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, April 29, 2013

Corn Allergy -Double check the Ingredients on my Blog and All blogs-ANYTHING can be corny!

There are HUGE variables in Corn Allergies.

Corn-Lite- These folks avoid obvious corn. Like corn syrup, corn meal, corn starch and some also avoid commonly corny things like citric acid, waxes and vitamins.

Corn-Tween-(in between lite and extreme)- These folks are like Abby. Most need to avoid not only corn-lite but also more of the hidden corn and cross contaminated hidden corn. Things like water(yep corny!), packaging, airborne, skin products, need to use a compound pharmacy for all medications. Almost no vitamins are safe. Some react to even what meat is rinsed with after butchering. Some seem to react more to airborne or soaps or food but don't always react as strongly to all. Often this group have "building" reactions where they can handle a trip to the grocery store if they can come home and be absolutely clean, but if they go to the grocery and drink unfiltered water and then brush their teeth with a corny toothpaste they will react. Abby does better with eggs and chicken that has not been fed corn. Some in this category can eat chicken or their eggs when they have been fed corn.

Corn-severe- Extremely sensitive to ALL corn no matter how minute. Stores,homes, foods, airborne- all very dangerous-this population MUST practice extreme caution, even to what fertilizer is used in growing veggies and fruit. Manufactured products that are produced on the same lines or even same plant are dangerous.

The products I use are always at least corn-lite, and more and more Abby is more in-between so we have been more careful. Often many of the things I make would NOT be safe for the most Allergic population and even half of the in-between population- USER BEWARE!

As awareness to corn-allergies is growing I have noticed a huge increase in blogging about living cornfree.

Unfortunately, due to the overall lack of awareness that almost everything is corny at some level I have found bloggers are not making it clear that often they are only corn-lite at best. Not their fault since Drs. aren't teaching this either. Also our American population in general are realizing finally how dangerous GMO foods are and doing what they can to avoid GMO products in their diet. Avoiding GMO is very different then being allergic. Like the Celiac population the corn allergy sufferers are struggling to define the difference between intolerances,allergy, sensitivity, and those who avoid because they believe corn is evil(it is!)

Products like Bob's, Enjoy Life, Namaste many in the middle group like Abby often react to, even some corn-lite react. I don't know of 1 person in the severe corn allergy group that can eat any of it or many in the middle group like Abby. These are great products don't get me wrong and if you are just corn-lite you may tolerate them fine. If we were just Gluten-free my pantry would be packed full of Bob's- they have never said or marketed their products as corn free and if you write them they are very knowledgeable about their products. Some where along the line someone said Enjoy Life was safe for the corn allergy sufferers. If you read the ingredients it is pretty obvious that it is high risk for hidden corn. I know Abby is not alone in reacting very badly to their products. Namaste has been safe for some in the corn-lite crowd, but the in-between folks like Abby have reacted to a few of their products- Abby is not alone in reporting reactions. Does it mean that Namaste is bad? No. They follow the laws to the T. But does it mean it is safe for Abby- No.

Products like Hains baking powder,and Domino's sugars are deemed safe "usually" for many of the in-between crowd like Abby. Seem to be very well tolerated by the corn-lite. However, there is an exception to every rule. Some product that even 80 percent of the in-between crowd tolerates might not be tolerated by you. It is an insane allergy. What I am trying to say, is that are few to no absolutes with this allergy.

Please, as you start your corn free journey, make sure that you don't just take another corn allergic blogger's word that a product is clean enough for you. Unfortunately, there are very few things that are safe for all 3 groups. Double and triple check.

I have started buying many products at the Asian Market- I cannot stress enough that this is a high risk group of products. When we started eliminating corny foods and products last year I would have NEVER tried these.

Now that Abby is clean enough, she can try a new product and tell me quickly whether it is worth trying again or if she noted a reaction right away. Children cannot always tell until it is too late, full avoidance is the safest method and recommended method when it comes to food allergies. When we first started this corn-free journey Abby wasn't able to tell what was corn contaminated as she was so reactive and so sick she could not tell the difference.

I cannot recommend enough, that as you find blogs like mine, or other well meaning bloggers that you MUST double check that the products being used are safe for your allergies-

There are a number of terrific product lists available through various corn-allergy groups on facebook. Delphi has a corn allergy group that is the authority on being corn free. There are two great corn free groups on facebook where the members are from all different levels of reactions and they have a tremendous amount of information to share. Hands down, others with a corn allergy have been far more helpful to Abby then any Allergist or other Dr over the years.

Many manufacturers do not understand how citric acid, or glucose or stevia or medications or any other number of items can be made corn contaminated through the production process- so I do recommend double checking with the corn allergy population. There are now thousands suffering from corn-allergies from newborns to Seniors. It is frightening the rate that even folks who have never had an allergy before are now suddenly developing allergies to corn.

What I make for Abby is safe for Abby, and maybe for you, but don't take my word for it! I have noticed a few blogs now claiming corn-free that I would never try the ingredients they recommend, please proceed with great caution as you search for products that are safe for you and your variables with allergies. Food Allergies can kill-

Sunday, April 28, 2013

Cookie crumbs are better then the Cookie,

(gluten free, soy free, dairy free, and "corn-lite" I question the safety of the freeze dried peaches and the sticks for those with extreme corn allergies.)

When you use them to make Peaches and Cream Ice Cream Bars

Abby and I were talking about ice cream bars and how nice it would be if she could have them.

Ice cream sandwich would be the easiest option and I am sure she would appreciate them, but we were after something a little more interesting.

I started to wonder if I could make a "Good Humor Style" ice cream bar. You know the ones where they are strawberry on the inside and vanilla around the strawberry and then coated in crispy cookie crumbs and bits of freeze dried stawberry?

We had homemade gf allergy free graham crackers and we have recently found a freeze dried peach that is only freeze dried peach and she tolerates them well.(corn-lite safe for sure).

I had a tub of vanilla ice cream that I had used a lot of rice milk to make which turned too hard to enjoy like the softer and higher fat coconut milk ice cream..

So just had to come up with a peach filling.

Again I am so grateful for the Ninja. I first made a batch of full fat vanilla coconut ice cream mix. I then "powdered" the freeze dried peaches in the single serve Ninja. I mixed that powder into the vanilla base. The next morning I went to make it and was a bit worried as the freeze dried peach powder had made it a bit thick- but worked fine in the ice cream maker.

The big question once I had everything I needed was how to put these together?

I lined an 8x8 pan with saran wrap. I slightly softened enough of the rice milk vanilla ice cream to spread about 1-2 inches on the bottom. This I placed back in the freezer till it had firmed back up. then I spread the peach coconut milk ice cream, and again placed back in the freezer till it was firm. Then topped it with one more layer of the rice milk ice cream. Placed the whole thing in the freezer overnight to make sure it was frozen solid.

In the morning I made a batch of simple syrup- I figured I needed something to make the outside of the ice cream sticky to get the crumbs to adhere.

I crumbed some of the graham crackers to fine crumb in the ninja single serve and did the same to some more of the freeze dried peaches and combined in a shallow dish.

Then I pulled the ice cream out of the freezer. I pull it by the saran onto the cutting board. The saran wrap peeled off surprisingly easy. Using a warm knife I cut the block of ice cream into 8 sections. I gently pressed a popsicle stick into the bottom center of each ice cream section. Then I dipped each section quickly into the still warm but not hot simple syrup and then dipped the sticky ice cream into the bowl with the combined cookie crumb and freeze dried peach powder. I placed them on a cookie sheet lined with saran wrap and placed them all back in the freezer for 1 one hour. I opted to wrap each one in a piece of saran wrap for ease for Abby to grab one when she was in the mood.

These turned out gobs better then I could have ever dreamed and Abby gave them a double thumbs up.

Rice milk vanilla Ice cream(I used homemade rice milk based for the outside layers because it gets harder and I thought it would would hold better)
Peach fullfat coconut milk ice cream(used a fullfat coconut milk homemade vanilla that I simply added powdered freeze dried peaches to)
homemade graham cracker crumbs(gluten free, corn-free, soy free, dairy free etc)
freeze dried peaches.
Simple syrup,warm not hot to dip the ice cream in to get the crumbs to stick(you could use honey and water or maple syrup and water and warm it a bit)

This definitely is not a quick thing to make lots of steps, but well worth it.

Saturday, April 27, 2013

Yes to May

Thankfully, Spring is nearing an end in Houston.

The tree pollen seems to get her the worst and whichever tree's were flaring her last month appear to be settling down finally.

We also figured out why(or at least part of the reason) she was reacting to the compound meds- Birch.

The compound pharmacy uses a cellulose from birch. We were starting to wonder if Abby actually could be allergic to everything!

The nephrologist Abby saw was brainstorming with us and mentioned that the vast majority of diuretics are sulfa based. She pointed out that most with sulfa allergies tolerate them fine, but some don't. Even more interesting some who are fine with sulfa react to it in diuretics.

She gave us a name of one of the few that are sulfa free and we were ready to go head to the compound pharmacy and give it a try.

That is until she reacted to the new toothpaste I bought her. Toothpaste is full of all sorts of allergens including plenty of corn. One brand called squigle is corn free so bought a tube for her to try. She reacted badly to it, I was shocked since so many with corn allergies use this brand safely. When it comes to reactions I always blame corn first then dairy then soy..

With the help of some of the Mom's on the corn allergy group we figured out that the cellulose they use in the toothpaste is from BIRCH!!!

Over the various allergy testing repeated over the years,she always has reacted to tree's. Cedar being the most significant, somewhere in the back of my mind I knew she had mild reactions to birch, but I just always associated birch allergies with airborne, not food.

