shows stress below or above. We also maintain humidity levels -not too high, not too low.)

Removed any medication,vitamin, or supplement
(we finally found a compound pharmacy that was able to create a clean diuretic which she has used as needed. We found one vitamin D oil that she rubs on her skin, we don't trust it by mouth yet. Fortified foods use synthetic vitamins that are corn contaminated. Supplements that would be recommended for her various health issues are also all corn contaminated or contaminated with other allergens for Abby. So far based on bloodwork, her nutrition levels have done nothing but improve once all that junk that was suppose to help was removed. We speculate the issue was that corn is in all of it, but still wonder whether "synthetic" was part of the issue as well)

One of the biggest benefits to this process is that I have found we are not alone. There are many many patients with Mast, Mito,autism and other chronic health issues who have also found that "you are what you eat." They have noticed everything from stabilizing to miraculous improvements when eating a proper and clean diet. Our population of patients who have found that the Western Diet(corn,chemicals crap CCC diet) makes us or our children sick, or at least unable to heal is a growing population.

Right now, it seems eating this way is only recommended when "all else fails". I hope soon it will be recommended first, then medications and medical interventions will become the "all else fails method." If even 3 out of 100 patients can heal,gain relief or stabilize using nutrition first, it should be recommended as a potential treatment to all patients.

Monday, January 21, 2013

Toasted Coconut Butter

Dried coconut shreds(I used Nutiva macaroon shred), a bit of sugar or honey, a dash of salt.

Amazing butter spread. Toasting the coconut shreds adds a complex flavor that you cannot help but love. It has that stick to the roof of your mouth texture like a peanut butter.. Not sure we are going to make this often because we have been hard pressed not to just eat it straight out of the jar!

1 pd bag of Nutvia macaroon coconut fine
1/2 cup cane sugar( or 1/3 cup honey should work fine or other sweetener of your choice)
Dash of pink himalayan salt

400 degree oven.

Large cookie sheet or baking dish.

I spread the shreds out evenly on a large cookie sheet(with sides). I toasted the coconut. About every 3 minutes I would pull the coconut out and stir it to get the toasting as even as possible.

In the Ninja(1100 or better watt)I poured the toasted shreds, sugar and salt. On high I processed. Every so often I would stop and scrape the sides down well. This takes awhile so be patient and just keep blending until it is "butter."

I store in the fridge. It will get hard like coconut oil does. leaving it at room temperature for a few hours or in a hot water bath will soften it. (or zap in the microwave about 5-7 seconds! Melts fast!).

On toast, in place of frosting, as a filling.. or straight out of the jar.

Abby and I think we are going to use this toasted coconut butter and blend it with the chickpea nofu instead of using the premade coconut cream- I suspect the flavor will be better, and the texture of the nofu will help keep it softer.

Friday, January 18, 2013

Have you ever played Yahtzee?

I love that game, always have.

Despite coaching from friends and family over the years I lose more often then not because I "fight" the odds.

You can analyze the probability, the statistics, the most likely outcomes and point out to me that at some point when I am losing I should throw in the towel and scratch out the yahtzee.

I cannot do it. When I play yahtzee I play for the "yahtzee" not for the win. At some point as I scratch out 4 of a kind, then my large straight I realize now I will need to roll not just 1 yahtzee to win but 2 but still knowing I am going to lose, I will turn around and scratch out full house.

Why do we so often look the odds in the face and despite a losing battle, chose to ignore the rational,the logic, the statistics?

For Hope/the Yahtzee.

To me, the underdog position is ideal. I wholeheartedly believe in the American ideal of cheering for the underdog, the pay off is huge! When everything indicates you are going to lose- not just lose but get wiped off the mat, you beat the odds.

When and if I roll that yahtzee, at that moment I have won, no matter the final score. To me the score means nothing without that Yahtzee.

All of us have heard those stories of humans beating the odds. The 90 year old Grandma lifting a car off a baby. A rock climber who gets trapped under a rock and cuts his own arm off and manages to stay alive for days until he could be rescued. The stage 4 cancer survivors.

It is about Hope. It is about our spirit and programming to survive. Maybe about a higher power. Regardless, no scientist can make that happen. No Dr. can force a patient to beat the odds, but the patient can. Not every time, and sadly not often enough. For now, we don't know what special set of situations/chemicals/emotions make these random miracles occur. When you talk to these folks about why or how they beat the odds, they don't know why they beat the odds either. What I have noticed about all of these people is that they literally drip hope from every pore in their bodies. These survivors played for the yahtzee too.

We know through Dr. Lipton that "perception" determines more then our DNA. We know through Religion that miracles happen.

Through history and experience we know you must have hope and/or faith to contribute to whatever it is that causes these against the odds scenario's.

Without Hope these notable miracles and/or statistically impossible stories of survival would not happen.

Hope and determination are required. If you give up, so will your body.

I play for the yahtzee. My overall score based on statistics sucks,but I have rolled yahtzee after yahtzee and will continue to roll for yahtzee. My life long love affair with my husband, our luck to have lived in so many cities and states, the brilliant and true friends,the constant opportunity to experience and learn new things, my double yahtzees getting Sara and Abby for daughters. Last year we rolled a triple yahtzee and Abby is doing better.

When the odds are against you,Roll for the Yahtzee!

Thursday, January 17, 2013

Introducing the Regional Coordinator for the UMDF(our region)

I had the pleasure of speaking with Cassie Franklin(UMDF) recently.

One of the things that even those that dislike my opinion(or me!) can agree on is that there is a divide in Houston for support. I think many feel very alone on this journey and often have no idea where to turn for help,resources or just support.

My impression of the UMDF and Cassie's representation of the UMDF is that they want to make sure that ALL Mito patients feel comfortable and aware that the UMDF is here to support all whether you see a Dr. in CT or WA or Fl, or if you see a Dr right here in Texas. They really do want to support us to work as a community to help everyone.

When she says to call her for anything, she really means it! It was a great conversation and I feel much more centered about what I need to work on to help support the greater Houston Mito community in 2013.

I asked Cassie if she had an introduction that I could share here. For those who have not had a chance to get to know Cassie, give her a call.

