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.

Tuesday, December 30, 2014

Wrapping up 2014

It has been a good year.

Abby's world moves very, very slow. It is the small things that truly count around here.

With the positive news on her kidneys, I think it has truly renewed our vigor to keep moving forward seeking answers and better yet, solutions.

Like everyone else we have a lot of goals for 2015 and if we manage even 1 or 2? We will come out ahead.

For 2015 we are working on "operation exercise'. Now, before you start visualizing marathons, speed walking,and the gym ,I need to explain we define "exercise" much differently around here. Abby did receive a treadmill to kick things off. Part of Abby's daily ritual's include a lot of pacing around the house, and we are always curious exactly how much walking she is accomplishing, so if she does her pacing on a treadmill she and I can figure that out. We have already run into a few issues. With Abby she has a lot less tone in her upper body and even at her healthiest when she walks she has never really swung/moved her arms while doing it. As a baby/toddler she was never able to catch herself with her arms when she tumbled or fell.No crawling or pulling herself up. For years we would have to place her on her feet before she hit the ground walking. I remember finding her patiently sitting in a hallway or her room waiting for someone to set her on her feet. As she got older it seemed to not be an issue, but with the treadmill it clearly is an issue. On the treadmill that means she has to hang on while she walks. Now, if you have used a treadmill you know that when you walk at a slower pace and hang on you end up using a different set of muscles and might actually fatigue more quickly then a nice pace while arms are free and moving. Abby is brilliant at developing compensation methods and the treadmill has exposed a glaring one. So, one of our goals is to figure out "how" to get those arms to join in while she walks. Sounds simple enough, but I suspect after a lifetime of learning to walk and balance exceptionally well without them, it is going to be a big challenge! Going for therapy isn't an option. She rarely leaves the house and there is simply no telling when she will have a day where she feels well enough to even get dressed. Thankfully, there are some great resources online that ought to get us pointed in the right direction without risking a major flare/reaction/germs.

Exercise also includes the hula hoop. You know how they say that each person has a special gift? Well the hula is Abby's. Like a duck to water, when she steps into that hula it is like magic. It defies gravity. She can talk, walk and keep that shiny pink loop defying gravity without a wrinkle in her brow or a drop of sweat. When she pulls it out, she has our attention! Best entertainment ever and I still have no idea how she does it! :-) So those loosey goosey joints and poor muscle tone have provided a gift. It is pure magic. So, we need to try to figure out how to get that hula to provide more of a workout for her upper body. Her worst muscle tone issues are her torso, shoulders,arms,neck.

Starting to wonder if some youtube lessons in belly dancing would be beneficial- why not?

Folding laundry. Reaching to put glasses on the shelf. Picking up dog toys(my poodles make 2 year olds look tidy!). We consider all of these very good forms of exercise for Abby on good days. Extending her arms and using her upper body are definitely area's that she struggles with as far as endurance.

Then on the bad days? Pulling back her covers on her bed. Brushing her teeth. Climbing into bed. Letting me wash her hair- are all heavy duty forms of exercise for her when she is at her worst. All things most of us do without even thinking.

So, this year we will track what she is able to do on good days, and on bad days. See if we can add a few new tricks in that might help her strengthen her body up some.

As far as Project Elimination? Well, this last few months have been brutal. Abby lost sooo many of her foods. She is down to just peaches for a fruit(I did put some up in the freezer this past year thankfully). She still can do most root veggies but not much green. We lost "spicy" and she lost her red peppers and all peppers. Carob which was iffy is an official fail. On a positive she has hung on to her grains, and most proteins so not all was lost. This year we will have to try to reintroduce some of these foods, she has to have some of them in order to improve/maintain her nutritional gains. I am leaning heavily on herbs(fresh and even dried herbs have a shockingly good nutritional profile)for now and hoping as winter ends(in Houston come Feb spring will be setting in)and spring starts we can either find more "new" to her foods or try some of the ones we lost this past year. Overall, compared to many she still has quite a spread of foods which helps prevent me from panicking.