Either her allergy to birch has become more significant since many products that are corn-free tend to use birch based substitutes or it has always been more of an issue then I had realized.

On a positive, I know to avoid birch based products when finding food and soaps for Abby, on a negative now another ingredient we have to eliminate.

I am kind of hoping that with Abby these strong reactions to the birch is due to "full bucket". Abby can often tolerate small, minute amounts of exposure if her overall exposure to her main allergens near to none. With Spring time and her crazy tree allergies in full flare her bucket is just too full and she is reacting to everything.

Now to see if her compound pharmacy can make yet one more substitution!

We are still seeing fairly constant improvements. Our definition of improvement includes not just gaining ground toward more activity, but better nutrition, better sleep, ease of bouncing back to baseline.

I am far from a patient person and this process is about patience. A lot of hurry up and wait going on around here.

When I think back to what we went through with her when she was a baby/toddler from her worst to the getting better point it took years.. the older you get the longer it takes to recover so I remind myself to hang in there, we are making progress.

Funny how now and then I catch a glimpse of her from the corner of my eye and whatever way she is sitting or standing takes me back to the very same postures during her improvements as a toddler.. it is almost like deja vu... In that way I can see a clear pattern and in her favor for sure.

She is moving around more. Her voice is stronger. Her nutrition scores are fab. Digestion is better then it has been in a couple years. Her hair is growing back in at a decent rate. More often then not good color and a sparkle in her eye vs that drawn fatigued and pained face. Any of the POTS issues we control well by the right temperature, the right amount of energy use, the right amount of fluids...blood sugars are steady.. etc.. we have a couple funky little new things brewing but figuring they are caused by the improvements vs getting worse.

After a car ride a couple weeks ago we realized she still has such a long road ahead. Just sitting in a different position then what she is used to at home she used a bunch of different muscles and it exhausted her.. on the other hand despite the exhaustion she is ready to go again.

It has been delightful to see her participating around the house more regularly. Now and then she can fold some laundry, or she does the dishes or other little chores she truly delights in being able to do again when she feels good. She was so miserable before and bed was where we found her more often then not, now she is in the thick of it around here and becoming an active manager.

Frail but getting stronger.

I have had a few days where I sure wished we had taken a different route. I wish we had trusted various Drs.- because when she is having a bad couple of days, boy do I suffer serious self doubt that we made the right choice. If we were doing what the Drs. recommend and she was getting sick- I would not carry the full burden of our choices. Abby remarkably doesn't have these doubts- she said she has absolute faith our choices have been the right ones. She said if she was faced with it all over again she would do the same. It makes it gobs easier that Abby is an active participant in her health.

So as May approaches we have another allergen to avoid, but by finding it we just eliminated another hurdle to getting her feeling herself again.

I know these allergies are insane with her, and I know without a doubt they are connected to her depletion and myopathy- just not how exactly. Over the last few months I have run into a few more families who have been shocked by their mito children's allergies- some have no family history and most report their specialist don't feel there is a connection. Yet, remove the allergens and it often was key in the stabilizing. So, for a sub population allergens are clearly part of the Mito picture..

Project elimination was the best medicine to date. We are hopeful,grateful and certainly understand Abby's body better and thus are learning quickly what works and what doesn't. April did not work! :-) Now with the airborne tree allergies settling we are back on track.

Fingers crossed May is as terrific as I think it will be!

Thursday, April 25, 2013

Sweet Potato Pie Bars

One of our tricks for getting through a bout of constipation is a combo of figs and sweet potatoes. We try to add blackstrap molasses one way or another (sauces,breads etc) throughout the week and that is usually enough plus molasses has terrific nutrition. This week we needed to pull out the big guns. We use sweet potato(fresh peeled and boiled)instead of pumpkin as Abby just doesn't tolerate pumpkin. She also doesn't tolerate raisins or prunes or dates- so figs. We also use dried longans in place of raisins at times, but they don't seem to impact digestion in the way that figs do. Abby also avoids cinnamon. We have found that allspice with a bit of ground cloves takes the place of cinnamon really well. When she does eat a food this aggressive on her digestion we always try to load it up with ginger, ginger tends to settle any stomach upset or cramping.

I gravitate toward root veggies that have not been scrubbed squeaky clean, not always but often enough a dirty tuber is a hint that they were not washed with potential allergens to make them more stable or prettier for consumers. Sweet potato's that don't bother Abby seem easier to find then Idaho potatoes. We do always scrub, and peel for Abby though.

Cookie/crust Layer:
1 1/2 cup gf flour(There are few brands of various flours that are considered safest in the corn allergy community. We have been buying the various flours at the asian markets and Indie/Paki stores- though rarely gluten free certified so a risk for celiacs and always a risk of getting corned)
1 tsp. baking powder
1/2 tsp. salt
3/4 cups brown sugar
1/2 cup coconut oil(melted)
2 eggs

Fig layer:
1 1/2 cup stewed figs(dried figs heated in water to a boil and soaked aprox 30 minutes till soft,drain. We look for dried figs that have no chemicals or preservatives-they sun dry very well and don't need the preservatives I have bought from both Amazon and Vitacost and been happy with no reactions)
1/4 cup fresh lemon juice
1/3 cup sugar(or less, we like this quite tart between the two sweet layers)
1 or 2 Tablespoons of Martinelli's apple juice as needed(if the figs after pureeing are too thick to spread add a bit of the apple juice and puree again.)

Sweet Potato Layer:
1/2 cup sugar
1/4 cup coconut oil
1/2 cup gf flour
1/2 tsp. baking powder
1/2 tsp. salt
1 tsp. allspice
1 tsp. ground ginger
1/4 teaspoon ground cloves
1/4 teaspoon ground mace
1 egg
3/4 cup sweet potato puree

2 Tbsp. sugar
1 tsp. allspice
1/2 teaspoon ground cloves

Heat oven to 350


Stir together gf flour, baking powder, and salt.
Stir together brown sugar, coconut oil, eggs

Mix dry ingredients into wet and then pour into greased 8x8-inch pan. smooth/ or press smooth.

For Pumpkin Layer:
Cream together sugar and coconut oil.

Add the rest of the ingredients and pour over cookie layer and smooth out evenly.

For Topping:
Combine sugar and allspice. Sprinkle on top of pumpkin layer.

Bake at 350* for 35 to 40 minutes. Cool completely.

Wednesday, April 24, 2013

Lemon/Poppyseed Scones(gf,df,cf,sf)

I remember eating scones in Victoria, Canada on summer trips. I really don't remember being impressed enough to remember the taste and texture. The whole idea of having "tea" were more memorable to a little girl.

That being said, I have no idea whether these are as scone like or not as far as texture goes, we just know they were very tasty! :-)

2 1/2 cup gf all purpose flour blend.
1/2 cup granulated sugar
3 tsp baking powder
1 tablespoon ground chia seed( Or exchange 1 1/2 teaspoon of guar gum and remove the chia and gelatin)
1 tsp unflavored gelatin
1/4 tsp salt
zest of one lemon
1/4 cup poppy seeds.
5 Tbl coconut oil, chilled and cubed
1.5 c coconut milk cream(if needed, warm it a bit to make sure it is liquid enough to easily blend)
1 1/2 tablespoons lemon infused grapeseed oil

Preheat oven to 400 degrees.

In a large bowl combine dry ingredients,(including poppyseeds and zest) and combine thoroughly.

Cut in coconut oil with a pastry cutter, fork,until it resembles gravel.

Add coconut milk cream and lemon infused grapeseed oil and mix till combined and holding together.

Shape into rough round ball and press flat, about 3-4 inches thick.

Slice into six (6) wedges. You could cut like biscuits as well

Bake for 20-25 minutes or until lightly browned.

NOTE: These are like a combination of a biscuit and shortbread. Without guar gum they are more crumbly then usual, but for once we felt like the gluten free crumble was a positive. The second day when we sampled these reminded us more of shortbread. We think these would make a terrific strawberry shortcake, in our case Abby isn't eating strawberries but some sort of fruit or berry shortcake. You could glaze these with a quick lemon glaze, but we did not feel they needed it.

Tuesday, April 23, 2013

Samoa like cookies- gf,df,ef,cf,etc.

These honestly were just as delicious without the chocolate as they were with, believe me, I made sure to taste test both! Abby thankfully doesn't mind the rest of us indulging in a touch of chocolate though she cannot. I had to add a swirl of chocolate,considering I was trying to mimic a samoa cookie. The cookie I thought at first wasn't going to work, it is a little different then what I "thought" shortbread should be, but it ended up holding fine as long as you bake it all the way and allow to cool before trying to move it. Keeping the dough cold until it goes into the oven is ESSENTIAL to prevent spreading.

1 cup gf flour blend
1/3 cup sugar(domino's)
1/2 teaspoon guar gum(soy lite)
1/4 teaspoon baking powder
couple dashes of salt
1/4 cup coconut oil(spectrum or TT)
1/4 cup palm shortening(spectrum)
1/2 teaspoon vanilla extract if you can(we skipped since Abby is reacting)

Preheat oven to 300.

In bowl, mix flour,sugar, guar gum, baking powder,salt. Cut palm and coconut oil into dry ingredients. Add vanilla. I used my hand and brought it together into a ball. Place in fridge till chilled.

Between two sheets of parchment paper roll cold dough to about 1/2 inch. Use biscuit cutter or other round cutter and cut cookies. Transfer cookies to parchment lined cookie sheet. For best results, place prepared cut cookies on the cookie sheet in the fridge for at least 15 minutes- these tend to "spread" when baking. It is essential to have a preheated oven and cold dough.

Bake for 20-23 minutes.

Allow to cool. Prepare caramel/coconut filling.