Hi, I’m Cassie Franklin, and I’m the (fairly new) Regional Coordinator for UMDF in your area. Actually, I live in the DFW metroplex; so considering that our region stretches all the way up to North Dakota, I’m pretty much your UMDF next door neighbor! My job is to help connect you with any information, support people/opportunities, awareness materials, etc that you could ever want. And, I do my best to help connect people/families/patients to others. Please feel free to contact me directly by email cassie.franklin@umdf.org or phone 979-571-2147.

I really want to hear from you, and my goal is to help volunteers in your area create experiences and opportunities that fit your needs. In fact, if you would like to be a volunteer, we are ALWAYS looking for more voices for awareness, more listeners and planners for support, more walkers for EFL, and the list goes on! We have some Muffins for Mito meetings coming up at the Woodlands Mall—I hope you can make it! There isn’t any formal program, just time and space to connect with other patients/families over muffins. If you want more info, please let me know!

If you are at all curious about who the heck I am as a person and/or how I came to the UMDF: I am in the yellow shirt on the left in the photo with my husband and my brother’s family at the Central Texas EFL. I am not a mito adult or mito mom myself, but my nieces (the three kitten-faces in the photo) have a church friend with mito. That is how I came to learn about mitochondrial disease, and I just happened to be job searching (right place, right time) when the UMDF position came open. My husband and I are both Aggies (Classes of ’02 and ’06). He works in IT, and I am a nonprofit professional—passionate about working for a great cause. I am also on Facebook if you’d like to friend me and communicate that way. I hope to hear from you and I will do whatever I can to support you and further the search for a cure.

Can You Sleep at Night?

One of the blogs I go out of my way to read daily is The Thinking Mom's Revolution.
Today they posted a bit of wisdom from Martin Luther King which I have shared above.

Their focus is Autism, but really they offer a lot more, so much more.

What they inspire in me is that there are no answers until the questions are asked. That even the answers are NOT set in stone and will likely change with each new question.

They inspire me to ask myself the questions. I "feel" that this spike in devastating childhood diseases like Mito,autism, and more are connected. That if we were NOT so scared of our government or the almighty dollar or the social stigma of our communities we might find out that we are responsible for hurting and destroying our children. How can we possibly only focus on a treatment when we don't know the cause?

How can I care for Abby knowing something I am eating, or some vaccine, or some GMO, or some chemical I spray in my house could be causing this disease in your baby? Seems so incredibly wrong, not moral to turn a blind eye- selfish. My heart is heavy each night wondering "What am I doing to contribute to this epidemic that is rapidly destroy an entire generation of children?" I don't sleep well these days even when I know Abby is feeling better because of our change in environment and food.

Admittedly, years ago I opted to be an upstream swimmer. Which means I often walk alone. It also means that I tend to piss people off. I am not a good person to invite to a support group, or fundraiser. No blind faith in anything. I question everything including myself daily.

For every fact that we have believed over the centuries it has been proved untrue by 20 more new facts. Knowing that, how can you not question? How can we accept as a community that today's treatment won't be deemed life threatening tomorrow?

Knowing that artificial sweeteners are bad for our bodies, why not acknowledge that artificial vitamins can be bad for our bodies too? Easy leap for me to question, how about you?

Knowing that as late as the 1970's they(Medical world)were still prescribing lobotomies- which a few short years later we now recognize as torture,abuse, violent and not humane- why not question blanket treatments for Mito? for Autism? New diseases and new treatments-

Why do pediatricians and Drs. push vaccines that can cause Mito, Autism and worse and insinuate that you are abusing your child by not vaccinating, yet, think that babies that are left on their backs for 24 hours a day to the point they have flat heads, displaced brains and disfigured faces isn't child abuse and continue to encourage parents to leave their babies to become disfigured? I am horrified that instead of calling CPS on these parents they prescribe PT and head shaping helmets- What is wrong with us??? I cannot for a second imagine leaving a newborn baby to cry it out let alone abandoning a child to the point that their little heads become mashed- but that is what culture is accepting today as okay- tomorrow like the rest that will change. Maybe my instincts are way off, but I think that a flat head from not being held and loved is a clear sign of abandonment and abuse.. Somehow the Drs. don't see it that way. Yet, you better get that vaccine or you are a bad parent for asking the question.. I don't get it.

The rules will change tomorrow. History has proven that again and again. Knowing that today's facts will be proven wrong tomorrow, how in the world do you not ask the questions? I am tired of losing sleep. Aren't you?

Yuca Puffs

The Yuca madness continues! Hands down we just cannot get enough of yuca. It has completely replaced the potato in our home for now.

This usually turns out "puffier" but I used leftover mashed yuca I had already added coconut yogurt to- if you want a more rounded yuca puff just mash the yuca plain. The flavor is rich, deep and really goes well with everything. We have made this with finely minced red and green pepper, peas, really anything goes! This replaces a biscuit or side dish in our house, but with the chicken added it really makes a great portable to go lunch too!

1 medium sized Yuca boiled and mashed(I added 1/4 cup coconut yogurt- if you want rounder "balls" do not add coconut yogurt to your mashed yuca)
1 finely shredded carrot
1 finely chopped boiled chicken breast
4 cloves of garlic finely minced
1/2 a yellow onion finely minced
2 eggs well beaten
1 Teaspoon of baking powder
Salt and Pepper to taste
Dash of cayenne pepper

Pre-heat the oven to 400 degrees.

Saute onion,garlic,carrot in grapeseed oil or coconut oil.

Mash the Yuca up as if you were making mashed potatoes. Then mix all of the ingredients up in the bowl together.

Drop by teaspoon on greased cookie sheet. Bake 25-30 minutes.

Wednesday, January 16, 2013

The Corn Free Journey

We have learned a ton this year. Corn is everywhere!

!) There are a number ingredients/products posted on corn free lists on various blogs. Just because they are listed doesn't make them safe. Just because something isn't on the list doesn't mean it isn't safe. Right now, the lists are guidelines at best. Ingredients in products change frequently. What was safe last month may no longer be safe this month. You must try everything for yourself. What one reacts to may be fine for you and vice versa.

2) There are plenty of products that are free of corn, if you are willing to look for them and "try" them. Many that are allergic to corn will shop at International Markets that don't cater to the Western diet(aka corn diet). Indie/Paki, Asian(Thai, Vietnamese) carry a ton of safe, corn-free products. There is risk involved, but there is risk walking into any American market as well.