As far as her array of oddball issues? Toenails are looking pretty good right now. Her feet look pretty good in general. The weird rashes seem to come and go (the hickey like ones). Our best guess would be heparin release from Mast cells, since nothing more alarming has turned up in blood work. This past month or so she has had a few issues with patches of numbness on her legs, neck and face. They seem to be resolving on their own which means I am not going to fret about it. Hoping it was just her spine pinching something(we have a lot of spine issues in my family). Over the past couple years we have noted she gets what we call a "pet hive" on her face. Just 1 hive and it comes up in the same spot every time. Usually just this time of year. Oddest thing. This year it changed locations. Last year on her cheek, this year on her temple. It seems to come and go at random and come spring/summer it will disappear. Her hair while isn't thickening much hasn't got any thinner and actually did a little growing, another positive. She has had growing issues with her bladder and we are watching closely wondering at what point we should opt to see if we can find more answers. Since she tolerates no medicines or supplements we find going to the Dr. to simply confirm there is a problem and no way to treat it is a epic waste of her energy, our pocketbook and the Drs. time. Not too mention at least 1 out of 2 Drs. don't believe she reacts to everything and tend to get either pushy or argue. Somehow about half of Drs. usually just assume patients are clueless, dramatic, lazy,and insist on torturing Abby to prove to them that yes, when she says she reacts to EVERYTHING she isn't kidding. Not worth the risk unless we know her life is in definitive danger. Speaking of definitive danger, her oxygen desats are becoming fewer and fewer. Since the SubQ fiasco it has been an issue. Definitely still experiencing drops, but not as bad. Before she ran a nice steady 98 or better most of the time, now we are happy with 96 or better. She and I talked about seeing a specialist when she was dropping into the low 80's and occasional high 70 but again, her body has opted to self correct- good. She does keep an eye on it though. Sometimes when we think something has resolved, it hasn't.

Hopefully this year we will find more definitive answers to "why" she reacts to medicines and vitamins/supplements. Even better if we can find a way to get around it. On one hand, over the past couple years I have been shocked to learn that the medicine we take to fix a problem can often cause another set of equally troubling health problems. On the other hand, sometimes you just have to take one. Considering the various health issues she deals with,the fact that Abby has managed for years now without any medicines is remarkable. Our biggest worry is if she were to get a major infection- what would we do? If we can get past that this year I think both Abby and I would feel relieved.

My gut still says the Mitochondrial Depletion is a secondary issue as are the kidneys. Maybe this will be the year we figure out the Primary!

I have a good feeling about 2015! If we move forward even a little bit this year? It will be another successful year.

Thursday, December 25, 2014

Coconut Cream Pie (gluten free, dairy free, corn-free, soy free, nut free)

In the past I have used more of a pudding filling but this time tried a pastry cream base- Much better! This will be the official go to recipe from now on. It is a favorite of both Derek and Abby.

Coconut Cream Pie:

1 baked gluten free pie crust.

My favorite gf pie crust recipe:(single crust)

1 1/4 cups Gluten-Free All-Purpose Flour
1 tablespoon sugar(C&H or Domino's organic cane sugar)
1/2 teaspoon guar gum(still using NOW brand)
1/2 teaspoon salt(pink himalayan)
6 tablespoons cold palm shortening(tropical traditions)
1 large egg
2-3 Tablespoons cold water(less or more depending on your flour blend)

Mix dry ingredients. Cut shortening into flour blend. Add egg and enough water to form a ball.

Roll crust out between two sheets of parchment paper. (if the dough seems sticky, sprinkle the parchment with gf flour and roll the ball before covering with second sheet and rolling out.)

Peel the top parchment and flip into pie pan, carefully peel parchment off. Flute edges and prick bottom with fork.

Place in freezer for about 10 minutes until well chilled.

Bake at 350 until lightly brown about 15 minutes.

Cool before filling.


1/2 cup organic(domino's or C&H) sugar
2 large eggs
1 large egg yolk
3 tablespoons all purpose gluten free flour
1 1/2 cups fullfat coconut milk(homemade or safe for you canned)
1 1/2 cups sweetened flaked coconut (Tropical Traditions.To sweeten- a bit of oil and hot water and sprinkle with powdered sugar. Mix well. done!)
1 teaspoon vanilla extract(homemade)

For filling:
Whisk 1/2 cup sugar, eggs, egg yolk, and gf flour in medium bowl.