Caramel/Coconut layer:

1 1/2 -2 cups lightly toasted unsweetened coconut fine shreds

1/4 Cup palm shortening(you can use coconut oil,but with caramel we have had more consistent results with palm)
1/2 Cup Sugar
1/2 Cup Brown Sugar
1/2 Cup cream from the top of a can of cold coconut Milk
1/2 Cup Lyle's Golden Cane Syrup
coarsely ground Salt(about 1/2 teaspoon we use pink himalayan)

In large microwave safe bowl combine; palm shortening,granulated sugar, brown sugar(light or dark),coconut milk cream, Lyle's. Combine a bit and microwave for 2 minutes. Stir well. Microwave for 2 more minutes. Stir well. Microwave for 2 minutes more(I did 2 minutes and 20 seconds, my microwave is older). Stir. Mix in coconut flakes and salt. Allow to sit on counter for about 10-15 minutes to thicken- if it is too runny it will ooze off the shortbread cookie, too cold and it won't spread.

Top the cookie with your caramel/coconut filling. Allow to cool(hot sugar is bad bad bad in your mouth!!)

IF you have safe corn-free,soy-free,dairy-free, gluten free chocolate you can make a chocolate glaze/icing to pipe on the cookies. Abby eats them without the chocolate.

Monday, April 22, 2013

Could you eat on 4 dollars a Day?

Now try to imagine feeding a family of four on 4 dollars a day. Not possible right? What if you had allergies or gastroparesis or other digestive issues? Impossible.

Yet, thousands of families in America wake up each day even with food stamps and have to figure out how to feed all 4 in their family on 4 dollars a day.

There was a time when our family had to work very hard to make sure the food made it paycheck to paycheck. When I made a whole chicken last 3 days worth of meals, when brand names only happened if they were cheaper then the store brand.. how soon we forget that daily struggle when food is fresh and accessible. Honestly, these thoughts would have never made it to my blog if I had not stopped by the Gluten Free Dr's blog and read her most recent post- she has some great thoughts on how to make a difference.

I could feed us something on 4 dollars a day but we would be lacking nutritionally, we would likely be hungry and we would be sick from the chemicals(msg and more make us all ill), I don't think Abby would be as healthy as she is, in fact odds are she would be better on the supplemental formula's(free for those who get medicaid,which many disabled children's family benefit from in Texas since it doesn't matter how much the parents make for an income) full of corn and chemicals she was so allergic to that accelerated the progression of her disease then on what I could feed her with 4 dollars a day.

Today, I took a close look at my fridge. I had all sorts of bits and pieces I would likely throw out at the end of the week. Some homemade kraut that was fine but aging, a fourth of a jar of blueberry sauce, some chickpea nofu... I plan on cooking them this week and eating them- even if I "want" something else.

It is probably time to do a pantry clean out. That food will go to friends or food pantries- NOT the trash.

Add insult to injury, American's do NOT know how to cook. Or grow their own food. Or their own eggs any longer. My friends really think I am nuts for making chickpea nofu,our own kraut,our own yogurt. I do it because if Abby wants to eat and get better, I MUST,to do any less would be neglectful. I would be clueless on how to do it if I had grown up in a Western style household or community. I count my blessings I grew up around hippies, old fashioned Seniors, and a budget driven frugal and health focused Mother. I grew up eating veggies from the garden, mushrooms from the woods, clams I dug myself at age 7.. getting full on an endless supply of wild blackberries, huckleberries, thimbleberries- I learned to fish while I learned to read. My neighbors had pigs,chickens, cows.. My neighborhood was more Senior citizens then young folks- they never bought caramel popcorn balls or divinity or fudge- they made it. That was my world, and as a teen- I hated it! I wanted a family who ate twinkies, who gave me change for the junkfood machine, I wanted McDonald's twice a week or a coke after school. Eating "homemade" was soooo not cool.

Today, as I water the parsley,rosemary, tomatoes,peppers,figs,lemon,orange trees in the yard- I am so grateful.

Imagine never learning how to make a loaf of bread, or how to cook fresh cabbage, or what to do with a bag of dried beans and being given 4 dollars a day to eat. Heartbreaking. Dried beans, cabbage and clearance foods are the only foods I can fathom even stocking up on if I was only given 4 dollars a day.

Our government needs to stop the corruption in our medical,social services and make sure that the families that are literally going hungry are taught and cared for first. I am pretty certain it is universal to want to feed our children the best. Why else would things like pedisure and fortified bread have ever become popular? Because we wanted not just healthier food, but faster food. Unfortunately, neither healthy or affordable are fast- even today with all our modern packaged foods.

Is it any wonder that children in families dependent on government healthcare and foodstamps are more likely to suffer from chronic health issues? Asthma,behavioral issues,diabetes, obesity.

And our government says that cheap food in a box is safe- it isn't. Fresh is best. Sadly out of reach and after a generation of dependency on boxed and packaged foods, American's don't grow their own fresh foods or even how to cook it.

Some may say we don't have time- but like exercise(so many make time for the gym or exercise)we must make time for food, real food.

Instead of TV after dinner, put a planter on the patio, you can grow parsley, basil, rosemary. Have a flower bed? Plant a tomato or radishes or anything really- veggies and herbs are easier to grow to then flowers. Have a yard? Plant a plum tree, or peach or fig, or loquat- depending on where you live there is usually a fruit tree or berry that once established needs little to no care.

Have an orange tree that you aren't able to eat all the oranges? don't leave them on the tree to rot- take a box to your neighbors, to work.

We really need to reassess what we consider food, and the value we attribute to it.

I might try feeding Derek,Sara and I on 4 dollars a day, just to truly understand what much of America is facing today. I won't risk Abby's health for this particular experiment. I am horrified that as I sit and type this there is a Mom somewhere likely close by trying to figure out how to feed her children tonight. Even worse, there is probably another family with a child with allergies or diet restrictions having to feed their children on 4 dollars a day- and we wonder why the rate of chronic health issues is going through the roof.

New Mito Blog, Not new to Mito

I admit, my blog list I follow is growing and growing. From food to medicine to gardening to Mito and other illnesses, I follow some terrific folks who are sharing their worlds.

There is a new blog- Nick's Crusade.

Nick isn't new to the Mito Journey though. He was one of the first couple dozen identified. He is like many, and they have yet to identify exactly which type of Mito/MD that he has- he is unique and he has lived the Mito journey, but "his" Mito journey. We are all learning, no two Mito journeys are a like.

Nick isn't new to writing or advocating, but his blog is up and I am hooked! He has an easy way of saying what needs saying. His perspective is of special value to me since like Abby he has dealt with this disease since infancy, yet here he is an adult.

There is the childhood journey that so many of us parents are sharing. Then the teen years either those who have made it to the teen years or the disease onset during the teen years. Or there is the adult onset journey- not a whole lot of adult patients(I think Nick is the only one I have read!) out there sharing a life long journey. It has been amazing to hear his voice.

I suggest you stop by and read his blog- he has had quite a journey, yet he lives freely and fully despite the ravages to his body- he is the ultimate example of living well despite your disease.

As a Mom, when I read what Nick shares, he empowers me to keep fighting. More then that though, he reassures me that life is not about what your body can or cannot do, it is all about who you chose to be.

Thank you Nick for being there. 18 years under her belt and after reading your blog, it is clear there is no reason for her body to define her. Adulthood is the next step in her journey, and you helped her and I look forward to this leg of her journey!

Click to read Nick's Story

Sunday, April 21, 2013

Chicken Pupusa- corn-free, gluten-free, dairy-free, soy-free

This was inspired by a FoodNetwork program we were all watching the other night. Abby decided I could convert it, she was right. Traditionally the dough is corn,oil and water. Clearly that would not work! I remembered though the gluten free bun dough I used for Abby's sweet red bean buns. The dough worked well steamed or baked so took a guess it would work just as well fried, and it did! Really not a pupusa but in our world it is now!

Anything fried is a rare thing in our house. First, my Mom just never fried, I honestly never knew you could cook a hamburger in a frying pan until my stepmom moved in- I had only had hamburgers off a grill or a broiler up until then. Secondly, Abby just doesn't tolerate fats well. She was able to eat more of the filling then the bread, but enjoyed what she could eat and would like us to make these again.

Traditionally the fillings seem to be mostly pork, something we cannot use. So chicken it was! We opted to use a spicy, mexican kind of flavor, but you could make these more asian, or greek or even as a sweet dessert with the right fillings.

Chicken Filling:
1 boiled, shredded chicken breast(or two if you would like more filling)
1 diced sauteed onion
1 diced and sauteed jalapeno
1 diced and sauteed red pepper(feel free to add tomato,but since Abby cannot have tomato we opted for diced red pepper)
1/2 cup coconut sour cream or coconut yogurt
1 teaspoon red pepper
1 teaspoon cumin
salt to taste
pepper to taste
(cilantro is terrific, but Abby and Sara are allergic so we used it for a garnish for those that could eat it.)

Boil and shred your chicken. In a bowl add sauteed vegetables and spices. Mix in coconut sour cream. Split in half. Reserve half for topping the pupusa when serving. The other half of the chicken filling you place in food processor or blender and pulse- a chunky paste. (you don't have to puree the filling, but if you don't the chunks tend to rip the dough when you are shaping it.)

Navy Bean filling:

1 cup well cooked and drained navy beans
3 cloves roasted garlic
salt and pepper.

I place all in a bowl and use a fork to puree it roughly.

Gluten-Free dough:

(works well for red bean buns too!)

This gluten-free dough works for steaming,baking and frying.