3) Learn to cook. IF you cannot find anything safe to eat, you aren't trying hard enough.

4) Anyone can grow a few safe veggies. A pot on your patio, a planter on your window sill. Every major city in America has farmers markets. Mourn the loss of your junkfood and start exploring your options- you may be surprised to find that without corn you actually get the opportunity to expand your diet.

5) Proteins- this is tough. Most farms(large and small) feed their animals grain which as a rule is loaded with corn. Some folks will react to the meat. Once the animal is ready to be butchered, they rinse the cuts in a "sanitizer" that often has corn. Then the wrapping they use on the meat can be full of corn as well. You can get around this with research. There are farms moving away from feeding their animals corn. You can find a small local butcher who will work with you to butcher and package your meat safely. However, we have found meat to be very challenging but we still find enough to get by.

6)The number of Americans suffering with Corn Allergies is growing by the day. But, very few will ever develop corn allergies to the point of anaphylaxis. The MAJORITY of corn allergy sufferers are not likely to die from a minute exposure, though many will feel bad from it. Constant exposure to allergens even without life threatening episodes is very hard on the body and can lead to other health issues.

7) Allergists, Drs., rarely understand that corn is hidden in our food. They will often simply tell a patient to avoid cornstarch, popcorn and syrup- and the patients are still reacting like mad. Find a good online resource of hidden corn ingredients- things like "citric acid" are corn saturated. MSG is corn derived and many other commonly found additives to all our western foods.

8) If you are allergic to corn, odds are you will have allergies to something else as well. A few are just allergic to corn, but that is unusual. It seems most that I have talked to with a corn allergy also are allergic to other foods as well.

9) An allergy to corn can occur at any point in your life.

10)Some are more allergic to "airborne" corn.(movie theaters,Target,Mexican restaurants with corn chips)must be avoided. Some react more to "contact" corn. This group must be careful to avoid corn in soaps,lotions, cleaners. Some are most sensitive to corn in food. And for a rare few, they are equally reactive to all types of exposure.

11) Say goodbye to eating out or packaged foods. If you only eat out, or prepackaged foods- your world is going to be turned upside down. Sounds terrible, but I promise you will be much healthier for it!

12) Corn is in your medication. Over the Counter and by prescription. Find a compound pharmacy.

13)Just like the "gluten free" craze, there are folks that are going corn free to lose weight or avoid GMO and not because they have an allergy. Unfortunately there are even some anorexics and other eating disorders that have found avoiding corn can aid their disease. For those who are avoiding corn for political or healthy reasons I am glad to have them! The more consumers who demand products without corn,soy, chemicals and preservatives the easier(and cheaper)it gets to feed Abby.

14)If you have just found out you are allergic to corn- don't panic! Despite what seems like a daunting task to find safe food, it really is widely available.

15) There are benefits to going corn free. Most "junk food" has corn in it. So, when you remove corn you radically improve your diet! Yes, corn free ingredients often cost more, but you are saving money because you no longer are buying Starbucks, gas station snacks, power drinks, booze, or going out to eat- you come out ahead really! Plus you feel better which ought to save you a few trips to the Dr.

16) Everything that you used to buy on the shelf can be made at home clean and safe. If you are complaining about nothing to eat you are not trying. We have to have food to eat and if you cannot prioritize finding food you can safely eat,you have much bigger issues then your allergies. From a burger to fries it can all be done safely, easily and corn free(and minus many other allergens)at home with very little skill.

Buy a cookbook. Buy allergy self help books. Take a cooking class. Ask your parents. Watch YouTube- there are video's on everything from peeling a carrot to making quiche. Join a support group. There are TONS of resources if you are ready to eat right for your health.

In America corn is yellow gold. Our economy and fiscal success are tied to corn. Don't expect that anyone is going to campaign to remove corn from our food supply. I am okay with that- we have found plenty to eat without corn. Honestly, when we removed corn we also removed the toxins, fats, chemicals that many Drs. are blaming for the American obesity crisis.

Challenging but you can do it, and plenty of added health bonuses to going corn free. We feel better, I have lost weight, Abby has stabilized. After a year, we don't miss corn one bit.

Tuesday, January 15, 2013

Junk Food and Allergies

Hopefully soon there will be articles that are about Mito and Junk food.. :-)

The Telegraph

Junk food linked to asthma and eczema in children

Eating junk food just three times a week may lead to asthma and eczema in children, scientists have found.

Children who eat junk food are at increased risk of asthma Photo: ALAMY
By Hayley Dixon8:43AM GMT 14 Jan 201362 Comments
The high saturated fat levels in food such as burgers lower children's immune systems, it is believed.
A research project involving more than 50 countries found that teenagers who ate junk food three times a week or more were 39 per cent more likely to get severe asthma. Younger children were 27 per cent more at risk.
Both were also more prone to the eye condition rhinoconjunctivitis, according to The Sun newspaper
But just three weekly portions of fruit and vegetables could cut that risk by 14 per cent in the younger group and 11 per cent among the teens, it is believed.
Researchers from New Zealand's Auckland University looked at the diets of 181,000 youngsters aged six to seven and 319,000 aged 13-14.
Related Articles
Asthma inhalers worsen condition 08 Jan 2013
Jeremy Hunt considers new fat and sugar limits 05 Jan 2013
Why do most parents park their children in front of TVs? 02 Jan 2013
The scientists then asked if the children had allergy symptoms.
They wrote in the journal Thorax, where the study is published: "Fast food may be contributing to increasing asthma, rhinoconjunctivitis and eczema.
"Regular consumption of fruit and vegetables is likely to protect against these diseases."
In the UK alone 1.1 million children already suffer with asthma and one in five get eczema.
The team of researchers warn that their results do not prove cause and effect.

Saturday, January 12, 2013

Chia "Flour"

At this point I think many of us have heard of chia seeds. Lots of us have used ground chia seeds and mixed with water to use as an egg substitution. When I tried chia with Abby last year we suspected it was not a safe "food." and did not try again. Last month however I discovered hairy basil seeds that though a little different perform the same as chia. Abby has tried them and done fine. Which has encouraged me to find a clean safe chia to try with her again.

I was googling and found a Chia Flour- they "process" it to remove the oils and claim it can be used like any other gluten free flour in place of wheat flour.