Bring coconut milk and sweetened coconut to simmer in a saucepan over medium heat.

Gradually add hot milk mixture to egg mixture, whisking the whole time. Return to the saucepan and cook and stir the whole time until cream thickens and boils about 3-4 minutes.

Remove from heat.

Mix in vanilla extract. Transfer cream to bowl. Press plastic wrap directly onto surface to prevent formation of skin. Chill at least 2 hours and up to 1 day. Once chilled place filling in crust.

Before serving top with coconut whipped cream and some toasted coconut.

Wednesday, December 24, 2014

Merry Christmas!

A good Christmas Eve for us, no one is sick this year! Abby could be better, but NOT sick!

Lots of baking to do today, pies are our favorite holiday dessert so later today will get busy. We do prime rib roast and yorkshire pudding for dinner but Abby doesn't tolerate prime rib roast, so I make a gf yorkshire or two without beef fat and she eats chicken. Works out just fine.

This year is definitely a better year for our family. We all feel stronger and optimistic.

Something wonderful about a New Year coming, a chance to scrub last year and start fresh.

Wishing everyone a very Merry Christmas!

Tuesday, December 23, 2014

It is all about the Pan -Irish Soda Bread (Gluten free, yeast free, dairy free, soy free, nut free, corn free)

With Gf bread I find it is often about the pan we chose.

I found this red loaf pan(picture of pan at bottom of post) at Ikea last year. It is longer, more narrow and taller then a standard loaf pan and works terrific for yeast-free,gluten free bread. Works great for gluten free french bread too.

The narrow forces the bread to go up, and comes in handy since with gf it is usually a softer dough and it tends to spread vs gaining height.

There are some pans specifically made for gf baking, but if you keep your eye's open, you would be surprised by all the pans available that would work as well and are usually cheaper.

This recipe I have done many variations on and we are quite happy being yeast free with it. It stays moist and flexible and tastes delicious. Once stale I cube and dehydrate for croutons or stuffing or grind the dried cubes for bread crumbs.

Irish Soda Bread

4 cups gluten-free flour blend
2 Tablespoons sugar(coconut or organic cane sugar,I use Domino's or C&H)
2 teaspoon baking soda
4 teaspoons baking powder
1 teaspoon guar gum(you could probably skip and increase psyllium)
1 1/2 Tablespoon Psyllium husk powder
1 teaspoon salt(pink himalayan)
2 egg (I use eggs but suspect an egg sub would work)
2 Tablespoons grapeseed oil(melted coconut would work I think)
2 cup buttermilk or milk of choice (1 use 3/4 cup coconut yogurt mixed with 1 1/4 cup water use whatever is safe for you)
1 Tablespoon braggs apple cider vinegar

1. Preheat oven to 375 degrees. Lightly grease loaf pan.

2. Mix all dry ingredients in a bowl.

3. Add egg,buttermilk(in my case yogurt +water),oil and mix to form a soft, sticky dough.(you may need a bit more flour or a bit more milk depending on your flour blend with my flour blend I tend to need about 3-4 tablespoons more milk)It is not quite a dough but thicker then a thick batter.

4. Add vinegar last and quickly mix in.

5. Place in greased pan. Wet hands with water and smooth top to look like a loaf(higher in the middle). Use a wet knife and cut a deep cross into the top. Dust with gf flour.

6) allow to sit on the counter for about 10 minutes. This allows the baking soda-vinegar to provide a bit of lift before hitting the heat of the oven.

7) Bake at 375 for 35-40 minutes.

8) allow to cool, slice and store in airtight container.

*** I also cut this recipe in half and bake in a 6 inch round pan or in a couple of the mini loaf pans.

Monday, December 22, 2014


King Soba Organic Black Rice Noodles.

Abby has eaten them off and on the past couple years. She hasn't reacted to black rice or to the sweet potato/buckwheat but I don't know of any other corn allergic person who has tried them so consider them corn-lite. Proceed with caution.

These noodles have a terrific texture. They cook evenly. They hold up well soaked in a tasty sauce. I use them in soups.

We celebrate the few items I don't have to make for Abby. :-) Not that I mind making pasta for her, but it sure is a treat to open up a package and just boil.

