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.

Wednesday, January 29, 2014

Secondary Kidney Disease- Can be caused by Allergies.

Abby's kidney issues were what sent us down the Mitochondrial Disease Diagnostic Path.

The kidney biopsy looked like Minimal Change Disease but more so, and the clinical findings were more in line with Secondary FSGS. Lately I have been reading that for some patients MCD can turn into FSGS, so it would make sense to find conflicted findings.

In the world of pediatric nephrology many families are told again and again- Allergies cannot cause kidney disease.

They CAN cause kidney disease.

I have found article after article after article that Allergies(food/environmental) are a proven cause of Secondary Minimal Change Disease. All you have to do is type in "Allergies and Secondary Minimal Change Disease" tons of research dating well back into the 80's. Proven again and again and again. So why are we told it is impossible?

Which means, if your kidney disease was caused by Allergies if you eliminate the Allergens from your environment you can stop the progression of further disease.

Not common, but since Secondary FSGS due to Mito is near impossible? Far more plausible that Abby has secondary MCD.

Abby clearly has neurological symptoms. kyphosis/scoliosis(neurological),poor muscle tone, the depletion, and myopathy findings on biopsy, so I understand the train of thought.

The frustration is that when most Specialists are given the option of blaming Allergies vs Neurological? They down play allergies again and again. In general, most Specialists we have seen do not understand that Allergies aren't just hay fever and anaphylaxis. How many patients are passed around to every Specialty before finally getting referred to an Allergist(FYI, not just any allergist since many of them have no understanding of the systemic impacts either,you need to find a Specialized allergist/immunologist that gets complex allergies)?

It is possible that the Depletion is secondary to the Mast/Allergies. It is very possible that her kidney disease is due to her Allergies. Since she was born with the myopathy/poor tone I cannot blame that on allergies, but it really makes me wonder.

Abby's symptoms for Mast and Allergy look more autoimmune. They look more viral. They mimic Mitochondrial Disease symptoms. At this point I am sure the fatigue and some other issues are now due to the depletion, but I cannot help but wonder- had we intervened sooner, could we have prevented much of the damage we see today? Had we lived the extremely clean diet we do now, could we have prevented the Mitochondrial Depletion entirely?

I know I shouldn't cry over split milk. Yet, as I meet more members on various Mast, and Allergy groups I see patients again and again that are far sicker then many children diagnosed with Mito that I follow.. It leaves me puzzled. I need to make sense of it. I cannot help but wonder exactly how many children could be healthy instead of sick if we understood Allergy/Immunology better?

The rate of food allergies is skyrocketing. We now know that what we eat can affect our Mitochondria. We now eat massive amounts of chemicals in our western diet. We are exposed to fungicides,pesticides(remember, Roundup is a mito toxin, and it is in everything you eat since hidden corn is in everything you eat,for example; Elecare elemental formula is 55 percent corn syrup solids),dyes,flavorings(many of which are banned in other countries) we are raising/growing our foods in depleted soils and our food doesn't have the same amount of nutrition it used to have..our meat is fed tons of antibiotics and hormones to make them unnaturally fat quickly for the best profits. We are exposed to motrin,Tylenol, antibiotics, immunizations from the minute we are born. (When I was kid we only had aspirin which was only used in an emergency since it is dangerous in children.) We did not get antibiotics, despite being sick constantly I likely did not have antibiotics at all as a child. I can actually remember my brother getting Strep and it was a HUGE deal because it was the first time I remember someone in my home taking antibiotics. Abby and Sara had more antibiotics then I can count just in their first 5 years. We did not get the immunizations they do now. We got very few.

I am curious to understand more about how our Mitochondria and Mast Cells and Immune systems interact.

Could we be preventing serious diseases in some children simply by focusing on diet? Simply by acknowledging that Allergies can cause severe systemic disease?

IF we had continued on an allergen free diet throughout Abby's childhood and puberty(she had "outgrown" her allergies supposedly)could we have prevented the depletion and kidney disease?

Yes, I think so.

She still would have had the myopathy, but that was a cake walk and easy to manage. She would never be "healthy" but she sure could have been "healthier."

The big question is now,

Can we "heal" the depletion? If we remove all the insults and calm her immune system will her mitochondria increase again? IF we control the allergies/mast/immunology can we protect her kidneys?

I think anything is possible. We are certainly going to give it a try!

We know there is more to it then that with Abby. My gut tells me there is something unique going on with Abby that makes her so crazy sensitive. I know it is not that simple. Realistically, the damage probably cannot be undone at this point. We can hopefully prevent anymore though.

Cure in our Cupboard? Probably not.

Body damaging chemicals in our Cupboards? Probably so.

Tuesday, January 28, 2014

Ranch Cheese Spread (dairy free, gluten free, corn free, soy free, nut and seed free)

1 cup homemade coconut yogurt

2 teaspoons dehydrated egg white

1 Tablespoon melted coconut oil

1 teaspoon dill weed
1 teaspoon parsley flakes
2 teaspoons finely minced dehydrated onion
1 teaspoon Braggs Apple cider vinegar
1/2 teaspoon pink himalayan salt
1/4 teaspoon fresh ground pepper

(1 teaspoon fresh ground horseradish-optional)

You can strain coconut yogurt at room temperature(I use a piece of cotton muslin and put it in a yogurt box,but you can easily set it in a bowl to catch drippings as well.) for 4-6 hours and squeeze some of the whey out of it. The more whey you remove the firmer your end product will be.