You know I have to try it!

Thought I would share though and see if anyone else had tried it or even knew such a thing was available. Part of project elimination has been finally exploring a zillion foods we had ignored over the years in favor of easy Western processed stuff. I have been shocked and shocked again at how delicious some of these alternatives are and how when prepared in Western style dishes you would never miss the old low nutrition and chemically saturated stuff!

Nuchia Foods has a chia flour that is mixed with organic brown rice flour and one that is 100 percent chia flour(according to their website.)

I also searched Amazon and noted a few other brands selling 100 percent chia "flour."

Nuchia appeals to me because the only thing they sell is the chia flour which reduces the likelihood of cross contamination. I will have to ask about their "processing" method to see whether that is an allergen risk.

Wednesday, January 9, 2013

Pizza and Cinnasticks- Allergen Free

Gluten free, egg free, dairy free, soy free, corn free, nut free, seed free. tomato free, and cinnamon free!

Really pizza- and yes we put red sauce, and "cheese" and a couple toppings and we all agree- Amazing! Not too weird at all! :-)

Really Cinnasticks- you know, those pieces of pizza dough they butter and sugar for the kids dessert, these were better then those! A little crisp, chewy, sweet and just as bad for you! :-)

Gluten free Pizza Dough(batter style, no-knead!)

1 1/4 cup warm water
1 packet yeast
2 tablespoons sugar

2 cups gf flour blend
1 tablespoon of grapeseed oil
1 teaspoon salt.

Cold Oven

1/2 cup Red pepper sauce(italian seasoned)
onions,peppers or anything else you like on your pizza
coconut yogurt cheese(or other "cheese" that you tolerate they have nut cheese, soy cheeses and some out of rice now depending on your allergies)

Combine water,yeast and sugar allow to proof(the yeast will get foamy if it is good to use)

In a large bowl place flour and salt. Add grapeseed oil and proofed yeast mix to flour and salt in bowl. Mix well. set aside for 5 minutes to "rest'. Will be a thick batter. Spread aprox 1/2 of the batter(saving the other half for cinnasticks)in the bottom of a well greased 8-9 inch pie pan or other round cake pan.

Use some of Abby's red pepper italian sauce(previous blog entry) to top. We had sauteed onion and orange peppers on hand to sprinkle on the pizza as well. I also had a few tablespoons of coconut yogurt cheese(post is coming)that we added a few italian seasonings to and spooned across the top.

Bake at 325 for 25 minutes.


pizza dough
2 tablepoons melted coconut oil
1 Tablespoon Lyle's golden syrup
dash of salt

1/4 cup granulated sugar
dash of cloves.

In a well greased square pan(8x8) pat/spoon/spread pizza dough smoothly into greased pan. Mix salt,melted coconut oil and Lyles golden syrup together and pour over the top of the dough.

Bake at 350 for 20-25 minutes. Sprinkle sugar mix heavily and evenly across hot baked dough. Slice and serve with a small bowl of glaze.(corn-free powdered sugar with hot water). We tried drizzling some glaze on top of the sugar and it did not stick to the sugar when we cut- still tasted just fine even not pretty!

Homemade Mrs Buttersworth (corn-free) Syrup!

If you are trying or must avoid corn,chemicals, colors and other various scary things added to our food, you are going to have to throw out that pancake syrup.

Read the label on most of those pancake syrups. Most hardly have any real maple syrup! Full of corn syrup,artificial things and worse! But guilty as charged, I sure love the flavor of that junk :-)

First thing you do is find 100 percent Maple syrup(caution- some of the processing they use on the maple syrup can be corn tainted, so check out their processing practices carefully.)

After you stand in the aisle and have a heart attack over the insane price of a tiny bottle, you suck it up and bring it home.

You make pancakes. You eye that very very expensive bottle and wonder if your pancakes will be gooey enough with just a teaspoon. Nope. Real maple syrup doesn't smoother your pancakes like that chemical and corn created sweet stuff. So you have to add more. Suddenly you realize based on the price pancakes are going to be a 1 time a year affair- who can afford it more often?

IF you also are allergic to seeds,nuts, dairy,soy you have NO butter or margarine that is safe to eat. I can testify to the fact that despite the cost of that 100 percent maple syrup you are going to need to use a lot more then you thought to get gluten free, egg free pancakes anywhere moist enough to choke down.

Then finally, you taste it. Your child tastes it. Guess what? Doesn't taste ANYTHING like the beloved cheap pancake syrup you love..

We love pancakes,french toast really anything that gets to swim in pancake syrup, but after going to clean we avoid it. We just were too disappointed with the cost,flavor and lack of gooey sweetness that clean and safe 100 percent maple syrup offered us.

That is until recently. We love Lyle's golden cane syrup. Honestly, you could just use that buttery sweetness on your pancakes and it would taste more "normal" then then the clean 100 maple syrup.

We now mix 50 percent real maple syrup with 50 percent lyle's golden syrup.

It tastes like that beloved, cheap Mrs. Buttersworth- we can soak our pancakes and feel like we never gave up that bad goodness! The buttery undertones of the Lyles makes up for no butter(mostly). The cane syrup "cuts" that often overpowering maple flavor. The cane syrup behaves more like cheap pancake syrup and allows your plate to swim in moist, sweet and sticky goodness. Lyle's isn't cheap, but it is WAY Way cheaper then clean, safe 100 percent maple syrup.

Our purpose with Abby was remove chemicals, allergens and add nutrition where we could- we have no interest in adjusting to saying goodbye completely to all our old favorites, we just want clean versions.

So give it a try. A much cleaner option. Tastes sooooo good and cheaper too!

1 cup Lyle's golden syrup
1 Cup 100 real Maple syrup.

Mix and keep in the fridge. Heat up to serve with breakfast.

Feel free to reduce or increase the Lyle's.

Tuesday, January 8, 2013

Abby's Tamarind Rice

Spicy,sour, sweet and rich- great nutrition and now one of our new favorites. This is terrific served with grilled or blacked chicken breast and a nice yogurt sauce. Or just by itself. I did do a lot of "changes" to the more traditional version. We used chickpea's instead of ground nuts. Many recipes called for sesame oil, so we skipped that altogether. Also red pepper ketchup instead of tomato paste(called for in some recipes), I had no fenugreek or curry leaves.. but in "spirit" we created a dish we really are happy with and will either stand alone or go nicely with meat.