This was just chicken meatballs with a golden leek sauce. The sauce was grapeseed oil, gf flour, homemade chicken broth, homemade coconut yogurt, salt and leeks.

Fast food and good food.

King Soba Noodles on Amazon

Monday, December 15, 2014

Roasted Chickpea Tassie(gluten free, dairy free, corn free, soy free and nut free)

Yes! More chickpea's! :-)

Abby doesn't tolerate nuts or seeds and we love roasted chickpea's. We found that yet again, they replaced nuts perfectly in this recipe.

I used our favorite gluten free pie crust recipe and just increased the sugar and water to make a cookie dough like texture so it would shape nicely in the mini muffin tins. Worked like a charm!

This is a fun one to let the kids help on.. great for OT getting the dough rolled and then carefully pressed.

Admittedly, a bit time consuming but based on the rate they disappear, worth it.

Preheat oven to 325


1 1/3 cups gluten free All Purpose Flour
1/2 teaspoon salt(pink himalayan)
1/2 cup palm Shortening(Tropical Traditions)
1 egg
3 teaspoons sugar(C&H or Domino's Organic Cane Sugar)
3 to 6 tablespoons ice cold water

1) In bowl mix flour,salt,sugar. Cut shortening into flour mix. Mix in egg and water. You want it the texture to be like a rollout sugar cookie dough.

2) Roll balls about the size of a marble(little bigger) and press into the bottom and sides of a mini cup cake pan. I put the ball in and press straight down and then work it up the sides(patiently).

3) Place in freezer(important for proper baking!)

4) These also work fine in regular sized muffin tin,but we do love the mini's- one perfect bite of goodness.


1/2 cup Salted roasted chickpea's(here is the link to my melt in your mouth roasted chickpea's)
1 large egg
3/4 cup packed light brown sugar(corn-free or make your own with cane sugar plus a bit plantation blackstrap molasses)
1 tablespoon palm shortening(Tropical traditions)
1 teaspoon vanilla extract(homemade)
1/4 teaspoon salt(pink himalayan for us, but use whatever salt is safe for you)

In bowl, mix egg, brown sugar, palm shortening, vanilla extract and salt until smooth.

Place 3 roasted chickpea's into the bottom of each mini cupcake(remember make sure it is chilled first!). fill with the filling mixture.

Bake at 325 for 18-22 minutes.

While still warm gently run a knife around the edge. Then allow to cool completely before trying to remove from the pan. Store in airtight container.

Saturday, December 13, 2014

Chickpea Divinity(corn free, soy free, dairy free, nut free)

I haven't tried the homemade cane syrup on this one yet.

How can you have Christmas without Divinity? Don't cringe! It doesn't have to be that funky tasting pink and pale blue puffs our grandmother's made.. and honestly, I always did secretly like the stuff! :-) Though I miss pecan's using the roasted chickpea's is a wonderful substitution.

Make it fresh. Divinity tastes great fresh, but if you leave it for more then a few day's it will start to taste like Grandma's!(Starting to wonder exactly how far in advance they used to make this stuff!)

4 cups sugar(domino's or C&H organic cane sugar)
1 cup Lyle's Golden cane syrup
3/4 cup cold water
3 egg whites
1 teaspoon vanilla(homemade)
2 cups chopped roasted chickpea's(my recipe here)

Combine sugar, golden syrup, and water in pot. On medium heat stir until sugar dissolves. Then place candy thermometer in and do not stir anymore. You want it to reach 250 degree's.

While you are waiting for it to hit 250 degree's, whip your egg whites to stiff peaks. I recommend a large bowl, when you add the hot sugar it will swell up a lot!

When the sugar hits 250 remove it from the heat and slowly drizzle into the egg whites while you whip. Add vanilla and get set to mix and mix and mix. I use a hand mixer on high. When the divinity starts to hold it's shape(as the mix cools it will start to hold it's shape)quickly mix in your chickpea's and then spoon onto parchment paper. Let it sit for a couple hours until completely cooled and set. Store in airtight container.

Thursday, December 11, 2014

Medically Kidnapped- Maybe Your Child is Next..

While I am grateful Justina was reunited with her family it is clear she is still suffering serious consequences to her health from the lack of appropriate care,stress, and emotional damage from being alienated from her family, friends and education.