1 1/2 cup gluten free all purpose flour blend
1/2 cup chickpea flour or millet flour
1 teaspoons baking powder
1/2 teaspoon salt
package active rise yeast
1 cup unsweetened rice milk(homemade, or milk of your choice)
1/4 cup grapeseed oil
2-3 tablespoons sugar

1)Add the gf flour,chickpea or millet flour, baking powder, salt, to bowl and Whisk to combine.

2. In a small saucepan over medium heat(or microwave), warm the milk, oil, and sugar, stirring until melted and warm, about 1 minute. Add yeast to proof.

3. Make a well in the middle of the flour mixture, pour in the warm liquid yeast mixture, then stir to combine well. The dough will be soft and sticky more thick batter then dough.

Cover tightly and set aside for 10 minutes, till it firms up slightly. The dough is now ready to shape your buns.(if too sticky to form into ball and flatten add a bit more flour, if too dry and it cracks too much a bit of warm water)

Make sure you have the filling of your choice ready before shaping dough. Separate dough into aproximately 8-9 balls. Flatten ball into a pretty flat disk, put a spoonful of pureed chicken and veggie filling and a spoonful of bean filling in the center. Work and mould the dough to close over filling and seal by molding and working it gently(keep round shape) flatten as far as you can without the filling spilling out.

In a medium heat skillet fry in grapeseed or coconut oil for aprox 3 minutes on each side. Drain on towels. Serve with salsa,chili sauces, coconut sour cream,fresh cilantro, or fresh green onion. I used a hatch green chili sauce(abby cannot have because it was not homemade), some of the filling I reserved, and coconut sour cream. Abby said it was great with just the filling and coconut sour cream.

Friday, April 19, 2013

Sorghum Puffs- Flourless. Dairy- free, corn-free, soy-free, gluten-free.

Last year Abby reacted badly to some sorghum flour we tried. We "think" that the flour was corn contaminated. So, last month I decided before we ruled out sorghum(she does super well with blackstrap molasses so..) I would try it again. We bought sweet white sorghum grain. I figured if I ground it myself we would reduce the likelihood of corn contamination. I ground it into flour in the ninja single serve and sifted it to remove anything coarse. Thankfully(after that much work)she tolerated it well. We have tried it a couple more times and so far all has gone well, that is except my enthusiasm for grinding it! Yesterday was pantry clean out day and I found a small partial bag of the sorghum grain. Rather then toss it(too lazy to combine with the new bag)I decided to boil it just to see what the whole grain(minus the hull, white sorghum simply has the hull removed) sorghum would taste like. It reminded us a lot of a super mild barley. Which would be great for a soup down the road, but I had a pot of cooked sorghum and no plans on how to use it. I decided to see how well it would puree in the Ninja. I have successfully used pureed rice for making a few different things so figured worth a try. It pureed very smooth which was a bonus. So now I had a bowl of pureed sorghum, and still had no idea what to do with it. Finally, this morning I remembered that Japanese Milk bread uses basically a flour/water thick rue to make a softer bread. Then I realized I had just made bread so seemed silly to make another loaf(gf bread is always best fresh). Not sure what inspired it but decided it reminded me of cream puff batter before you add eggs. Why not? I just added some oil(instead of butter) and cooked it together till it had evaporated some and was sticky dough like I remembered. I was a little shocked when they turned out great- but now I know, I don't need flour to make cream puffs. I have a bag of teff grains and millet, and next time I cook the grains for a side dish I will be putting some of those aside to puree for cream puffs too.

(Picture of the pureed sorghum grains)

1 cup pureed cooked sweet white sorghum grain

2 Tablespoons grapeseed oil

2 eggs

1 teaspoon baking powder

2 dash's of salt.

Preheat oven to 425

In saucepan combine grapeseed oil and sorghum puree. Heat on medium high heat and whisk the whole time. Once it gets to where it is bubbling somewhat keep cooking till it starts to hold it's own shape- it will get stiff and more elastic. (aprox 4-5 minutes). Remove from heat. While whisking vigorously add one egg at a time. Once both eggs are incorporated whisk in baking powder and salt. Should be thick enough to pretty much hold it's own shape when spooned.

On parchment lined baking sheet, spoon sorghum dough by the spoonful at least 2 inches apart.

Bake for 20 minutes. Turn off oven and leave puffs in oven till the oven is cool. This helps them dry out a bit further.

Fill with whatever you like. We have been on an egg salad kick, so today we threw in egg salad. When you cut them open, if there is any soft wet doughy stuff just scrap it out, this will help your puffs stay crisp longer.

A Life at Home

Just 100 years ago, we all spent a great deal of time at home.

Before the industrial era humans were homebodies. We spent a lot more time with our parents. Children often went to work with their parents(which was often based at the home). School was at home. Eating was at home. For many, Church on Sunday was the only day they might leave their home for weeks on end. We raised much of our food at home. We gave birth at home. Our children grew up and lived at home(or built a house close by)Being home was the standard for 100's of years. The traveler, the wanderer, the gypsy was seen with some suspicious if they could not find happiness within the confines of the their home and family.

We are at home. Admittedly, we have always been home more then many of our suburban counterparts. I grew up rurally and was raised to be comfortable at home much of my time- most in our community spent more time at home or close to home in general. Going out to eat happened a couple times a year, not daily. We went to school but until high school we did not have much as far as after school activities. We did Soccer practice or games, or baseball games on Saturday. An evening on a weekday for practice or boy scouts was not a common occurrence. Unheard of for children under the age of 7-8 for sure. We came home from school had a snack,did our homework and if we had daylight(rain or shine)we played. After dinner we helped with dishes,chores and spent our time with family. We went to bed freshly bathed no later then 8pm. Abby has always been limited on energy. Even at her best attending school was as much as she could do and needed to be home after a day to nap,eat and rest. Play dates were only for the weekend when she could recharge.

Today, starting at dawn the "normal" for many Americans is to get up,get dressed and leave the home. Off to daycare or school, off to grab McDonalds or starbucks, both parents to work, kids at school or daycare then school,the gym, lunches,ladies clubs,Mom clubs,charity clubs and activities, then after school daycare or lessons, running out to eat and finally making it home by 7pm and usually a much later bedtime then 8pm, is considered very NORMAL. Middle class families often pay for workers to care for their homes, to do their lawns,dry cleaning,housekeeping, home repairs even raise their children for them. I remember very well what type of work a broken septic tank had in store. Today we hire someone specially trained, certified. After all time is money right?

If we could transport someone in a time machine(so I have an active imagination-)to 2013 from 1913 how weird our society would seem to them!

I know there have been times Abby has wished more then anything to have the energy to even shower herself when she is sick. I am certain she has longed to participate outside of the house more, even a quick shop now and then that didn't half kill her, but she is pretty content overall. We have an incredibly rich life at home. I often thank our lucky stars for the internet and cable.

Over the past 40 years especially, we have pushed for acceptance of various populations. From those who lead alternative lifestyles to those with disabilities. We have made huge strides to provide equal rights to various populations that were once shunned.

The Hermit however has been deemed crazy - why is that? Though the definition of hermit has changed,(maybe today 1 that stays home 5 days a week to be with their family and 100 years ago 1 who stayed home for months at a time and avoided their family) the prejudice has stuck.

Odds are your local hermit probably has a very good reason to be at home. I am betting many that we assume are "hermits" probably have health issues that prevent them from getting out more.

A lot of us have found great joy in our lifestyle- to our surprise and yours. Despite the reasons that have kept us home bound we are an optimistic group who enjoy making lemonade out of lemons. To our joy, the internet has finally allowed us all to network- we get the best of everything as hermits. We get the contact without the energy. Our lives are very good.

I bow to those that go-go from dawn till dusk! How you do it is beyond me... Honestly, I feel just a little guilty of my comfortable, indulgent lifestyle. Even if Abby suddenly got better tomorrow I would be loath to rejoin the masses in route to the daycare,coffee,gym, school,shopping,lunch,clubs,lessons,classes,work, and all the other activities that keep us from our homes 6 days a week these days.

But, I don't judge you for being on the go, we would like to think you don't judge the hermit either.

With your I-phone via blue tooth while waiting in the dry cleaning drive thru, or starbucks drive thru, or pharmacy drive thru- call a hermit- every family has at least one. Odds are they are home chatting with their online friends, or gardening or reading. Though they may not lead your busy lifestyle because their health prevents it,they enjoy hearing about it.

Hermit doesn't mean crazy. Living a "hermit" lifestyle isn't bad, just different.

Thursday, April 18, 2013

Japanese Cheesecake: No Dairy, No Corn, No Soy and Gluten Free .

I have been drooling over pictures of Japanese cheesecake since I started on Pinterest last year.

We have made a Chickpea Nofu based cheesecake and we have made Angel food cake- Japanese cheesecake is the child of both.

Honestly, I think this probably turned out closer to original simply because it takes far less cream cheese.

1/3 cup Chickpea Tofu(soy if you can but unless soy is not GMO and is fermented the values are much poorer then once thought you could use cream cheese if you have one that is safe for your allergies)
1/4 cup coconut sour cream or coconut yogurt(if you can have dairy or almond you could use either of those yogurts in the "greek" variety I make both homemade recipes on this blog)
3 egg yolks
1/4 cup fresh lemon juice(careful, many lemon's are coated in wax or sprayed with citric acid(sprayers)they can and often contain corn)
1/2 cup white sugar(domino's)
3 egg whites
1/3 teaspoon cream of tartar
3 tablespoons all-purpose gf flour
2 tablespoons potato starch( guessing tapioca or arrowroot would work well here too.)
1/2 teaspoon salt.

Preheat oven to 325

You will need a 6 inch springform pan(or double the recipe for a standard size)that is greased and lined with parchment and the parchment greased..

In bowl mix salt,gf flour and potato starch, set aside.