1 diced onion
2 teaspoons tamarind fruit puree or paste
1/2 red chili flakes
1/2 teaspoon cumin
2 teaspoons sugar(not just because we love sugar, it really provides a balance)
1 cup water
1 teaspoon coconut oil
2 Tablespoons red pepper ketchup(or tomato sauce or paste if you tolerate)
1 can chickpea's
3 poblano chili's or hatch chili's(I had 3 hatch chilies I had dehydrated that I threw in, any mild green chili,canned,fresh or dehydrated will work)My hatch chili's had quite the kick and next time we may reduce some of the heat, too spicy is tough on Abby, though Derek and Sara love it.


Rice- whatever is safe. I needed to clean out leftover partial bags so used jasmine,wild red, basmati rice..

In saucepan saute onions in coconut oil till tender. Add everything else but the rice!

Allow to simmer until peppers are tender and flavors well blended.(aprox 1 hr on low heat.)salt to taste. I found that it took a bit more salt then I thought it would to bring the right balance of flavors together.

Combine cooked rice with tamarind mix- serve and enjoy!

With the chickpea's it really is a meal on it's own. We really liked grilled chicken and coconut yogurt sauce with ours. Especially the yogurt sauce, a favorite all around here.

Monday, January 7, 2013

The Peer Pressure to Give.

It is that time of year again. The Walks for Mito and a zillion other diseases fundraisers will gear up to begin again.

A great way to make money for various organizations, but the marketing,peer pressure can get overwhelming and unnecessary.

From the moment I open the first email or snail mail reminding me it is time to give or convince others to give I begin to cringe.

My first fundraising experiences were selling girl scout cookies- and after my one and only attempt I quickly realized I am not cut out for it. The shame I felt when I only managed to sell a few boxes. The shame and guilt and failure I felt when the Scout Leaders handed out prizes and applause for those girls who recruited their families to help them sell. To this day if I see some shy tortured little one standing out trying to hide behind a table or a parent trying to sel those(very unhealthy on all levels) cookies I HAVE to buy from them- see Peer Pressure at work, all these years and that fundraiser guilt is still taking money from my wallet.

Then the school fundraisers- just as bad. Worse for my girls. They would actually have the representatives for the fundraising companies that the PTO's and PTA's would contract with come to the school and waste academic time on assemblies convincing the kids that the coolest kids sell the most. Pressuring the kids with cool toys and pizza parties to go hit up their neighbors and family for cash. I remember the girls coming home and with woeful eyes begging me to help them sell more then anyone else so they would not feel like failures. Not okay with us. It was a hard lesson for my girls. That it is okay not to be good at something. I taught them that being good students, and respectful and working harder then the other children was gift enough the years they attended public school and home. I explained "taxes" to the girls, it still sucked for them to go to school with no overpriced wrapping paper or cookies sold, but they learned.

I cringe when I hear "fundraiser". A lot of peer pressure, competition, and often social climbing built into the activity.

Before you get all upset, I am thrilled for those who love that stuff- who have the energy to get the donations, the energy to walk, the energy to organize and the personalities. Having the personality to be a salesperson is a positive. We need all types in this world.

We don't participate. No energy and no personality for selling. But, if you are like me there are still plenty of ways to give and avoid all of that high energy activity. No guilt from me or mine anymore, we have worked through that at this point in our lives and recognize not all of us are cut out for that type of social event.

You can simply donate money. Yep, that easy- skip the middle man activity altogether,avoid the crowds,the germs, the time,the energy,the costs of entertaining all of the contributors- your money will go further without all those extra costs attached. It takes money for organizers to set up neat tents,flyers,food,drinks, entertainment.

You can keep a blog. You can teach a friend about Mito. You can read research and share what you learn with other Mito families. Write to your representatives, Senators about how Mito families often have to travel for medical care, or the lack of awareness for funding..etc

You don't have to give money in order to support any organization, and you don't have to convince others. Just surviving and learning to live beyond your disease is a huge gift to all of us.

So to all you black sheep like me out there, no need to hide while the merry fundraising occurs, just give in a different way. Maybe a low energy way, maybe cash, maybe quietly or privately. It is okay! I promise! Some of us just don't enjoy it or have the energy, or aptitude to sell it.

There are plenty of folks out there who enjoy those spotlight moments, who appreciate the social agenda and get together or just those fierce competitors-

We gladly step away from it all and let them enjoy their moment! :-)

JackFruit Coffee Cake

After walking past the cans of jackfruit a zillion times at the Asian markets, I finally gave in and threw it in the cart. I thought I had grabbed jackfruit in brine(for savory cooking, "meaty" texture and is often added to vegan dishes)but I had grabbed the jackfruit in syrup. This is not a fruit Abby has tried so was a little nervous.

The flavor is good and different. pineapple, apricot, blueberry a lot familiar flavors mixed into one fruit.

If you are like most of America you haven't tried this fruit yet, you really ought to get a can, it is just that good. Abby is picky and she said this was immediately a flavor she loves.

A little info on the Jackfruit-via Fruits Info site.


Jackfruits are rich in dietary fiber, which makes it a good bulk laxative. It aids the bowel movement and prevents constipation.


Vitamin A helps in maintaining a healthy eye and good vision. Vitamin A in Jackfruit helps in your dose of requirement needed for your eyes. Jackfruit has anti-aging properties, which makes the skin appear young by slowing down the cells degeneration.


The high iron content in this exotic fruit helps to prevent anemia and helps in proper blood circulation in your body.


Jackfruits are also rich in phytonutrients like lignans, isoflavones and saponins which have anti-cancer and anti-aging properties. These phytonutrients can help eliminate cancer-causing free radicals from the body and slow down the degeneration of cells that leads to degenerative diseases thus providing you protection against cancer.


The Jack fruit contains Vitamin A, a powerful antioxidant which is beneficial for vision. The vitamin is also known for maintaining the health of the skin and the mucous membranes and for boost up the function of the immune system.


Copper plays an important role in thyroid metabolism especially in hormone production and absorption and jackfruit has essential micromineral.