In the last few months the number of cases of children being medically kidnapped has exploded. Here are a few cases I have been following(if I have not summarized correctly my apologizes, please drop me a line so I can correct and make sure the right information gets out there.)

Newborn twins and their 1 year old brother because the family home birthed the twins(healthy)and declined going to the hospital. They also were using natural products for the oldest child's dry skin. These children are home again with continued "supervision". Yesterday a headline hit the National Media here saying that the UK recommends women home birth and avoid hospital births. hummm.

The sisters in AZ ( A miracle for two sisters) who were given feeding tubes and other interventions by a Dr. who according to reports on the support pages was fired then suddenly CPS showed and CPS immediately rehired the Dr. who the family had fired and he has reversed his treatment plan completely. This has been ongoing for months. The family courts put a gag order on the Mom who complied until recently. There are rumors they could seek her arrest for speaking publicly despite the gag order which isn't legal anyway. She hasn't been allowed to see her children in months. When her child was dropping insane amounts of weight and showed up to a visit covered in bruises the Mom reported the abuse and shortly after had her visitation revoked.

Then Isaiah Rider- truly a horrific case of CPS medically kidnapping. Currently he is 17 and still not receiving appropriate treatment. His right to a Pastor has been denied and despite him being in mind blowing pain from his medical disorder they decided to slap a security ankle bracelet on him- hospital staff told him, "they do it to everybody." When was the last time you had a security bracelet slapped on you or your child while at a hospital? CPS kidnapped him when his Mom requested a transfer to another hospital that has a promising treatment for his pain from his medical condition. At age 10-12 a child can pick which parent to live with during a divorce, a 12 year old can be certified as a babysitter for a newborn and at age 16(15 even?) a parent has the right to allow their child to get married. At age 16, 17 Military recruiters are combing through our teens trying to convince them to join and risk their lives when they turn 18 to protect our Country. So, why in the world would they feel this sick 17 year old needs to be removed from a loving family who is fighting to give him the best future? If you would like to help get Isaiah home please check his facebook page, Team Isaiah.

Another case in Canada again about disagreeing about a diagnosis popped up this morning.

There are other kidnapped children- an 8 year old little boy with suspected Mito..

Then here is a link to the HSLDA press release about a 4 year old and her brother who were kidnapped because a caseworker looked at the 4 year olds blood sugar log for her type 1 diabetes and decided she was being neglected. Yep, some caseworker who has no medical expertise. Even after the child's specialists, the CPS chosen hospital and Drs all declared the child was very healthy and the parent was doing a terrific job following the treatment plan for the child"s type 1 diabetes the courts and CPS were still not willing to return the children or hear the medical evidence. Lucky for these children their Mom had joined the HSLDA when she opted to home school. HSLDA has done a remarkable job defending them. I believe it was over a month before the children were returned to their Mom. Considering someone who commits a DUI may have no jail time.. or many other even violent crimes never see jail time, 30 days to separate young children from their Mom is forever. However,that is record time for a return! Most innocent families can expect it to take YEARS if ever to be reunited with their children. If you home school please consider joining HSLDA. If you would like to help HSLDA fight to preserve our Parental Rights there is a link to donate in the link I provided above. HSLDA has an outstanding history of supporting homeschool families. I was relieved to see their willingness to acknowledge this growing threat to the American family and our Parental Rights.

No one is safe right now. These families are diverse. No common threads beyond their children have medical disorders that have all been clearly diagnosed. There are many theories/opinions as to "why" there is this uptick in "parentectomies" as the Hospital paid CPS workers like to call them.. from the fact that the State/County gets a yearly bonus for each Foster child in care yearly and I read today if those children get adopted from foster care they continue to get a yearly bonus until the child is 18 even though the child is no longer in their custody. Then there is the medical trial theory. Research and drug trials need children, when families decide the high risks aren't worth it they have to find children somewhere.. There are loopholes in some states that allow Foster children to be experimented on even if it is high risk or gains are not clear. Then the theory that our government understands that our strength as citizens comes from being in strong families. Destroy the family and it makes it easier for us to depend on the government then ourselves. At this point this goes way beyond Dr. arrogance though I am sure that has played into a few cases. It doesn't matter "why" because the fact is it is wrong. They are destroying children. They are destroying families. These families lose everything. Who can afford 200 dollars an hour attorney's for 2 years at a time? I know I cannot.