Mix all the ingredients with your strained room temperature coconut yogurt.(The egg white powder and all the herbs absorb more moisture and the melted coconut oil gets nice and hard when chilled, makes a firmer cheese spread)Taste as you mix, you may like more less of the seasonings.

Pack into container of your choice(I used a round custard cup for an easier release)

Allow to chill in the fridge overnight.

I place the bottom of my container in hot water for a few seconds to help release my cheese from the custard cup I used. I ran a knife around the edges and tapped it upside down on to a plate. I did have to work the knife around the edge a couple times to get it out, but it did eventually release.

If you safe sunflower seeds they would be delicious pressed to the outside of your cheese.

Monday, January 27, 2014

No-cook Coconut/Fig Bars(gluten free, corn free, soy free, nut free, dairy free)

1 cup of dried black mission figs stewed

1/2 cup coconut manna(coconut butter) Homemade or Tropical Traditions

3 Tablespoons honey(or more or less to taste and texture you could use maple syrup instead.)

1-2 Tablespoons egg white powder(easy to dehydrate your own so they are corn free, finding safe corn-free protein powder is tough)

1 cup fine coconut flakes

salt to taste.

First you want to stew your figs. I throw a cup of the whole dried figs with stems cut off in a 2 cup measure- cover the figs with boiling water, cover and allow to steep for 30 minutes, they will soften and plump. Feel free to add vanilla or spices you like to them while they steep, we left them plain for these. Drain and place figs in blender.

Also add the honey to the figs and blend until pureed.

Then add the coconut manna(you could also use coconut oil instead).

Add coconut flakes, egg white powder and salt(I am heavy with the salt, I like the contrast of sweet and salty).

I lined a loaf pan with parchment paper and pressed the "dough" into the pan. I sprinkled some more flakes on top. If your dough seems too "loose" feel free to add more coconut flakes and work them in, if it is too dry and crumbly, you need to put it back in the blender and add more coconut manna or coconut oil. The dough should stick together and will be soft, when the coconut oil/manna/butter firms up in the fridge your bars will become hard.

Place in fridge for a couple hours until firm. Cut, store in fridge.

Caramel Puffed Lotus Seeds(gluten free,soy free, nut free, corn free, dairy free, )

These are just fun. (Plus a reasonable source of B6, Thiamin, folate,some riboflavin and niacin) It has been an epic battle for 2 years to find enough foods with enough vitamin B(she is low across the board with B's)so anytime I find anything she tolerates that contains B I get right on working it into a recipe. So many with Mast,kidney,Mito and other diseases really struggle to get B in their diet. If Abby could tolerate any B supplement we would, but all of them are corn tainted. (Injections are corny).

The puffed lotus seeds taste about like puffed rice, not much flavor. They are chewy like rice cakes,well styrofoam like texture. I have wanted to buy some forever since I know Abby does great with lotus seeds but all the brands I found were with salt or sugars which are often corny. Finally found some naked ones.(still, if you are corn allergic you know, just because the label looks safe,doesn't mean it is) Naked we weren't excited,however, if you candy them? Magic.

Our theory is always when in doubt with a new ingredient, add fat,sugar and salt. 9 times out of 10 it works!

Each puffed seed is on average bigger then a piece of popcorn so these make for just terrific snacking.

Caramel Puffed Lotus Seeds

1/2 c. coconut oil
2/3 c. brown sugar
1/2 c. real maple syrup(we use grade B)
1 teaspoon pink himalayan salt(or less to taste)

in a small saucepan, mix sugar,coconut oil, and maple syrup. Bring to a boil(full boil and boil for 2 minutes and remove from heat quickly- if you think it smells too hot, remove after 1 minute. But, at least 1 minute at a boil.

Pour over the 2 1/2 cups puffed Lotus seeds that in a large bowl(glass or metal only because plastic will melt). Using a large wooden spoon, gently stir the puffed lotus until all of the pieces are coated.

Keep stirring until most of the sugar mix is absorbed by the puffed Lotus seeds.

Spread the coated puffed Lotus seeds(and any liquid left in the bowl) onto a greased cookie sheet.(lined with parchment works best!)

Bake for about 15 minutes at 275 degrees. Stir, should be getting foamy. 15 more minutes, stir. Then 10-15 more. Pull out of oven. There may be some sugar puddling around the puffs but just stir for a few minutes and as the sugars cool it will adhere to the Lotus Puffs.

Store cooled leftovers in an airtight container.

Sunday, January 26, 2014

Shallot and Fennel Confit(basically onion and fennel bulb jam)

We have not tried this one with Abby yet,but with Derek working at eliminating corn,gluten and chemicals from his diet, I have been trying some new recipes to serve his "snacking" needs. With the super bowl quickly approaching I am trying to make sure I have some very tasty options. This stuff is delicious! I have eaten fennel bulb and of course fennel seed in the past, but I cannot remember ever buying fennel bulb to cook with at home before. This is definitely a make again.