Avoid in individuals with a known allergy or hypersensitivity to jackfruit (Artocarpus heterophyllus). In some patients, jackfruit is a Bet v 1 (birch pollen allergen)-related food allergy.

JackFruit CoffeeCake


For the Batter
2 large eggs
1/2 cup coconut milk
1/4 cup melted coconut oil
1 teaspoon vanilla
1-1/2 cups gluten free flour
1 teaspoon baking powder
1/2 teaspoon baking soda
1/3 cup sugar

1 can jackfruit in syrup(save the syrup for a smoothie! YUM!)
1/4 cup coconut yogurt(greek style)

For the Glaze
1/4 cup powdered sugar
1/2 teaspoon vanilla extract
enough coconut milk to make thick glaze.


Heat oven to 350°F. Oil a 7, 8 or 9-inch round cake or pie pan.

In the large bowl of your mixer, mix together eggs and sugar on medium-low, or whisk by hand.
Add melted coconut oil in a little bit at a time, add vanilla and milk; mix again on medium-low.
Add flour,baking powder, and soda and beat until smooth.
Reserve about 2/3 cup of batter. Spread just enough batter/dough to cover the bottom of the prepared pan.

Drain jackfruit. Place jackfruit in food processor(I used my ninja)a process till chunky. Mix in 1/4 cup coconut yogurt.

Drop 1/2 tablespoons of jackfruit mix over batter and spread as much as possible.
Drop the remaining batter by heaping tablespoonfuls onto the top of the filling and spread a bit for some of the spoonfuls to meet, leaving a bit of jackfruit mix showing.
Bake 25-30 minutes or until toothpick clean in the center. Cover with foil if it becomes too brown.

Glaze- while coffee cake is baking mix powder sugar, vanilla extract and a bit of coconut milk to make glaze, top coffee cake with glaze when done baking and still warm. Top with toasted coconut if wanted.

Serve warm. Store leftovers covered. Refrigerate if not using right away within a couple of days.

NOTE: This coffee cake recipe is great with any filling. We have filled with prepared pear or peach filling. Any jam etc. But, I really hope you try the JackFruit- it is AMAZING!!!

Microwave Tapioca Pudding(egg free!)

Dairy free- egg free and easy!

1 cup prepared tapioca small pearls

1 can coconut milk
1/3 cup Lyles Golden syrup
1 tablespoon potato starch
1/4 cup water.

1 dash salt
1/2 teaspoon vanilla extract(we use homemade)

Prepare tapioca pearls according to package.( 10 cups water to 1 cup tapioca pearls. I boiled and stirred mine till they started floating and turning translucent, reduced heat to low and covered for about 5-7 minutes until they became completely translucent. I strained and rinsed with cold water to stop the cooking and set aside.)

In microwave safe bowl(I used a 4 cup pyrex measure)combine coconut milk and Lyles golden syrup. Then heat to just shy of the boiling mark- aprox 3 minutes.

Stir in salt and vanilla.

In separate small bowl whisk potato starch with hot water. When smooth pour into hot coconut milk and lyles mix. Mix well with whisk. Potato starch works fine to thicken as long as the milk mixture is still very hot. You don't need to cook it. If you do not notice your pudding thickening, microwave for 30 seconds at a time until it thickens. When smooth and thickened add prepared tapioca pearls and chill.

That easy. No eggs.

OPTION 2: 1 cup plain or vanilla greek style coconut yogurt, 1/3 cup Lyles golden(honey agave or maple), dash of salt, vanilla extract and stir in cold tapioca pearls. No cooking!

Sunday, January 6, 2013


4 roasted red peppers( I roasted and peel the skin, removed the seeds and chopped)
1/4 fresh onion(diced)
1/4-1/2 peach diced and rehydrated if you used dehydrated(dehydrated,fresh, or fresh frozen)-Pear would sub fine.
1/3 cup braggs apple cider vinegar
1/4(or less) cup sweet potato(next time I will skip this, I don't think it did anything to help the ketchup besides bulk)
1/2 cup cane syrup or granulated sugar(Domino's)
1/2 garlic powder
salt(used pink himalayan, and be prepared it takes lots of salt)
1-2 teaspoons of black strap molasses(MUST be blackstrap)

In sauce pan combine the roasted red peppers,onion, peach(or pear), sweet potato, garlic powder and about half the sugar, half the Braggs and about 1/2 teaspoon salt. Cover and allow to simmer low and slow until everything is tender.

Once cooled puree in blender. Now start tasting. I needed a lot more vinegar and salt to balance mine out. I added a bit more cane syrup at one point, it came down to tasting and tasting and adding until I thought we were close. It was still missing something so we added about 1 teaspoon of blackstrap(1/2 teaspoon at a time-powerful flavor)and that made it perfect! So guilty of not measuring in my haste to conquer tomato free ketchup for Abby.

The peach/onion buried a lot of the red pepper flavor but the red pepper is still strong. I wish she could have white vinegar- the Braggs was a bit shy on "tang" but, overall we were very pleased. As long as you like roasted red peppers this is going to be a tasty alternative to tomato based ketchup.

NOTE: The fries in the pic are a mixture of yuca and potato fries. I made the yuca exactly as I do potato in the oven. They are a bit starchy and the ones that baked in more of the oil on the cookie sheet turned out more tender. So yuca fries may be better fried then baked. Still, tasty for us though!

Saturday, January 5, 2013

Ginger Yuca Drops- egg free, gluten free, soy free, corn free and dairy free.

Yuca is easy to digest. Ginger aids in digestion. Made sense to me to combine these two super foods for a soft cookie that Abby could not resist even on a bad GI day. Also, I am finding yuca a good egg replacement and with Abby getting more and more iffy with eggs I am trying to scramble to create some yummy options without eggs. I opted to use coconut yogurt because I wanted to use up my last batch that turned out a little thin for our tastes, and if you tolerate cultures they can aid in the digestion process as well too.

So really an ideal Digestive Biscuit for Abby.

The texture is somewhere between a pumpkin cookie and a very tender scone.

These hold together very well. The texture is more along the line of a scone because of not using egg or as much fat I expect. But, exactly what works well to soak up gastric juices causing stomach upset. I opted to glaze this batch and it worked well. Of course I think these would be amazing with some fresh cooked and spiced pears, or apples with a bit of coconut whip cream too! I bow to the Yuca! :-)

2 of these and a cup of tea- perfect.