Most attorneys recommend their clients remain silent about any disputes with CPS. That leads me to believe the number of families suffering medical kidnapping is beyond alarming.

Know your Drs. Know your Hospitals.

As parents we have the right to take our children to Drs. to either get another opinion, or to confirm a diagnosis, or to find a diagnosis. Don't let the Medical Systems deny your child the right to better health. Drs and Hospitals have NO RIGHTS to our Children. They give opinions- that is it.

This is America. Our freedoms are being stolen as are our children.

Take a stand.

Candied Coconut Macaroons(gluten free, dairy free, egg free, soy free, nut free)

Even having to do a little more to prep the ingredients these are still one of the easiest cookies to make for the holidays. You might have seen these topped with a half a cherry(last year I used some frozen cherries) but Abby isn't tolerating cherries any longer. You could also top with a few almond slivers.

These are sticky, sweet with a little bit of crunch. Hands down Abby's favorite holiday cookie.

Candied Coconut Macaroons:

2-1/2 cups flaked coconut(you can sweetened the flakes if you prefer we use Tropical Tradition flakes and I do sweeten ours)
1/3 cup all-purpose gluten free flour
1/4 teaspoon salt(we use pink himalayan)
2/3 cup sweetened condensed coconut milk (1 1/2 coconut milk, 1/2 cup sugar, 1 teaspoon vanilla,simmer till 50 percent reduced)
1 teaspoon vanilla extract(homemade)

Preheat oven to 350

Combine all the ingredients

Drop by teaspoon onto parchment lined cookie sheet(use parchment! They will stick like crazy to anything else)

Bake for 12-15 minutes until lightly browned. Allow to cool completely before transferring for storage.

To store I keep them in an airtight container layering with parchment to prevent them sticking together.

To sweeten coconut flakes:

Coconut flakes
corn-free powdered sugar
grapeseed oil

Mix some powdered sugar(a couple tablespoons for 2 1/2 cup flaked coconut) sprinkle about 1 teaspoon grapeseed oil and 1 teaspoon water over the coconut flakes. Mix well. They should be sticky but not soggy.

Wednesday, December 10, 2014

Mast Cell Activation Syndrome and Mitochondrial Disease

To my delight awareness of the potential connection between the two diseases is spreading like wild fire.

When we first suspected a mast issue for Abby a couple years ago, we thought she was "unique".

We know there is an EDS and Mast connection, and we know there is a Mito plus EDS connection. It appears we now know there is a Mito plus Mast connection.

So many in the Mito community have drug sensitives, food reactions, unexplained symptoms.

Of course now my question will be, "Which came first, the chicken or the egg?"

On a positive if you can find a Mast Cell Activation Specialist there are treatments. We have found that by removing triggers from Abby and preventing reactions she has a level of stability. Her kidneys have stabilized/improved. No major setbacks.

There are many "low histamine diets" and lists on the internet of common triggers but patients need to remember that like Mito, each Mast patient is unique in what is a trigger for them.

Pain, chemicals, temperature change,viruses, stress,fatigue humidity, exercise, fragrance, pets, etc- Where one patient might have the most issue with food, the next might trigger from exercise, or fatigue or medications etc.

While I am certain Abby's "project elimination" was the right choice for Abby, she also has a life time history of food allergies and reactions. Eliminating foods should not be done unless you are certain the food is a trigger or under the care of your Dr. Mito patients tend to have more nutritional complications as far as maintaining the necessary levels so a food elimination diet should not be taken lightly.

For most patients with Mast Cell Activation Syndrome there are treatments. H1,H2, and other medications that have been found effective in calming those mast cell's down.

On facebook there are tons of Mast cell disorder support groups and I recommend you join them.