The crackers are called, Le Pain de fleur Buckwheat Gluten-Free Crispbread. They have them in quinoa,buckwheat and chestnut based crackers. Abby has tried a few nibbles of the buckwheat crackers and I know some who are corn sensitive that do well with them. I would call them "corn-lite"(the salt and sugars are always a risk of corn contamination) so they may be an option for some. I love them. Delicious,light and crisp. My only complaints would be they could use a bit more salt and the price is a bit steep. But, packaged food is such a treat for us to find even close to safe enough that a box of these in the pantry seems like a very naughty and luxurious item. Worth the money. I buy ours from Amazon.

1 fennel bulb(chopped equal to the onion slices)
1 onion(sliced)
2 shallots finely sliced(you can do all shallots,instead of using onion, but I only had a couple in the fridge)
2 cloves fresh garlic finely minced.
1 tablespoon grape seed oil or coconut oil
1 teaspoon fennel
1 teaspoon ground cumin
1/2 teaspoon allspice(or cinnamon, Abby cannot have cinnamon so we use allspice)
1/2 cup Braggs apple cider vinegar
1/2 cup brown sugar(or palm, or coconut- guessing honey would work fine as well)

Put sliced fennel bulb in a pan with water and boil until tender.

While the fennel is boiling, add sliced onions,shallots and garlic to another pan with the oil and cook until soft.

Drain cooked fennel bulb and add to the softened onion,shallot and garlic. Also add spices,braggs and sugar. Cook about 30 minutes on low until it thickens and starts to combine and seem more "jam" like. Remove from heat now salt to taste and then place in jar to keep in the fridge. I find this tastes it's best after about 3 days resting. If serving with crackers allow to warm to room temperature before serving.

serve with your favorite crackers, tortilla or use for a great pop of flavor in beans,rice(especially handy when cooking Indian inspired dishes)

Thursday, January 23, 2014

Donating Money: MitoAction or UMDF in 2014? MitoAction wins this Year!

It is that time of year again. The UMDF is holding it's annual walk. ( You already know I think the "walk" is silly, how do patients who have no energy to brush their teeth, manage to do a walk without ending up sick? Just saying! I like the Stay In Bed Day concept much better! )

There are many non-profits today that are assisting patients with Mitochondrial Disease, so who do you donate to?

This year my money went to MitoAction.

Why? Because when no other organization was willing to stand up and support Justina(and other's like her) MitoAction did.

That took courage, bravery, and a terrific moral compass. They are the ONLY organization that took such a public stand.

That earned my trust.

Great Job MitoAction!

Not a thing wrong with UMDF. They are a massive organization when compared to MitoAction and do a lot to help raise awareness and research dollars. We can all agree they do their part.

The NEED is for a patient to never feel alone on this endless journey. I cannot imagine having my child taken from me because I sought care for her Mitochondrial Disease, can you? Yet, it happens every month.

Thank You MitoAction!

For such a small, no frill's non-profit, you are making a MASSIVE impact improving the lives of All Mito Patients.

Jam Bar's or Jam Cake : " Flop or Adventure?"

I am addicted to the old cookbooks. I have a special fondness for the 40's,50's, and 60's. They used a limited amount of pantry ingredients with whatever was in season or local in some ingenious ways. Usually, I am always thrilled with how easy it is to substitute and the usually common sense and easy to create recipes.

Except for this one, which turned out to be an adventure! :-) Not exactly what I had visualized! Still it was worth a share, if anything to warn folks that if they see this recipe in an old cookbook, it might be a bigger project then anticipated and could very well not turn out exactly as visualized!

This recipe I spotted a few months ago. Basically a sponge cake(think jelly roll) but you bake it right on the jam. Really. What could possibly go wrong?

You smear the jelly roll pan with a mix of jam and coconut oil(they used butter.) and then pour the cake right over the top of the jam and bake.

I knew when I made this it could either go really wrong or really right. It certainly is lacking in attractiveness and would never be fed to guests! IT sure was fun to make though! We made a royal mess. I had stockpiled a few too many eggs so between the cake, the marshmallow icing, I managed to use up a whole lot eggs.

If you need to get your sugar on? This is the way to go!

Honestly, with practice I think this could have turned out better. I did not quite spread the jam evenly. Nor did I bother to spread the cake batter evenly across the jam. This lead to uneven cake, which made trying to stack it comical. Our solution was to cover it in 2 inches of marshmallow frosting! So, we got an almost square blob of delicious raspberry/coconut cake. Maybe if I had fresh berries and a scoop of ice cream I could have hidden some of it's gloriously sweet ugliness.. but it is what it is, and it tastes good! :-)

Next time, I will just make a jelly roll out of it, pretty,easier, and tastes the same.

Not sure I am going to try this one again. I think simply making a sponge cake and spreading jam on it after it bakes would be easier, tidier and prettier! :-) Here is the sorrowful evidence in pictures, recipe follows.


Preheat oven to 400

1/4 cup coconut oil(or butter if you can)
1 cup jam(I used raspberry chia jam)

4 eggs
3/4 cup sugar
1 tsp vanilla
3/4 cup gf all purpose flour
1 tsp baking powder
1/2 tsp salt

Filling:(I had a cup of leftover homemade rice milk vanilla pudding in the fridge, I mixed in some fine coconut shreds and a tablespoon of melted coconut butter for that extra richness)

I used marshmallow frosting(also known as 7 minute frosting), which was honestly sugar overkill!