1 cup mashed/pureed cooked yuca
1/2 cup coconut oil(TT or Spectrum or Nutiva)

2-3 Tablespoons finely minced candied ginger
3/4 cup thin coconut yogurt(or full fat coconut milk for those who cannot have cultures or ferments)
2 cups gf all purpose flour blend
3/4 cup fine grated coconut flakes(we used Nutiva)
3/4 cup sugar(Domino's)
1 teaspoon ground ginger
1 teaspoon baking powder(Hain's)
1/2 teaspoon baking soda
1/2 teaspoon salt.
1 teaspoon vanilla extract(homemade)

Preheat oven to 375

Ungreased cookie sheets.

I suggest using soft coconut oil, though not liquid. I mixed the yuca, coconut oil, and sugar together first.

Then I added everything else.

If your dough is too soft(won't hold itself when you drop a spoonful, increase the fine coconut flakes by 1/4 cup)

If your dough is too thick(more like bread dough then thick cookie batter, increase coconut yogurt/or coconut milk by 1/4 cup)

These needed between 10-12 minutes depending on size.

Glaze: Corn free Powder Sugar and ginger syrup.

Placebo- What if they say it is Mito, and it isn't?

What if you are told your child has Mito- and 5 years later- you find out they don't?

When Abby at 18 months was diagnosed with IFSH - our world stopped. Despite being young, I understood that IFSH was terminal. That like Leigh's or many other progressive diseases it would have destroyed her.

I got to admit, we spoiled her rotten. Already I am a parent that believes all children cry for a reason and need massive attention(some folks call this spoiled)- so thinking she was dying, well talk about a heavy dose of naughty! ..

Derek said "She doesn't have it, she will be fine.". That is it, no talking about it, no questions.. he flat out knew she did not have it. I remember my "gut" agreed with him absolutely and completely. Our well meaning PT's and Drs. kept telling me that "gut" was simply denial and everyone feels that way.. Both Derek and I could see certain changes in Abby that seemed "good" to us, so we pushed forward believing they were wrong- What if we both accepted she was going to die so young? Would I have thrown in the towel and given up on PT,OT, Sp. Would I have stopped finding new Drs. to look at her and "make sure" that is what she had? Would I have stopped reading journals, websites etc to find what was "really wrong with Abby?
Is it possible if I had seen her as a baby that was dying instead of getting better, would it have changed the outcome?

Who do you believe? Yourself and husband and your instincts or these super educated medical personnel..

By the time Abby was age 4 I knew Derek was right- and that was when I started to trust my "gut", that sometimes modern medicine gets ahead of it's self.

This is why having an ABSOLUTE gene and/or second(third or fourth...) opinion is so important.

Even with the same mutation the prognosis can be very different. Even with Leigh's there are huge variables between patients..

Abby is a "fader" with her issues.. no drama and no runs to the ER- Never acute. Some patients are all acute- but live fairly normally with school, social etc but spend a few acute flares a year in the Hospital..

After all the changes in Abby's diagnose's, I guess I am a bit skeptical about prognosis etc since nothing sticks to Abby.

My Grandmother lived to 86(somewhere in there, she never was honest about her age). She had 98 degree scoliosis. She had cancer a number of times, she had heart issues, She actually had spinal bifida that was closed but still was repaired(HUGE deal back then.) She also had to have what they thought were parts of a twin removed from a large swelling on her neck- and a huge list of other health issues yet, she lived. From family stories, she was always the weakling.. the sick one. We actually have a lot of slow to walk, slow to talk, uncoordinated people that live to ripe old ages. We also have a lot that die very young from the common "heart disease" "cancer.".

We love that commercial for the Cancer Centers.. The patient with Pancreas cancer said the specialist told her he did not find an expiration date anywhere on her body.

So maybe I have a different take on all of this, but one thing I am absolutely confident about is that with Mito there are no absolutes. Things can be fine and go sour, or things can be awful and get much better.

We got Abby's nDNA back, as predicted nothing in particular popped up. Since only 20 percent of Mitochondrial depletions have a known mutation we were not terribly surprised. Frankly, I was relieved. It means we are taking the right journey, that we should keep looking. It might mean I am right, the depletion is secondary, now to find the primary.

That first scare when Abby was a baby was a powerful lesson. The placebo effect is real. Our realities can be changed and sometimes by simply how we see our reality.

Friday, January 4, 2013

Yuca Rolls(egg free,dairy free, gluten free,soy free,nut free)

Leftover mashed yuca. When you are cooking yuca one of the key differences between it and potato is yuca is more glutenous. It "stretches" is almost gluey. Also, with Abby having more difficulty with eggs I have read that often folks can replace the egg with a tapioca and water mix. After looking at alot of yuca/cassava dessert recipes you can tell it is specifically a glutenous starch much like glutenous rice. Made sense to see what would happen without egg.

So easy to make is part of the appeal. Moist and tender almost too moist. Thinking next time I may reduce the amount of yuca I use. Or maybe not. :-) Another great part of this recipe besides no eggs is no guar gum ! And they did not need it.

I have one more cup of the mashed yuca in the fridge. I might try this one again to get a more "tradition" crumb- but the girls said they enjoyed the extra tenderness and are betting these will reheat beautifully tomorrow. Fast,easy, tender and low allergen- that cannot be beat.


2 cups mashed yuca(boiled peeled yuca with coconut yogurt)
1 cup teff flour
1/3 cup grapeseed oil
2 packets yeast
1 teaspoon salt
1/2 cup sugar
1/2 cup warm coconut milk

Proof yeast in 1/2 cup coconut milk and 1/2 cup sugar.

Mix everything else in bowl. Once yeast is foamy, add the the yeast mixture to the rest in bowl. Mix well.

Fill muffin tin's about 3/4 full. Place in warm spot to rise for 30-60 minutes- bake at 375 for 20-25 minutes.

Thursday, January 3, 2013

Flourless Carrot Cake(gf,cf,df,sf,nf,)

It is better then good- you will not miss the flour at ALL! Sweet, tender, spicy and moist- I suspect this will be a new favorite around here.

The key to this cake is Yuca.

Also known as:Cassava (Manihot esculenta), also called yuca, mogo, manioc, mandioca, and kamoteng kahoy.