The worst part of Mast Cell Activation Syndrome is finding a Specialist that actually is aware of how to test, treat or even aware of how different it is from Mastocytosis is slim pickings. Many Specialists are only familiar with Mastocytosis and elevated Tryptase. With Mast Cell Activation Syndrome the Tryptase will almost always be normal. Believe it or not, there are fewer Specialists that are specialized enough to recognize, diagnosis and treat MCAS then there are for Mito!

food and medication intolerances
brain fog
bladder issues
GI issues(the same gamut as mito patients)

And so much more are seen in both populations. Below is a link to a great article written by Dr. Afrin(lead specialist on Mast Cell Activation Syndrome) that covers the recommended diagnostics, symptoms.

"A concise, practical guide to diagnostic assessment for mast
cell activation disease
Lawrence B Afrin, Gerhard J Molderings

If a Mito patient also has a mast cell activation syndrome it is possible with the appropriate treatment for their mast cells they might be like Abby and enjoy some stability with the appropriate treatments. Improving quality of life is key within both populations of patients.

We all have been told that Mitochondrial disease can cause all sorts of secondary issues, well with Mast Cell Activation Syndrome the same thing.

I am hopeful this year will bring more research that will help explain the connection.

For now though, we will keep those triggers away from Abby.

Monday, December 8, 2014

Gluten Free Rosette's (dairy free, corn free, soy free, nut free )

These were easy to make them gluten free. Honestly, I think the gf flour made a far more delicate and crisp cookie- every once in awhile gluten free just works better. On the bottom of the post I included a picture of one without the powdered sugar, you can see the wonderful delicate bubbling and some were nearly translucent.

I found mine kept slipping off the mold in the oil and I had to fish them out with a fork. So they are a little bent but fine otherwise. Not sure if my temperature was off a bit or the fact that it was a brand new rosette mold or the gluten free flour? Did not bother us one bit.

If you have other safe flavor extracts you could flavor them to your liking. Or if you have safe colors you can color them. Honestly though just the white powdered sugar always reminds me of snowflakes and makes my life a little less complicated.

Fried cookies, well who can resist? :-)

Gluten-Free Rosette Cookies:

1 cup all purpose gluten free flour
1 cup coconut milk or rice milk(I make my coconut milk from tropical tradition flakes usually)
1/2 teaspoon salt(I use pink himalayan, but use your safe salt)
3 teaspoons sugar
1 egg
1/2 teaspoon vanilla extract(potato vodka and vanilla beans)

Oil or Shortening to fry them in. (I used grapeseed oil and it worked, you could use Tropical Traditions coconut oil or Palm shortening)

(corn-free powder sugar to sprinkle on top, I used a sifter for a fine sprinkle, my homemade tends to clump)

Mix all together until very smooth(I threw mine in a blender)

Pour into a bowl(I picked one that was flat bottomed)

Follow the directions that come with your rosette maker(here on Amazon)

Compared to wheat these were more delicate and tended to come off the mold in the oil(might have been my oil or temp too!) so have a fork on hand to fish them out and place on a towel to drain.

I wait until they are drained and cool before sifting sugar on them.

Tuesday, December 2, 2014

GingerBread Men- (gluten free, dairy free, corn free, soy free, )

I have admitted before that I am the WORST at decorating! Now that I am very limited in what I can decorate with, you would think I would work a little harder, but between my tremors and my lack of interest, decorating just isn't my thing! I have no shame, but they sure taste amazing! :-)

We love this recipe for gingerbread men. It rolls well, bakes well and holds up well. I usually make a huge batch and keep them sealed airtight without decorations and only decorate as needed. These will bake well enough to use as a tree decoration(rather eat them!)

1/2 cup palm shortening(Tropical Traditions)
1/2 cup sugar(Domino's or C&H Organic cane sugar)
1/2 cup organic blackstrap molasses(plantation brand)
1 egg*
3 cups gluten free all purpose flour
1 teaspoon guar gum
1 1/2 teaspoons baking soda
2 teaspoons ground ginger( I dehydrate and grind our own now. )
1/4 teaspoon ground cloves( Simple Organic, Penzey's or grind your own from whole cloves)
1/2 teaspoon salt(I use pink himalayan)

1. In a large bowl, beat shortening and sugar until fluffy and light. Add molasses and egg and beat until thoroughly combined.