In Ninja(or blender)mix chickpea tofu,coconut sour cream, egg yolks,and lemon juice-pulse till well blended.

Pour chickpea mixture into the bowl of dry ingredients, with whip mix well.

In another large bowl place egg whites(room temperature). Using a hand mixer(I have a high powered one that makes quick work of whites)mix until foamy. Once foamy(just takes a couple seconds)add in sugar and cream of tartar. Now whip till soft peak stage.

Gently fold egg white mixture into chickpea batter. Gently pour into greased and parchment lined springform pan. Place springform pan in a slightly larger baking vessel(my 6 inch sits nice in a regular pie pan)and fill about halfway with water.

Carefully (not to spill water or batter)place in oven and bake for 60 minutes(1 hour 15 minutes for standard or double my recipe)- (till brown and not jiggly).

We prefer to allow this to cool in the open oven(keep dogs and children away from hot ovens!)once it sets for about 15 minutes I set it on the counter and allow to cool to room temperature. Chill for at least 4 hours but best overnight. Serve with fruit or berries of your choice.

NOTE: This stuff freezes terrific! Cut into slices and wrap each piece individually for a treat when in a hurry.

Socca(with Toasted Chickpea Flour and Lemon infused Grapeseed Oil)

Hands down one of our favorite side dishes. We opt to make this thicker like a "cake" vs a flatbread. We simply use a smaller pan and increase cooking time by about 4-5 minutes. We love using flavor infused grapeseed oil to add one more layer of great taste. I used lemon flavored grapeseed oil to brighten the heavier flavor of onion, rosemary and chickpea- perfect.

Gluten-free,egg-free, soy-free,dairy-free, corn-free.


1 cup toasted chickpea flour(toasting it reduces that "beany" flavor that some of us aren't as fond of-simply pour chickpea flour into thick bottom skillet and cook on medium heat and keep it moving till lightly toasted)
1 teaspoon salt(we prefer pink himalayan)
1 teaspoon fresh ground black pepper
4 tablespoons lemon or rosemary infused grapeseed oil (see below)
1 large onion, either diced or sliced and sauteed
1 tablespoon fresh rosemary leaves, chopped(I use scissors,if you nip it small it helps release that great flavor. you can use dried rosemary, just make sure you add it to the batter before you let it sit for an hour to soften the rosemary)


Heat oven to 450 degrees.(about 20 minutes before you are ready to bake it, a hot oven is best)

Add toasted chickpea flour (besan) into blender; salt and pepper; 1 cup lukewarm, filtered water, and 2 tablespoons lemon infused grapeseed oil-blend well on high(smooth no lumps)

Cover, and let sit for at least 1 hour at room temperature or as long as 12 hours. Batter should be about the consistency of heavy cream.

Stir sauteed onion and rosemary(if you like a strong rosemary flavor,add the rosemary with the flour when you blend and the flavor will be intense) into batter.

Put a 10/12 inch pan in oven. Allow to get hot! (for thinner and chewier socca,use 14 inch pan we like ours more thick and cake like so we use a 10 inch pyrex pie pan- use what ya got is our theory!)

Pour 2 tablespoons of grapeseed oil(infused with lemon or plain) into hot pan, and swirl oil to cover pan evenly. Pour in batter, and bake 15 to 18 minutes, or until socca is firm and edges brown.

Set socca a few inches away from broiler for a few minutes, just long enough to brown it here and there(if you want,I skip this usually). Cut it into wedges, and serve hot.

NOTE: I find that the toasted chickpea flour tends to need to be sifted. You can sift the chickpea flour and whisk in the water to smooth it, but I am lazy and prefer to throw it in the ninja blender and skip the sifting part.

Feel free to add any herbs you prefer. I have added greek seasoning and topped with feta and olives and fresh basil for the hubby- which is delicious- rosemary and onion is a popular choice and I have also seen many plain versions of the Socca with no rosemary or any seasoning beyond salt and pepper.

Lemon Infused or Rosemary Infused Grapeseed Oil-

(picture of the lemon oil after 24 hours in fridge, has a nice lemon color from the peel)
In saucepan heat 1 cup grapeseed oil. Add the peel(avoid any of the white part it gets bitter)and simmer for 15-20 minutes. Remove from heat cover and allow to come to room temperature. I place oil with lemon rinds in glass jar and keep in the fridge, shaking every now and then. You can use this immediately, but I find the flavor intensifies after 12-48 hours. Discard after 2 weeks. For the rosemary(or any other herb) cut 1-2 tablespoons of fresh herb into oil and follow same process as above.(remove lemon peel or rosemary before using)

Wednesday, April 17, 2013

Honeycomb Toffee (sea foam, sponge)gluten-free, corn-free, soy-free , dairy free, and egg free.

There are a lot of different recipes that make this candy- if you google "Sea foam candy" or "sponge candy" or "honeycomb toffee" the hits are endless. Unfortunately many call for CORN SYRUP! YUCK! The versions from the UK often call for Lyles which inspired me to make this.. my first batch wasn't nearly as good- a little too chewy. This batch the center part melts away in your mouth while the top and bottom provide some sweet chewiness. Abby isn't sure it works for her since her jaw often dislocates chewing much easier to chew foods. She said the center part though was perfect if your jaw either dislocates, TMJ or maybe just bad teeth! :-) Some of the recipes called for less or more you will have to see what works for you. I saw a few that called for honey or molasses which might work well for those avoiding cane sugar.

1 cup granulated sugar(I use domino's)
3/4 cup dark Brown Sugar(lightly packed)(I use domino's)(you could easily use light brown sugar)
1/2 cup Lyle's Golden Cane syrup
1/4 cup water
1 Tablespoon baking soda.

Line a 9x9 baking pan with parchment(foil works,but tends to stick here and there I tried both and the parchment is the better option) make sure it goes up the sides as well, then lightly grease(I used grape seed but any your oil/fat of choice would work) and set aside.

In a LARGE (when you add the baking soda later on it will triple in size fast!) heavy bottomed pot, cook the sugar, Lyle's syrup and water on medium flame till the sugar dissolves and the mixture comes to a boil. (stir continuously)

Insert a thermometer, reduce heat to Medium-Low or just barely above low depending on how thick your pot base is(low and slow, it will burn on a higher heat) and continue cooking, without stirring now, until it reaches 300 degrees(watch it close,seems like it takes forever to hit 250 but jumps fast to 300) Again watch it close and do not be tempted to up the heat- cause it can and will scorch...this part of the process takes at least 10 minutes but closer to 15..

Once the syrup reaches 300 degrees, remove quickly from heat, and add your baking soda (be ready with wooden spoon to super fast stir and pour into prepared pan- the faster you do it the better the results)

The mixture will foam in a blink of an eye so stir it only briefly (5 seconds - to distribute the soda as thoroughly as possible don't sweat if it isn't perfect) and pour into the prepared baking pan.

Let it sit for couple hours to allow it continue to puff and harden. Mine puffed to alarming heights but settled a bit and stayed in the pan.

After it has cooled, you can break it into chunks. I have seen it dipped in Chocolate but that is not something Abby can eat, but on it's own a very fun treat!

Toast your Chickpea Flour (Crackers, gf,cf,df,ef,sf)

We do love using chickpea flour,but we have to be strategic as it often has a very strong "beany" flavor. Whatever you do, don't taste raw dough made with besan flour, it really tastes gross! It will cook and mellow considerably but some of the beany flavor often lingers.

Since nutritionally chickpea flour is a high protein source and great fiber I am constantly trying to figure out ways to work it into our food and reduce rice, potato and other starches.

Again and again I have seen Indian recipes suggest "toasting" the flour. I kept ignoring because "I assumed" the toasting wasn't necessary.

It isn't necessary as far as texture goes, but boy does it sure make that chickpea flour taste far less beany! Well worth the extra step.

1 cup besan flour(or if you pan is big enough 2 cups at time)

heavy bottomed pan.

On medium heat in dry pan toast the flour until the color browns 1 or 2 shades equally. I stir frequently. Do not burn! Burnt chickpea flour won't do you any favors as far as flavor goes!

I toast usually twice as much as I need and put the unused portion in a "ziplock" brand bag(ziplock so far seems to be the safest for those with corn allergies).

Below are two pic's - first one is the raw not toasted chickpea flour and the second is the toasted.

Chickpea Crackers-(as always, please make sure to check your ingredients and confirm they are safe for your allergies. We all have various levels of tolerances- corn is often hidden so always double check, even ingredients you have safely used- they often change the ingredients and unless you look or react you won't know )

1/2 cup all purpose gf flour
1/2 cup chickpea(toasted) flour
1/2 tsp salt
1 1/2 tsp baking powder
1/3 cup warm water
1/4 cup coconut oil(solid)
paprika(aprox 1 teaspoon)
turmeric(aprox 1 teaspoon)
garlic powder( 1/2 teaspoon)
(herbs of your choice really. We like the turmeric and paprika in equal amounts to make the crackers look like cheese its. )

1. Preheat oven to 400 F . You will need parchment paper and cookie sheets.

2. In a large bowl, combine flour, chickpea flour, baking powder, turmeric,paprika,garlic powder and salt...you can also add any additional add-ins you prefer...

3. Cut in coconut oil(like you would making a pie crust,you could use 1/4 cup grapeseed oil instead and simply mix in) after the oil is cut in add water and mix till combined. I use my hand to bring it together.

4. Roll out the dough into large square as thin about 1/4 inch or so( they will puff up a bit more in the oven) . I roll mine out between two sheets of parchment paper. I carefully pull off the top layer of parchment.

5. Cut rolled out dough into small squares. Place the crackers with bottom parchment right on the baking sheet. Pierce all over with fork. . Sprinkle with a few dashes of salt.