Sprinkles: I make Abby sprinkles by piping royal icing,once dry I break into little pieces. I mix homemade cherry juice/syrup into it instead of water.

Melt coconut oil in jelly roll pan. Spread jam evenly with the oil across the pan.

Beat the eggs till lemon colored and foamy. Slowing blend in the sugar. Then blend in vanilla

blend in remaining dry ingredients. Spread batter evenly over the jam in the pan. Bake at 400 degrees for 15-18 minutes.

Remove from oven and let stand for a couple minutes.(not too long or the jam won't release!)

after running a knife around the edges of the cake, flip over onto another pan, or parchment paper covered board. I tapped at the pan a bit hoping it would slowly release. After a couple minutes I peaked and the corner was starting to release, so using my spatula I worked the rest of the cake loose.

I cut the cake in half. At this point you could flip the two jam covered sides face to face and you would have "jam bar's".(you could fill with pudding or not) Allow to chill and ice then cut. Or, you can do as I did and cut each half in half. spread some pudding on 2 of the four pieces. Jam side to Jam side. I then carefully stacked the two. So a total of 4 layers. I think had I chilled it, I might have been able to use a knife and squared it up some(or not).

Thumbs up for sugar overkill, thumbs down for poor construction!

Wednesday, January 22, 2014

The Same Symptoms;Very Different Diseases

Mast Or Mito

GI issues
reactions to dental treatment
bladder involvement
poor sleep quality
vitamin deficiencies(B and D's especially)
Immunological disorders
autoimmune disorders

The list could be much longer, but these are the ones that we are familiar with as far as Abby and the various work-ups and issues she has dealt with up to now.

You can see how it could be very hard to know which is which..

IF you are what we call a Shocker, that is someone who when they react go into shock and need an EPI shot or ER care. I suspect you would be worked up for Mastocytosis or MCAD before anything else. Shocking is a far more definitive sign Mast disorders. Abby has a few reactions now that are immediate that we have been nervous about as she did as a child, but for the most part we can avoid them. Many with a mast disorder will also have a lot of various skin findings- lesions,rashes,hives. Abby gets hives and skin issues but very mild and very transient compared to many.

What if you are a "Leaker" though? A leaker is someone who after being exposed to a "trigger"(food, environmental, illness etc)doesn't shock. Instead they have a cascade of symptoms that mimic a ton of diseases. Abby is a "leaker" usually. Add to that, many Leakers have delayed reactions(up to 72 hours later) you start to realize that diagnosing Mast is potentially more complex then Mito. For many of Abby's reactions they do not present like an allergy at all. She can get a headache,fatigue,constipation,poor sleep for a week, those sure mimic mito symptoms. Certain foods like corn trigger dysautonomia like symptoms. Heart racing,low BP, difficulty with too warm or too cold..

Abby has a few things like scoliosis/kyphosis, low muscle tone that clearly are not Mast but neuromuscular. I often wonder if she had seen a Mast Specialist before a Neuromuscular specialist if she would have ever had the second biopsy that found the mitochondrial depletion? On the other hand, her Mast symptoms are far from clear cut, it is easy to understand why no one thought to explore Mast before Mito.

There are a few "definitive" labs for Mito. For the most part there are many who have more then a few iffy findings, clinical findings, more then 3 systems involved and everything else has been ruled out. For Mast disorders there are few definitive tests. For Mastocytosis it is far more clear cut. Tryptase,bone biopsy, C-kit mutation(give or take). For MCAD disorders though, at times the diagnosis can come down to simply whether or not your symptoms resolve/improve with treatment.

We are starting to think that neither issue is primary for Abby.. neither explains everything. Both a Mitochondrial disease and a Mast disorder can be secondary disease processes to an "unknown" primary. On one hand, the thought that there is still an unknown disease process with Abby gives us a great deal of hope, if we can figure it out and it can be treated it could make a massive difference. On the other hand at this point it is unlikely there is anything else "known" going on.. More and more it is just some very special blend of genetics that are unique to Abby.

I am so grateful that we figured out the Mast involvement- it looked nothing like a reaction or an allergy, it really looked a whole lot like Mito, we got lucky. Knowing about the Mast allows us to keep Abby safer and more stable. I cannot help but think of all the Mito patients out there and wonder how many of them also have a secondary Mast cell disorder? I know quite a few now- how many more are out there? Knowing is not going to "cure" them, but it sure might help stabilize their Mitochondrial Disease..

Mito or Mast can be primary, or secondary or primary or secondary to each other, secondary to other diseases- complicated, right?

Keep looking for answers folks, sometimes we find them.

Monday, January 20, 2014

Bird Seed Granola(oat free,gluten-free, dairy free, soy-free, nut and seed free, corn-free)

Abby calls this "Birdseed" Granola! "

She cannot have oats so we wait until we have little bits in the bottom of bags of all the grains and coconut we use and have saved up and we throw it all in, anything goes! Which means we get something a little different each time which keeps it interesting.

Buckwheat groats(toasted)
Millet(toasted or puffed)
fine shreds of coconut
dried longans
dried figs(diced)
(I keep adding until all total I have aprox. 5-6 cups of dried "stuff" and dried fruits)

I used a combo of 1/4 cup honey and maple syrup combined
1/2 cup brown sugar(domino's)
1/2 teaspoon salt,(pink himalayan)
1/4 cup grapeseed oil(Tj's many are using )

(roughly, I don't measure much for granola!)