A woody, starchy tuber. Less flavor then a potato a little sweeter. I was sold on using it more frequently when I read about it's anti inflammatory properties- a very good thing for Abby!

From Nutrition with Sonia-

Yuca (Cassava) Root is better than Potato
Posted in Food as Medicine, Fruits & Vegetables
I do know a lot of people who really enjoy this vegetable. It is a good source of B3 (helps to lower cholesterol), plus iron and calcium. Yuca is a root vegetable with a rough hard thick brown covering, a little like bark. The inside is hard, white and dense, it’s quite heavy. Similar to the potato in that it must be cooked before you eat it. It is quite a lot starchier than the potato and a tad sweeter.
This is not to be confused with the yucca plant – yuccas are widely grown as ornamental plantsin gardens or indoor house plants in cooler climates. Some will bear edible parts – like fruits, seeds, flowers, or stems, but not the edible roots we are talking about here. The yucca plant has long blade like leaves growing from a central point from the ground, similar in configuration as the aloe Vera plant (but with softer leaves). The yucca plant is like a small tree, with three medium oval shape blades on each small stem.
The yuca root contains high levels of a phyto-compound, called saponins which acts as a natural steroid. When the compound is extracted from the yuca it makes a perfect natural soap or shampoo.
How do these compounds affect our health when we consume them? These saponins are similar to steroids. They help to reduce inflammation of the joints particularly and in the body in general. Yuca is often included in formulas for inflammatory conditions like arthritic and rheumatoid conditions. It has been reported that yuca has the ability to break up mineral and inorganic deposits. What does this mean? It helps to break down or prevent the built up of calcification of kidney stones, gall bladder stones or calcification of joints. And due to its anti-inflammatory properties it can also help conditions like an inflamed prostate. However, no one plant should be seen as the be all and end all – it should be consumed along with a whole host of other plants.
Yuca has a positive effect on encouraging the action of the ‘good guys’ the friendly intestinal bacteria, which in turn aids the proper digestion of food and prevents the ‘bad guys’ from flourishing. In research it has been shown that the high content of saponins in this plant when ingested stay in the intestines and act on the intestinal flora helping to regulate the balance, stimulating the friendly normal flora and inhibiting others.
In the US much research is being carried out on the use of saponins from the yuca on its use in sewage treatment plants to breakdown organic wastes faster, also on farm and factory waste. This is due to saponins positive effect on the good bacteria speeding up the process naturally.
When we eat foods (beans and lentils) or herbs (alfalfa, fenugreek, garlic or tribulus) that are high in saponins they stimulate better absorption of vitamins and minerals and decrease the amount of toxins we absorb. This helps to put less of a strain on our already over worked detoxification organs. So with more nutrients absorbed, an increased action of anti-inflammation, improved immune system, better functioning organs – conditions like arthritis and other degenerative diseases improve. The saponins provide a more alkaline environment (most people’s systems are too acidic these days) aiding the digestive tract improving digestion, reducing incomplete digestion and decomposition in the colon which causes unpleasant smelling gases.
The common potato has the opposite effect to yuca, the potato is part of the Solanaceae family, and contains plant compounds that encourages pain and inflammation, another main member of this infamous family is the tomato! Many people have found their aches and pains have improved by eliminating tomatoes, along with eating healthier. The other attribute yuca has, is its rich source of absorb-able manganese, this helps in the process of repairing joints. Researchers have looked closely at this plants action and its affect on joints and cartilage, the amazing steroid like saponins strengthen the bowel flora of the intestines, breaking down organic body wastes like uric acid (which causes pain) and cleansing mineral deposits that might exist in the joints.
Native Americans used the soapy leaves from yuca for numerous conditions. Poultices or baths were used for skin sores and other diseases as well as for sprains. Certainly used in all sorts of inflammatory conditions.

I cut off the ends and peeled the the thick peel off.(The skin is often too thick for my peeler so I peel with a knife.)

Then I grate. I usually avoid the center of the root- it can be hard depending on how mature the yuca is, and though I have cooked with these a bit, I am still learning.

Flourless Carrot Cake


1/2 cup chopped black mission figs(our favorite.)
1/3 cup homemade vanilla extract(not as strong as vanilla extract and the vodka is a nice touch!)
1/2 pound (I grated roughly 1 1/2 cups loosely)peeled manioc root (with woody center removed)
2 cups fine grated coconut(I used the Nutiva macaroon fine grated)
1/2 cup grated carrot
1/3 cup sugar
1/4 cup brown sugar
1 teaspoon allspice
1/2 teaspoon nutmeg
1/2 teaspoon mace
1/4 teaspoon cloves
1 teaspoon ginger(you may want to cut this in half, we like it strong)
2 eggs
1/4 cup coconut milk
1/3 cup grapeseed oil
1 teaspoon baking powder
1/2 teaspoon salt


Soak the figs in the vanilla potato vodka (overnight if possible you could use rum and raisins instead if you tolerate).

Preheat the oven to 325 degrees.

Grease a 9 inch round cake pan, or 9 inch square brownie pan, and line bottom of pan with parchment.(I did not add greased parchment and wish I had)

Finely grate the manioc root (easily done in a food processor). Stir the coconut,grated carrot and grated manioc root together with the spices,salt,baking powder and sugars in a large bowl.

In a small bowl, whisk together the eggs, coconut milk.

Stir the liquid ingredients into the coconut mixture. Stir in the grapeseed oil. Stir in the figs and vodka(or raisins and rum).

Pour the batter into the prepared pan.

Bake for 1 hour, until golden brown on top.

Run a knife around the edge of the pan while the cake is still warm, then let cool in the pan.

Cut into small squares or slices and serve. This cake is delicious warm or cold, with a dollop of coconut whipped cream or mix some coconut yogurt with lemon and powdered sugar- great topping! Or just a spoonful of pear sauce? Honestly, just a plain piece makes a delicious snack cake. I had some coconut sour cream(recipe on my blog)that I mixed with some powdered sugar- that easy.

NOTE: For all you cane sugar free folks, I am guessing Honey, agave,coconut sugar or maple syrup would work fine with this recipe. :-) You could also add chopped nuts, pineapple bits, really anything you want. We just created it for Abby's particular set of allergies and food intolerances. As always, use ingredients that are safe for you.

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