6. Bake until crackers are dry and golden, 15-18 minutes. You may need to pull out some of the crackers that brown a bit earlier...so that they don't burn.... you can pop the rest back in to continue baking if needed. these should pop apart at the cut lines, but if they need to be recut do it while they are still warm. Cool

NOTES: Too much coconut oil and these are crisp and crumbly. Grapeseed oil or palm shortening makes a "harder and more sturdy cracker". We like the coconut oil but find less is more. Between the coconut oil and the chickpea flour these can be delicate. I find using a bit less coconut oil and a bit more water makes them a nice crisp that won't fall apart. Some variables I am sure depending on what you are using for your all purpose gf flour.

Half of these I made with red pepper and rosemary(excellent!) the other half with the garlic,turmeric and paprika.

Tuesday, April 16, 2013

Don't eat it(GMO Corn)

Is the genetically engineered corn you’re eating, “eating” you?

(Click link above to watch Video!)

Like a broken record but every week we watch Abby's gut continue to heal- anytime she gets the smallest amount of GMO corn(90 percent or more of all corn products are GMO)it triggers all sorts of awful GI issues-

Considering GMO corn is in formula,baby foods, baby snacks, wax on fruit, detergents, we are bathing, eating and drinking it from the time we are born.

We have new babies and toddlers and adults joining various corn allergy groups daily. The numbers are rising rapidly.

You are what you eat, and our bodies do not like genetically engineered foods.

Thursday, April 11, 2013

Gluten Free Burger Buns (dairy free, corn free, soy free)

(My baked goods are darker like wheat because I have been using the brown teff flour and not ivory,they cook identically just different color)

Making gf breads and rolls my preference has been "batter". I seem to get the best results and it is the easiest method. A friend from a group needed to go rice flour free and gum free on a her breads recently and as I thought about it, I realized that maybe we could avoid guar gum(soy based which she is soy lite but we haven't noted reactions,however anything to keep her bucket empty)and reduce allergens even if I am not quite ready to give up rice flour. We have been using ground chia seed(grinds in a coffee grinder or the single serve container with your ninja). It has worked "okay" for various recipes. We have avoided gelatin as it seems no matter what brand I use Abby has reacted, not as much as she reacts to soy though. So I figured odds are a teaspoon of gelatin might be less of an irritant then a teaspoon of guar gum. We will see. The buns turned out fluffy and tender and springy. They held together well. Toasted and slathered with no-tomato ketchup(search the blog for that recipe) and chicken boob I gotta say I did not miss the wheat at all.


1 3/4 cups gf all purpose flour(depending on humidity you may need an additional 1/4 cup flour)
1/4 cup glutenous rice flour
2 teaspoons ground chia seed(could substitute 1 teaspoon guar)
1 teaspoon unflavored gelatin
1 1/2 teaspoons baking powder(hains)
1/2 teaspoon salt(pink himalayan)
2 1/2 tablespoons sugar(domino's)
1 cup warm water
2 1/4 teaspoons yeast (red star )

1 teaspoon braggs vinegar
1 egg
2 tablespoons grapeseed oil

Preheat oven 375

Add 1-2 teaspoons of the sugar to the warm water and sprinkle on the yeast. Set aside to foam slightly.(proof)

Place 6 english muffin rings on a cookie sheet and grease with grapeseed or coconut oil.

In a medium bowl, whisk together the flour, ground chia seed, gelatin, baking powder and salt. Set aside.

In a large mixing bowl, blend together the remaining sugar, vinegar, eggs, and vegetable oil. Add the yeast mixture. Mix in the dry ingredients until smooth. This is thicker then a cake batter but not a dough. As you can see in the pictures, a tiny bit might ooze out the bottom of the english muffin form, obviously if it pours out it is too thin, you need to add more flour. Mine turned out a bit flat on top because they probably could have stood to be a bit thicker of a batter to get a rounded top- however I lean toward thinner batter for a softer bun.

(I know my pans are in sorrowful condition! I have nicer ones, but I have a cheap oven and found that two heavy duty cookie sheets layered offer more even baking,since they get a fresh cover of tin or parchment with each use I just ignore their sorrowful look!)

Spoon the batter into the prepared english muffin rings.

Cover lightly and let rise in a warm place until double.

Bake in a preheated oven at 375 degrees for 18-22 minutes.

Poppyseed Pear Slaw

As Abby's gut has slowly healed up this past year we have joyfully been adding foods back into her diet as she tolerates. After months of a very limited and bland diet Abby takes a huge pleasure in colorful,flavorful foods.

Poppy seeds and cabbage have been recent adds. Not something she eats everyday but tolerates very well now and then. Both poppy seeds and cabbage have values nutritionally. Poppy seed have, thiamin,folate, riboflavin, vitamin B6 and trace amounts of vitamin C, niacin and pantothenic acid.

Red cabbage is a terrific source of vitamin K. Also contains, c,folate,b6, calcium and other great nutrition.

If you have a corn allergy, you may or may not be able to tolerate various produce depending on the corn contamination. We have found locally grown produce and organics to have the least risk,though still risk. Sometimes we soak in cool water and baking soda and rinse well it can reduce surface contamination. We look for dirt,bruises - the more perfect looking the produce the more likely it has been treated with something that may contain corn.(and other chemicals we should not poison our bodies with.)


Poppy Seed Honey Dressing:
1/4 cup braggs cider vinegar
1 cup plain coconut yogurt(or dairy or almond plain yogurt you could use sour cream but we try to get those probiotics in where we can)
1/3 cup poppy seeds
1/3 cup raw local honey
2 teaspoons salt(we use pink for the magnesium value)
1 teaspoon ground black pepper

1 medium red(or green or both) cabbage, chopped or shredded
2 ] carrots, peeled, julienne or grated.
1 bunch green onions, thinly sliced(I cut with kitchen scissors)
1/2 cup minced parsley leaves,(flat leaf italian is the sweetest-the curly tends to be pretty but bitter)
1-2 asian pears(or apples, crisp pear of your choice), peeled, julienne

In a medium bowl, combine all the poppy seed dressing ingredients together until well blended. Set aside.

In bowl, combine the cabbage, carrots, scallions, parsley, and apples. Pour in the dressing and toss until coated. Refrigerate at least 1 hour before serving, mix the salad again before serving.

Read more at: http://www.foodnetwork.com/recipes/wolfgang-puck/apple-coleslaw-recipe/index.html?oc=linkback

Naan GF

(Tikki chicken,gf naan and spiced rice and veggies in the rice pot, coconut yogurt for dipping)

To be honest, these were an awful lot like super thick tortilla's, but they tasted great and went well with the theme of the meal. They were softer and more flavorful, but I admit not exactly the Naan you are missing.


1/3 cup water, heated to 110
2 Tablespoons sugar(or honey)
3 teaspoons yeast
1/2 cup coconut yogurt(I added 1/2 tablespoons braggs to the yogurt to thin it) or 1/2 cup "buttermilk" of your choice
2 1/2 - 3 cups all purpose GF flour(I added 1/4 cup glutenous flour to my mix to see if it would improve the texture, it seemed to, the Naan stayed soft and bendy even when cool,though like most gf products it got crumbly the next day)
1 1/2 Tablespoons ground chia seed( or 2 teaspoons guar gum)
1 1/2 teaspoons salt
1/2 teaspoon baking powder
1/4 cup grapeseed oil(or oil of your choice)
2 large eggs, beaten

First proof the yeast(yeast, sugar, and water)

In medium sized bowl combine 2 1/2 cups(reserving 1/2 cup if the dough is too wet) gf flour and ground chia seed,salt,baking powder

In large bowl combine the proofed yeast, eggs, oil and yogurt or buttermilk.

Now add the dried ingredients to the wet ingredients. Stir until like sticky mashed potato's. If the batter is too wet add more flour.

Allow to rest for 20-30 minutes.

I poured a bit of flour on the counter and grabbed a small handful of the dough(sticky dip your hands in flour) using a bit of flour as needed work the dough in your hand till it forms a ball. You can lay it on the counter in a bit of flour and gently press the ball into a thin flat disk(dough is delicate I tried to keep them about 1 inch thick or less) or you can do it like I did and using well floured hands pressed the dough into a disk between my hands.

In a large frying pan(I used a non-stick, but ceramic or caste iron would work great) heated on high place the disk of dough, using your fingertips(careful not to burn yourself!) press the dough as flat as you can, the dimples in the dough from your fingers are fine. You should notice after a minute or so the dough bubbling, flip and brown the other side. Repeat with remaining dough.

This recipe made close to a dozen for me. You may need to keep the flour out, depending on humidity whether you use a thin or thick yogurt you may need more or less flour. It should be just thick enough to be able to grab a handful and work it carefully with flour to keep it from getting sticky- too much flour and end product gets tough. The Naan cooks best on a hot skillet- we enjoyed the ones that were both thin and thicker.

Not exactly the Naan we are used to, but close enough that when dipping you will not mind the difference.

Wednesday, April 10, 2013


We finally sent off Abby's salvia sample a couple weeks ago.

For the last year as we have read about Mast Cell Disorders I found many patients were doing the 23andMe genetic/ancestry testing.

As the year past more and more populations were turning to 23andMe for testing.

Why? There are many reasons. For us, it was that though Abby getting the Mitochondrial Depletion diagnosis answers a couple questions it hardly answers all the questions about her health. It is only 99.00. Which is a couple of co-pay's for most American's.

When mitochondrial genetic testing turned nothing up, I figured why not?