Then heated in a saucepan till well combined and syrupy. Then I tossed my "birdseed" with the sugary mix.Pour onto parchment lined cookie sheet then baked at 225 for about 1 hour. I stirred about every 15 minutes. Allow to cool to room temperature. Pack it up airtight.

You can always use your favorite granola recipe and just exchange a mix of buckwheat and other "neat" substitutes to replace the oats.

Sunday, January 19, 2014

Spicy Country Breakfast Sausage

This isn't for Abby as she cannot eat pork, but since Derek is also removing the junk and corn from his diet, this is perfect to keep him working hard on eating a much cleaner diet.

If you have safe pork(some don't tolerate pork that has been fed corn, and the greater issue is that pork is rinsed with a corny citric acid when butchering) you can make your own breakfast sausage- no chemicals! Tastes 100 percent better too.

In Houston there are a few local farmers that are now avoiding feeding their hogs corn or soy. They are finishing them with barley or other grains. The cost is higher, but the quality and safety make it well worth it.

Sausage is about not wasting. Save the cuts of fat you trim off your pork and freeze in a ziplock bag in the freezer. When you get enough saved up, grind up some sausage.

I doubled the recipe so I don't have to make them again for at least 6 months. It does make a mess and cleaning either electric or manual grinder is time consuming,so plan on a big batch when you have a couple hours.

Spicy Pork Breakfast Sausage Patties:

2 pounds pork butt, diced into 1/4-inch pieces(or boneless pork chops or the bits and pieces that you can buy at a reduced price as long as they are meaty)
1/2 pound fat back, diced into 1/4-inch pieces(pork belly works, or bacon if you made some already! Sometimes you can buy pork fat scraps cheaply)
2 teaspoons pink himalayan salt(you might want to start with just 1 teaspoons until to fry a piece to try,we like the extra salt though)
1 1/2 teaspoons freshly ground black pepper
3 teaspoons sage leaves(fresh works just finely chop)
3 teaspoons thyme leaves(fresh works just finely chop)
1 teaspoon finely chopped fresh rosemary leaves
2 teaspoons light brown sugar
1/4 teaspoon fresh grated nutmeg
1 teaspoon cayenne pepper( we use 1 1/2 teaspoons)
1 teaspoon red pepper flakes(we 2 teaspoons,we like some heat)


Combine diced pork with all other ingredients and chill in freezer until half frozen(my grinder prefers half frozen meat). Using the fine blade of a grinder, grind pork.

Now take about a teaspoon and fry it up- very important to taste and make sure it is seasoned the way you like. You may want more salt or more spice or more sugar.. Now adjust ground pork to taste.
Form into large compressed sausage on a piece of tinfoil,roll up and shape till it looks like a tootsie roll then freeze just till firm(not solid! You will never get it cut!). Unroll and slice in 1-2 inch thick slices.
Refrigerate and use within 1 week or freeze. For immediate use, saute patties over medium-low heat. Saute until brown and cooked through, approximately 10 to 15 minutes.
I slice and place my sausages on parchment and layer in a sealable container for the freezer. That way Derek or Sara can grab a slice(or two or three) for breakfast(snack,lunch dinner?) to cook when he/she is in the mood. This sausage works well mixed into ground hamburger or ground chicken for hamburgers, biscuits and gravy, or mixed into ground meat for meatloaf,cooked and sprinkled on pizza- and of course blended with other ground meats for meatballs. Adds terrific flavor.

Don't toss the funky shaped ends that you cut off the roll(or the random crumbs), shape and cook- after all, it is important to do quality control!

Friday, January 17, 2014

Tamarind/Pear Fruit Leather

Tamarind-Pear Spiced Fruit Leather.

Think Sweet Tart candy. I hate to use the word "healthy" because when you eat this the last thing you think is healthy, but tamarind is a marvelously "healthy" treat.

More then ever I am so grateful that we have added Tamarind to Abby's diet. Beyond the fact that it has a fab sweet/tart flavor profile it is just packed full of nutritional goodness! Vitamin C, Iron, Magnesium,niacin, calcium- the list goes on and on. Not recommended for those with salicylate sensitives.

Tamarind can be found fresh but it must be peeled,"deveined" and then the pulp removed from the large seeds, a lot of work. We have been buying tamarind pulp. It is a large block of sticky goodness. So far Abby has not noticed any reactions so I am fairly confident it is corn free enough that at least Abby doesn't react. In order to use it I cut it into pieces and soak in a bit of hot water and stir and stir. This creates a paste. I then push the thick paste through a fine strainer to ensure a smooth paste.

Another positive to the fruit leather is that you can rehydrate it with hot water to a "paste" which then can be used for cooking or baking. It also makes a terrific easy to eat travel food.

This fruit leather was easy:
Tamarind Paste
Fresh chopped pears
Puree smooth in high speed blender and then dehydrate.

I did about 2 to 1 tamarind to pear. I sweetened and spiced to taste.

We transfer the fruit leather from the dehydrator sheets to parchment paper and roll. Vacuum seal and throw in the fridge or freezer.