After the last couple years just being in the Mito population gives you a crash course in genetics, so I doubt anything I find would either confuse Abby and I or alarm us. Apparently unlike some Dr. ordered genetic studies with 23andMe you can access the raw data which is usually filtered and removed for most ordered tests. That could be the overwhelming part. There are now many software programs that you can upload your raw data into and will help you sort it all out. I suspect the raw data will provide a lot more questions then answers as well, but in the various chronic illness groups folks are using that raw data and finding some extraordinary connections. I would hope that Abby's raw data may help be part of the answers so many of us seek.

Will it have any value- Who knows. It might. Actually it will, it will be one more stone we made the effort to flip and make sure we did not miss anything.

When we were debating whether to send in Abby's sample I was impressed at the list of conditions they scan for, it is lengthy. Their accuracy rate is rated well. At this point Abby has had so much genetic testing in her life the concern over privacy doesn't apply for her.

Added bonus, ancestry. We have a few loose threads in our family tree on both Derek's and my family sides. We have heard the family debate our entire lifetime about a few ancestors, it will be nice if this test throws some light on the skeletons in the closet. :-)

These types of genetic tests are priceless. With it taking months and months to get an appt with most geneticists,with the cost of co-pays, with the limited access to your own health reports- this test allows you to see inside your body with a short wait, a bit of spit and 99.00.

I am not expecting to learn anything about Abby we don't already know. Yet, 99.00 bucks to flip one more stone without her using her energy hanging out at Drs. offices, and car rides and labs- in her low energy world it is priceless.

Tuesday, April 9, 2013

April's looking Brighter

After a long month of flaring Abby is finally balancing back out. Now that the endless flares are near the end we are able to see some of the triggers. For whatever reason when she is the middle of a flare we are blind to the trigger, I suspect because at some level we panic worrying she ia slipping despite our dedication to project elimination, that worry that is lurking in the back of our minds that maybe this is truly out of our control consumes us when we see her in a flare. Then we have that light bulb moment and take charge again and ferret out the offending item. We keep trying various diuretics and we keep thinking Abby's body just hates meds LOL We think maybe we found more hidden corn and the new nephrologist pointed out that the ones she has tried are sulfa based- which may or may not be an issue but certainly worth considering based on her insane number of reactions. Abby's sister is sulfa antibiotic allergic and Abby reacts to preservatives so maybe? The New Nephrologist said that often those that are allergic to sulfa antibiotics are not allergic to the sulfa based diuretics and vice versa- just for that bit of information it made for a great visit. Abby had also started taking a vitamin D oil. She has been rubbing it on her skin religiously for months with no reactions, and since her D continues to lag we figured it was time to try it by mouth. After a week we noticed the flares last month had taken a turn for the worse. After consulting with my corn free group(guru's!) I found out the oil we used had lanolin- yep, Abby is allergic to wool. Go figure, right? For everything we try to add to help, more often then not it seems to backfire.

The new Nephrologist was terrific, and honest, and helpful. She "got" our hesitation to run to Drs over every little thing and was very supportive of the dietary changes. Abby's lab work indicated a terrific nutritional standing- Yippeee! Project elimination continues to help. Despite the proteins her function and labs show her kidneys are in good shape. Without formulas,vitamins, dairy,soy, gluten,chemicals and all the other junk that we assume as a population are best(fortified milk,rice,vitamins-bad for Abby!), her nutrition is better then ever. Without a good and CLEAN nutrition foundation Abby crashes faster and worse. So, Abby and I feel absolutely thrilled that chickpea tofu and coconuts(aka project elimination) has clearly made a difference.

The new nephrologist said Abby was the first she had seen with Mito- she said, they don't teach adult nephrologists about Mito. When she said that it was so clear to me the disconnect in care for Mito patients. She had quickly read a bit about it to try to be prepared and clearly she was under the impression that patients with Mito depletions don't make it to adulthood. There was no information about the many different types of depletions in the summary, or that a depletion can be genetic or secondary- there should be. At the same time, you have to wonder, why don't they teach Adult specialists about Mito? I mean clearly now for the past 10 at least or even as much as 20 years there have been plenty of adult onset patients. Our medical schools here in the states are generally also part of some of the biggest research hospitals. So if they are researching adult mito patients at the same institutions that are teaching Drs. why are they not teaching the future Drs about Mito? 1 in 2000 warrants a class or two you would think, right? Considering most pediatric mito patients don't die from Mito which means they are going to become adult Mito patients- makes you wonder doesn't it?

In a way though I am so grateful she had not seen Mito- because when she looked at Abby, she only saw a sick patient, not a Mito patient with no cure. Turns out there are plenty of "horses" vs "zebras" we could/should still rule out- at least if we finish ruling out stuff our hearts will rest easy that we have not overlooked anything.

We have a name of a Rheumatologist to try despite all the blood work thus far being mostly normal. There are oddball diseases that a Rheumy may have seen despite relatively normal labs. We have a name of a urologist so when Abby is ready to deal with that we know we have a good one to call.

I had to kind of chuckle this morning, for the first 15 years we fought and dragged and begged for them(drs) to help us figure out Abby. They find the depletion and that was it- they decided we had our diagnosis, and no need to look further. So what did we do after finally getting a diagnosis that kind of fit? Instead of the years of trying to find a diagnosis, we are now pushing to rule out the depletion as the primary issue. Realistically, Sara was preemie, we lost our second to hydrops,heart and liver issues at birth and then Abby- odds are genetically something is wrong but until we find a gene that absolutely declares "no hope" we keep looking. What if 10 years from now it turns out it was Mast, or something else that could be controlled? Could I possibly live with myself knowing we threw in the towel when my gut said not to? Nope. Admittedly, I am just used to the battle mode. 20 years of complicated babies,toddlers, children,teens- thus too many battles to count. That constant battle mode has shaped my views on the world. I have fought Drs, Public Schools, Gifted support, colleges- surely I must look for the fight like so many seem to thrive on the drama. Many days I wish that even for a few months I could be the type that just trusts the Drs, that just trusts the schools, that just goes with the flow- wouldn't my life be soooo much easier?

If my children don't justify "battle mode" I don't know what does.

April is looking better. !8, good nutrition, figured out a few more triggers. Despite the flares she did not lose as much ground as she normally does. Life is good for the Neumans.

I am finally accepting that I cannot ignore my gut just to make life easier- battle mode just suits me I guess.

Chickpea's and Coconuts is a better name then Project Elimination, don't you think?

Finally, I have dragged home a bunch of new and funky foods from my International Markets- should have a bumper crop of oddball foods being turned out from the kitchen, and if anything makes me happy, it is knowing that I can feed Abby and do it better then any Dr.

Saturday, April 6, 2013

Gluten Free Angel Food Cake

So about 4 yesterday afternoon Abby finally decided what cake she wanted for her birthday. Angel Food. My heart sunk. Out of all the things I have learned to bake with and without substitutions, I have NEVER made an Angel Food cake.. sigh. Turns out I did not have a tube pan either. Well actually I have 4 miniature tube pans(4 inches!)but not what I needed, so despite closets and cabinets brimming I had need for yet another new pan! So off I went shopping after dinner to grab what I needed.

I did some googling and gathered a whole bunch of tips. Fresh Eggs, medium peaks, patience and gentle folding in of the flour,make sure the flour is cake flour, and the most important was superfine sugar.

12 egg whites at room temperature.. Well that left me with 12 yolks! 3 or 4 I can whip up some pudding or ice cream- but 12? I ended up using 10 of the yolks for a double batch of lemon curd(I made a dairy free version using coconut oil instead of butter and the recipe is posted on this blog). Whether anyone wants the lemon curd with the cake isn't an issue, it keeps well in the fridge for 2 weeks and surely I will find something to smoother in lemon curd over the next couple weeks.

The recipes I studied were not gluten free, but I have found if it calls for 1 cup or less of wheat flour it is generally okay to swap straight across for gluten free. Most of the traditional recipes were consistently calling for 1 cup of cake flour. I measured 1 cup of my all purpose gf blend and removed 2 heaping tablespoons- I then added two heaping tablespoons of potato starch- that helps it be more similar to cake flour(or so I hoped!)

It turned out terrific- shockingly. Abby said she absolutely had faith I could do it, but I saw myself heading to the farmers market at dawn to wrestle up some more eggs- I was certain it was going to take at least 3 attempts :-) Grateful I nailed it the first time around.

1 3/4 cups sugar(domino's)
1/4 teaspoon salt(pink himalayan)
1 cup cake gluten free flour, sifted(remove two tablespoons of the all purpose gf flour and replace with 2 tablespoons of potato or tapioca starch)
12 egg whites ( room temperature though separate them when the are cold)
1/3 cup warm water
1 teaspoon extract of your choice(we skipped this, Abby is reacting to booze right now so my homemade version is out)
1 1/2 teaspoons cream of tartar
Preheat oven to 350 degrees F.

In the ninja or other high speed blender- blend sugar a minute or so(I split the sugar and did half at a time, about 30 seconds in the single serve cup) until it is superfine. Sift half of the sugar with the salt the gf cake flour, putting the remaining sugar aside.

In a large bowl, thoroughly combine egg whites, water, extract, and cream of tartar. Once combined, switch to a hand mixer. Slowly sift the reserved sugar, beating the whole time at medium speed. Take it to the medium peak stage, sift enough of the flour mixture in to dust the top of the whipped whites. Using a spatula and fold in gently. Continue until all of the flour mixture is incorporated.

Gently spoon mixture into an ungreased tube pan. Bake for 30-35(better a hair overcooked then under cooked,raw angelfood cake is icky!) minutes checking for doneness with a skewer(or a knife?). Skewer will come out dry when baked completely.

Cool upside down on parchment lined tray or cooling rack for an hour before removing from pan.

Easy Glaze

2 cups water
1 cup sugar
1 teaspoon clear extract(fine without!)