Thursday, January 16, 2014

Corn-free Carob CupCakes(gluten free, soy free, nut free, dairy free, chemical and color free)

We are still not completely certain about carob being truly safe for Abby, but we decided after a break for a few weeks to give it a try again. So for the record, I don't have a truly safe brand to recommend. But we have tried both Frontier and NOW brand with equal results. Rapunzel cocoa powder for those who can have chocolate has been well received in general by the corn-free community.

She had her monthly dental appointment which no matter what local is used has always caused a reaction. Sometimes the reaction is pretty major, sometimes more mild. I figured that these might cheer her up and at least convince her to eat something before crawling into bed to spend a couple days sleeping off her dental appointment. On one hand if it is possible she is having a mild reaction to carob this is pretty stupid to feed it to her when her bucket is already overflowing, on the other hand if the ship is going down you might as well, right?

If you cut the recipe in half it makes 12 cupcakes.

1 1/2 cups sugar
1 1/3 cups all purpose gluten free flour
1 cup carob powder(medium roast we are still trying different brands)(equal substitute for corn-free chocolate try Rapunzel cocoa powder)
2 1/2 teaspoons baking powder(Homemade or Hain's)
1 teaspoon salt(I buy large pieces of pink himalayan and crush them and grind ourselves)
1 teaspoon guar gum
2/3 cup grape seed oil
4 large eggs
1 1/3 cups water
2 teaspoons vanilla extract. (homemade is the ONLY corn free option)

Preheat oven to 350

Mix sugar,flour,carob,baking powder,salt and guar gum in a large bowl.

Add oil,eggs,water and vanilla extract and mix well.

Fill cupcake papers 3/4 full and bake for 17-22 minutes.

Cool and ice.

Chocolate icing
: corn-free powder sugar, carob powder,Lyle's golden syrup(just a teaspoon it will provide a sheen when the icing sets)vanilla extract,a dash of salt, and water. Mix. You want it thick enough it won't roll off, but thin enough it will settle smooth across the top of your cupcake.

White swirl icing for top
: powdered sugar,vanilla extract and water mix to a paste that you can pipe.(if you want color to be pure white, skip the vanilla)

Filling: 7 minute icing.(also called marshmallow icing) I used a larger tip piping bag and filled from the bottom. Caution, slowly back out with tip as you fill, these will blow out easily. 2 egg whites, 1/2 cup granulated sugar, pinch of salt, 1/8 teaspoon cream of tartar. Place in double boiler- using a whisk stir egg white mix while water at a full boil. Once the sugar is melted, remove from heat. transfer to bowl and whip with electric mixer until fluffy and cooler. Spoon into piping bag.

Monday, January 13, 2014

Softest Ever Gluten Free Tortilla's(dairy free, corn free, soy free,nut free,egg free)

With Abby currently now yeast free, I had to dig in and figure out how to make a gluten free tortilla that we not just liked but that we loved. That was easy and fast. That was stretchy and flexible. That could hold up to sauce in enchilada's. That would not tear filled with veggies. I have made a lot of tortilla's this past couple years. Some are "okay". With gluten free we just felt lucky to have something even though not so great, but these? A miracle. Perfect. Better then any wheat tortilla I have ever eaten.

I bought an electric tortilla maker. Yes, there is such a thing. Yes, I am so glad I bought it.

I bought the cheapest one I could find on Amazon.

For as much as I love it today, the first couple tries were miserable. It did not come with any directions,recipes, hints or tips. The gluten-free recipes I had used previously,failed horribly in my new toy.

Finally I went googling(which I should have done the second I realized I was over my head)and found a website called The Tortilla Press Store. They had directions on how to use an electric tortilla maker, and recipes.

With a few tweaks, we figured out how to make the best tortilla's ever. Better then the fresh hot tortilla's at Lupe Tortilla's(very popular Houston Mexican food chain).

A little different in that they look almost more like crepe's. The mouth feel is delicate like a crepe, but they are stretchy and strong enough to wrap a sandwich, breakfast burrito, heck, we liked them so much we eat them plain and hot of the press.

Like all things gluten free, these really are best the 1st day. They are still decent the second if you steam them for a few to soften them. The second day they work great for making enchilada's.

We have been making a lot of these. Every other day if we can find a reason to make them. Starting to think we might not miss yeast one bit. Sara hates gluten free anything, and she would be thrilled if I made these daily. That good.

Here is our tweaked version of the gf recipe for the tortilla maker from The Tortilla Press Store:

2 1/2 all purpose Gluten Free Flour
2 teaspoon's guar gum(NOW brand)
1 teaspoon granulated sugar(Domino's)
1/2 cup tapioca starch ****
1 tsp. Pink Himalayan Salt
2 ½ tsp. Baking powder(homemade or Hain's)
4 tbsp. Coconut oil(tropical traditions)
1 ¾- 2 cups warm water(Abby has been using Crystal Geyser safely)


Preheat tortilla press on highest heat setting with lid open.

In a large mixing bowl, combine dry ingredients with coconut oil until it is slightly crumbly.

Add in warm water until the dough reaches a wet and sticky(like stretchy brownie batter) consistency and look. This may require you to add more water than what the recipe calls for.I usually add the water and let it sit for 5 minutes and then assess to see if it needs more water. When you do place some batter on the press you want a soft blob that just barely holds it shape(wetter is safer then dry, I have used it where it was like very thick pancake batter and that worked better then too dry.)