2-3 tablespoons potato starch plus 1/4 cup water.

In saucepan, heat 2 cups water, 1 cup sugar and extract. Stir and heat until all sugar is melted and it is a simple syrup.

Mix the potato starch(or tapioca or arrowroot) with the 1/4 cup water. Stir into simple syrup, stir rapidly as you slowly add. Heat until it thickens and remove from heat. Dip fruit or berries and chill on lined cookie sheet- transfer to cake when chilled. Alternatively pour glaze over fruit and berries (if you are making a tart etc.)you could also use a basting brush and brush the fruit and berries.

(Abby has always said she NEVER wanted to get older, so each year we randomly pick how old she is, as long as it stays in the single digits she is happy! LOL)

Friday, April 5, 2013

Nothing has Changed, she still would have NEVER been Diagnosed (18 years and still the journey continues)

If we were seeing the specialists today vs 2 years ago- she still would not have been diagnosed with a Mitochondrial Depletion without that second biopsy. Based on the patient stories I have read and heard, she would not even have been diagnosed with suspected Mito and because her labs were so normal she might never have had that second biopsy.

Normal CK over the years.

Normal Lactic acid

Normal Metabolic labs

No GI issues(until more recently and no tube)

No hospitalizations

Normal (exceptional) cognitive ability

No seizures

No failure to thrive

When I look at the baby pictures I can clearly see there was something terribly wrong. Just the fact that she could not hold her head up for more then a few minutes at a time till she was over two,showed a major issue. When I look at Abby now it is clear that she isn't well. Life time of hypotonia, fatigue, constant colds and flus, she folds up like a pretzel and watching her dislocate her shoulders can still stop my heart for a second. Then the bladder issues(big flare, thinking IC), the weird extreme allergies, the weird toenails, the scoliosis and kyphosis, the hair loss, the odd proteinuria and hematuria... the list goes and goes and goes.. The delays early on and then better and then fading away again at puberty.. sounds like Mito- but the labs would not back it up and they still would not today.

If Abby had not had that second muscle biopsy, we would still be getting passed around specialist to specialist. Honestly, if her kidney's had not started to show stress we would at a loss for a diagnosis at all. Those years of knowing something was terribly wrong(her undefined congenital myopathy diagnosis did not fit) and having the specialists just shrug their shoulders(or deny anything was wrong at all) and pass the buck were terrible- I feel for any family on the journey right now.

The only thing that kept us sane was that as a baby/toddler her Specialist team clearly recognized there was a serious issue. They did not blow us off when she did not fit into a tidy diagnostic box- they kept looking. So far, that team in New York was the only group of Specialists that "saw and acknowledged and pushed" to diagnose Abby. Since then it has been Derek and I pushing and pushing and dragging Abby Dr to Dr looking for answers.

When you read what you can find on the web about how Depletions are diagnosed( in the most recent publication I found without pay per view access )based on what I read a specialist would not know to look for a Mitochondrial Depletion. Even the Mito Specialists would never have guessed. Without that second biopsy we would not know today that something is wrong with Abby that the Drs. can no longer ignore.

Every other month or so I google looking for new information on depletions. Sooner or later someone will find new primary conditions that could cause a depletion and that fits Abby's symptoms perfectly. So far I haven't found answers to explain Abby,but what I have found again and again is that the criteria for a depletion syndrome has not changed.

In our mind that either means Abby is an exception to every rule or this depletion is secondary. Either way there isn't much applicable information out there to help us recognize what we should be doing for her. We at least have half our answers but there are hundreds and hundreds of patients out there getting blown off because their lab work and/or clinical presentation doesn't fit the textbook. Or, their symptoms don't fit a clinical trial, or a study.. Often Specialists won't even refer a patient to another Specialist.. we have been there and I can say with certainty it is a very special kind of crazy that parents experience.

The very Specialists who help define Mito as disease of energy with presentations in any given combination might look at a kid like Abby and say - Nope not Mito. Despite 2 or more organ systems, despite the obvious hypotonia and hyper-mobility,despite the life altering fatigue- the metabolic lab work was "fine."...

At least for other patients like Abby, nothing has changed in the past two years.

Houston still only has one(a geneticist at TCH who is also in charge of the EPI 743 trials for Texas but he is not as marketed or well known nationally or locally with parents at least)well known Mito Specialist. If that Mito Specialist is "unable" to help a patient or the patient is an adult, patients might find help at Texas Children's but patients are mostly still having to travel to other States to get diagnostics or care. Which is mind blowing that our massive MedCenter still under serves this growing population. I figure as the Government provides more funding for research on Mitochondrial Diseases we will see an increase in providers- at the end of the day it is ALWAYS about money.

The Walk for the UMDF raised fewer dollars then in previous years. Awareness for Mitochondrial Diseases is stagnant in our State, in our big MedCenter. In two years it seems there is less support then more.

There have been many days where I wonder if Mito is even a real disease? Since most Drs don't understand or recognize it. I wonder what other disease processes could cause the extreme and wildly variable constellation of symptoms..

In the past 2 years there have been gains. Targeted genetic testing for Mitochondrial Diseases(nothing turned up for Abby though),new research in how mitochondria impact diseases like cancer,autism, heart disease and more. The Medical Research World is recognizing that our mitochondria seem to be involved one way or another in a lengthy list of diseases. I am sure they will continue to uncover very important research that eventually will trickle down to patients suffering from mitochondrial diseases, but I am not holding my breath that it will be anytime soon.

When Abby see's a new specialist these days, we are always half tempted not to even mention Mito. It seems half the time they only see the Mito and feel she is "hopeless." Or the half of the time they have no idea what Mito is and refuse to change their treatment to make it as safe as possible. Oh and then that group of Specialists who think Mito is just another name for crazy. Abby's rather unique needs only complicate getting appropriate care. Having the Depletion label relieved the need to at least explain what is wrong with Abby, but it sure has opened a can of worms too.

We are so grateful that her Mito Specialist "gets" Abby. We are grateful for our Family Dr. We are grateful to the Specialists that are at least trying. To all those who fundraise, to all those researchers who seek answers for the sake of knowledge and not just the mighty dollar.

Abby turns 18 tomorrow around lunchtime. During that first week I had her home after she was born, my gut was screaming something wasn't right,but I had no idea of the long journey ahead. I had no idea that despite vast knowledge we still don't know the half of it when it comes to the human body. Not in my worst nightmares would I think that we would spend all 18 years of her life trying to even find a diagnosis that explained everything. Despite being a human pincushion and worse (Abby says it is horrifying how barbaric diagnostics still are)she is everything I could dream of when thinking about a daughter. After 18 years we finally understand "what doesn't kill ya, makes you stronger."

Hopefully when I post about Abby's 19th Birthday we will know more, but until then we live and continue to do the best we can. I can hope as the years unfold and I look back that I will be able to say that her 18th year was the year that the medical world caught up. Until then what else can you do but move forward? There are many others with a much more difficult and complicated journey then Abby's- and we remind ourselves daily, it could be so much worse- we are the lucky ones.

Thursday, April 4, 2013

Ube Cake- gf,cf,sf,df,nf,etc.

Ube is purple yam. I picked up a package of dehydrated ground purple yam. A quick sponge cake cut in half filled with ube was a spectacular purple color! The package has been in the pantry for awhile now while I thought about how to use it.

A very bland taste- I think pairing it with a strongly flavored fruit would make it sensational. Anyone who cleared their homes of artificial flavors, chemicals and corn(Add Abby's zillion other allergies) and we have a very limited selection of color for desserts. We have stuck to finding naturally colorful foods and this purple yam is definitely going to be appreciated.

This cake is super easy to make. The yam really doesn't have a lot of flavor, and when we make this again we will likely use vanilla(I have added vanilla to the recipe below) or other flavor to brighten and cut through the super sweetness. I think I will likely pair it with Kiwi or other tangy fruit. As we tasted as we made the cake we all agree this is best when completely chilled.

The nutrition of the dehydrated purple yam is minimal. It is a source of fiber and iron, but not much else.

Already planning purple bread, purple noodles.. purple ice cream!

Ingredients for the ube cream:

1 c. rehydrated Ube powder(directions on the back of the package on how to rehydrate)
1 1/2 c. condensed coconut milk
1/2 c. palm shortening
1/2 c. powdered sugar-
dash of salt
vanilla extract or other flavor if you want.

Mix the ube and condensed coconut milk together in a pan. Over low heat and constantly stirring, cook until thick 10-15 minutes). Let cool completely. A good time to make the cake part of the recipe.

Cream the shortening with an electric mixer until fluffy. Add the cooled ube,salt and vanilla and beat again until combined. If not thick enough(it will firm up considerable when chilled)blend in 1/4 cup of corn-free powdered sugar at a time.

The sponge cake:

3 medium eggs
1/3 c. sugar
1 tbsp. potato starch or tapioca starch + allpurpose gf flour to make a total of 1/2 c.

Preheat the oven to 400°.

Line a 13" x 9" (jelly roll pan) with baking paper. Whisk the eggs and the sugar together until pale, thick and fluffy. Sift the flour and potato starch(or tapioca) over the mixture. Fold carefully with a large spoon just until combined. Pour into the prepared pans and even out the surface with a rubber spatula or knife. Bake for 10 minutes or until the top springs back when touched.

Turn out onto a clean kitchen cloth. Do not peel off the lining paper yet. Leave to cool.

Now that the cake and filling are done you can combine.

I cut the cake in half. One piece of the cake on the bottom, use 3/4 of the filling and cover. Lay second piece of cake on top- Chill completely. Then cut the cake and use your reserved and chilled ube to pipe the top of each square of cake. Serve!

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