The first time I used this recipe, I did sprinkle some gf flour on the press, but the second and third time I skipped that and they did not stick and worked just fine.

Once the tortilla press is heated all the way (you may want to grease,I did the first time I used it,but did not need to grease it again). Place aprox a very generous tablespoon of batter(less then 1/4 cup,but not much less) on the tortilla press (not quite center,a tiny touch more toward the hinge,though the center worked fine once I got the hang of it). Close the press and push down hard(this is the tricky part,expect to screw up a few times until you get the feel for how fast and how hard) on the handle one time, you will hear a squealing sound as steam escapes around the edges. You want the the sound of the steam escaping, but you need to avoid pressing so hard that you hear it "pop". The pop means the tortilla will be ripped. Immediately lift the pressing handle and raise the lid a bit to release steam pressure, then gently close the lid and allow the tortilla to cook for approximately 6-7 seconds. Then open the press, flip over the tortilla(I used my fingers, but you gotta be careful and quick, these will burn ya steam plus hot!), close the lid to cook for another 5-7 seconds. done.

I stack them right on top of one another. Be careful when you pull them apart. They are almost sticky, but so stretchy they come apart nicely. Mine tend to be slightly crisp when they come out(usually to one side)but stacked on top of each other by the time you have finished the whole batch, they will be relaxed,soft and amazingly elastic.

**** The extra tapioca starch is key. My all purpose blend doesn't contain enough tapioca to make a tender and stretchy tortilla.

Saturday, January 11, 2014

Good News for Justina

She isn't home, but CPS failed to gain full custody. That is a huge victory.

She will need to remain hospitalized until the next hearing on Feb 4th, but she will be under the care of Tufts(her Mitochondrial Specialist's hospital.)and no longer at Boston Children's Hospital.

Justina's health is very delicate based on media reports from the neglect while at BCH and lack of care for her Mitochondrial Disease.

I am hoping now that she is receiving the care she needs, the appropriate care, she will stabilize.

I truly hope once she is transferred from BCH she will be able to see her friends,parents and sisters again whenever she needs them.

It's not over. As I type this post there are other families being targeted by CPS across our Country. There are Drs. determined to prove that Mito doesn't exist. That are willing to use the patient at any cost to make their point, instead of being professionals and going to their peers or medical boards.

Be aware of your parental rights. Make sure you trust the Specialists that you or child are seen by. Network in your local Mito Community to find out which Drs. have called CPS on a Mito family, or which Hospitals are hostile to Mitochondrial Disease patients- Everywhere all across America there is or has recently been a family like Justina's who has suffered horrors and the destruction of the family and finances simply because a Dr. did not believe they had Mito and decided their opinion was valid enough that destroying a family was justified. When Drs. call CPS, they are well aware of what CPS is going to do a family, they need to be held accountable for bad judgement.

Your Nurses, Teachers,hospitals, dentists, caregivers - know them. Make sure they agree, Mitochondrial Disease is real. Make sure they agree with your Mito diagnosis.

Hoping Justina stabilizes quickly and is home with her family very soon.

Friday, January 10, 2014

Our Hearts are With Justina Today.

For all those following Justina's story, today is supposed to be the final court date to make a determination on whether she goes back to her parents.

Today will reflect on on the entire Mitochondrial Disease population.

IF she is released back to her parents it means that Mitochondrial Disease is accepted by the public as a disease(BCH seems to feel with that if you have no gene mutation you cannot have mito. A large number of hospital feel the same way.)

If she isn't? Expect to see more Mito families suffer this same horror.

Just the fact that they would lock a teen up on a mental ward for a year who is not a risk to herself or others? Is abuse. Frightening to think if you disagree with a Dr? They have the power to destroy your child and your family.

Hoping for the best for Justina.

Monday, January 6, 2014

Finally, the Perfect Pink

Gearing up for Valentines.. I have been trying various berries and fruits to get the perfect pink. We have gotten various shades that were pretty but not quite the pink we wanted.

Cherry juice. That got us this great color.

Using frozen cherries from this summer I simply added a bit of lemon juice and sugar and allowed them to reduce on the stove until the color was deep and the syrup/juice started to thicken(not too thick!). Once it had cooled to room temperature I used it to replace the milk in a favorite frosting recipe. Perfect pink, and the added bonus was a great flavor.

I probably could have held off on experimenting with these until closer to Feb, but it was so cold in Houston today and Abby caught a little cold. Sugar whether we like it or not is especially helpful when she doesn't feel well.

I used my Fast Cookie recipe so these were so easy and fast to make. You don't even have to roll the dough, it is a very forgiving gf cookie dough.

1 egg
1/3 c grapeseed oil(trader joe's is being used successfully by many in the corn allergy population)
1 tsp vanilla(homemade using potato or coconut or grape vodka)
1/3 c sugar
1 c gluten free flour
1 tsp baking powder(Hain's)
1 dash salt

1 Beat egg with fork and mix in remaining ingredients.
2 Drop by spoon on ungreased cookie sheet.Stamp each cookie with a glass that has oil on bottom of it and dipped in sugar each time. Bake at 400 until slightly golden around the edages.(about 8 minutes)

NOTE: Or pat on board sprinkled with sugar and cut with cookie cutter. transfer to cookie sheet with spatula.

Saturday, January 4, 2014

Hiding Away

Despite the second bad reaction to the SubQ Abby is holding up.

She has has some reasonably good days this week besides getting yet another cold. If I compare her today to where she was last year? She has climbed back there. Slowly, very slowly but she is steady. For awhile we were losing some ground, but it was some new reactions causing issues I think- we removed more and she has gotten back to baseline. Another reason I am far more confident that the Mito Depletion is secondary. Meaning that treating the primary is key.

This last round of SubQ seemed to cause her to react to yeast. With the first treatment she lost a few foods so this was not unexpected. On one hand I am major bummed that just as I conquer a few great gluten free yeast bread recipes for the bread maker she can no longer have them. On the other hand, who really needs yeast bread? It has opened a new Challenge for us. Irish Soda Bread and tortilla's are working great for her "bread." I have been flipping through finding some new versions to try and of course to modify for Abby. Call it entertainment and an opportunity to find a way to incorporate more nutritiously dense foods that her system can handle.

The toenails of course are looking rough from August, they had just started to grow again and I suspect this last round of SubQ reactions will slow them down for awhile. On a positive that means less nail cutting, right? There is always a positive. If they aren't growing the cuticles don't get as irritated(when the nails stop growing, when they start again there seems to be a raw edge that irritates her cuticles as it grows past) so we don't have to worry as much about infections, tumors, etc. Some hair loss, but that is pretty standard with a bad reaction these days. This time around she got the most unique hives. Usually when Abby reacts, she gets one big hive on her cheek, usually the same spot each time. This time she woke up 2 days later and looked like she had the measles! Thankfully they faded away in 24 hours, but left her itchy for days. She has gotten more hives in general since then. Completely random, like a big one just pops up on the side of her foot but will fade away. The next one will flare for a couple hours somewhere else and just as quickly fade away. Her kidneys are finally settling down so that is a good sign we have seen the tail end of it this week. The pinprick rash isn't as big this time, but we found it on her arms the other day, though it seem to have disappeared after a day. I tell ya, her body sure has it's own way of handling things. :-) The only other kind of new thing we have noticed is that she has had some increased issues with her circulation. The other day she was standing there talking to me and the front of her legs were nearly black, the back very pink- she moved around for awhile and it disappeared. Weird, but she for the last year had a lot of mottling and she has always had a hard regulating her body temperature. I wish I could capture in picture the vivid violet color her nails turn after a reaction, it is nearly neon, really a lovely color except nails should not be that color! :-)

The reaction was "worse" this time since it caused her oxygen saturation to drop and some serious heart racing, but it seems to have worked out of her body quicker- bonus!

Not sure what we will try next.

Thanks to my corn support group I have a lead on a couple compound pharmacies so we can try one last time at trying to get some meds clean enough for us to make the final determination on whether it is the fillers or the meds. I suspect some meds she will react to, but surely not all?

She see's her immunologist next month.

Pretty much baseline right now, and we are being very careful to keep it that way.

We are on heavy duty lockdown around here. Lots of hand washing, good sleep, good nutrition. Avoiding reactions like the plague since they seem to contribute to her body being unable to fight off all these colds. Abby doubling down on rubbing in Vitamin D oil on her skin,Vitamin D is essential to fighting off the flu.

Right now with so many people with the flu or getting the live vaccine and shedding the flu all over town leaves us hiding away avoiding people and their germs as much as possible. Frankly, I am shocked I did not bring anything home when I was out Christmas shopping. It was shocking to see really sick kids with glossy eye's,fever flushed cheeks, green snot, and awful coughs being hauled through TJMaxx and Marshall's while Mom's were shopping for new sheets. If you are sick and fevered? Stay home. Jeez. I felt like I was getting the plague every time we went out. I know people get sick and odds are the ones who don't look sick are likely the carrier's, I guess I am just old fashioned. If you have fever or green snot? Please don't share it! :-)

No flu shots for our family. I have posted before about "why". A really good reason is that Abby reacts badly. Beyond that? Last year it provided on average a 26 percent coverage- but that was only for certain age groups. Over 65? Prevented no deaths. Under 6 not a lot of coverage. Too much guess work, too little research and not enough results. When they have a better success rate with less potentially dangerous side effects the rest of us might consider it. For now? Hand washing, covering your mouth,good food , good rest and vitamin D have the same track record.

Abby has been pushing to keep moving more this last month or two. There is certainly a balance, but I have noticed an improvement in not just how much movement but the power behind it. It has been a pleasure to see her move. If she squats down she still get's stuck, she can get up once she fully sits down, but still cannot pull back up from a squatting position. Honestly? Now a days I have seen plenty of teens that could not pull themselves up from a squat and they are perfectly healthy, I am opting not to worry about it anymore.

Taking a deep breath and hoping all of us make it through the rest of the winter.

January 10th may bring a decision on Justina- I am hoping that the Judge opts to believe Mito exists. If he doesn't send Justina home he is saying that Mito is fake, not real. The battle will be twice as hard for so many in the Mito Community. There is a lot riding on this decision on how the public and Medical world will perceive Mito in the future. My fingers are crossed that Justina will be home with her family very soon.
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