2. In a separate bowl, whisk together gluten free flour,guar gum, baking soda, ginger, cloves, and salt.

3. Add dry ingredients to shortening mixture to form a dough.

4. Cover and chill in the refrigerator for around 1 hour.

5. Preheat oven to 350°F. Line a cookie sheet with parchment paper.

6. Roll out each half of dough between 2 pieces of parchment paper(flour the parchment and flip the dough to lightly cover both sides with flour as it often sticks) into 1/2-inch thickness.

7. Place cookies in preheated oven and bake 7 to 10(depending on thickness) minutes or until edges are firm. Cool on cookie sheet before removing.

Friday, November 28, 2014


Quote by Thomas Jefferson

"If people let the government decide what foods they eat and what medicines they take, their bodies will soon be in as sorry a state as are the souls who live under tyranny." -- Thomas Jefferson

Monday, November 24, 2014

Toasted Marshmallow Cranberry Custard Pie(gluten free, dairy free, corn free, nut and seed free, soy free)

I could not help myself.. I know it needed to chill but after 3 hours of staring at in the fridge, I HAD to cut a slice.. holy moly! Think a mix of lemon custard and sweet tarts.. it is VERY sweet, and tart.. with the crispy crust.. oh sigh. I might be ruined for ever appreciating lemon meringue again. I have an amazing sweet tooth, and even I could not eat more then a slice of this amazing pie. If it isn't all eaten before it sets up, I will have to try to get another picture! Even not quite set, well, it was worth digging in before it was ready. The toasted marshmallow, just pushed it over the top.

Abby is reactive to cranberry this year, but I cannot quite pass on it when it comes to the holidays. I do my best to keep it corn-free. Many who are corn allergic or corn reactive find they simply cannot tolerate even organic cranberries so "caution!" eat at your own risk. For many with Mast Activation they may not be able to eat cranberries either. This is quite the show stopper though so maybe a great option for a potluck or for your guests.

The other day I ran across a cranberry meringue pie recipe and thought it was beautiful! Then again on the food network I saw one. So, of course I "had" to make it. Though I don't mind meringue, it just isn't my favorite. However, toasted marshmallow? Who doesn't like that! Plus, since I don't make sweet potato casserole(with marshmallows!)this seemed like a fun way to work that marshmallow into our feast.

The recipe seems rather overwhelming, but it really wasn't too bad. I just worked my way through the crust,filling and marshmallow topping. I have found adding an egg and a little less water to a gf pie crust gives me a more tender pie crust. Without the egg I often end up with a very hard crust that though looked pretty, about broke my teeth! So this crust won't be as "flaky" as wheat, but it is as close as I have found yet.

Pie Crust:

1 1/2 cups all-purpose gluten free flour
1/4 teaspoon pink himalayan salt(or whatever is safe for you)
1 teaspoon granulated sugar(domino's organic or organic C&H)
8 tablespoons cold palm shortening, cut into small pieces(Tropical Traditions or Spectrum)
1 egg
3-4 tablespoons ice water
(parchment paper)

Preheat Oven to 350.

1) Mix flour, salt, sugar in a bowl. Cut in palm shortening. Mix in egg and just enough cold water to make a sticky dough(softer then wheat based)

2) Lay down a piece of parchment paper. Sprinkle generously with gluten free flour. Place dough on it. Flip and turn until dough is well floured. Sprinkle more flour across the parchment and go ahead and sprinkle a bit more on the dough itself. Place second piece of parchment over the top and roll to desired thickness.(too thin makes it tough to handle.)

3) Carefully peel top layer of parchment off going slowly to avoid ripping dough.

4) With dough still on bottom parchment flip the parchment over the pie pan so dough is facing the pie pan I gently rest it on the pie pan but don't press it in. Carefully peel parchment. Try not to rip, but don't panic if you do.

5) Gently press dough into pie pan and crimp edges. Using a dinner fork pierce bottom crust all over to prevent air bubbles when baking. Use any excess dough to patch any tears pressing in well.

6) Chill crust for about 30 minutes(15 in freezer)this helps it keep it's shape while baking.

7) Bake for about 20 minutes at 350 degrees until lightly golden.

Cranberry Custard Filling:

1 12-ounce bag organic cranberries, fresh or frozen, thawed(organic cranberry works for some, but many will react. We also soak in a baking soda water bath and rinse and dry. )
3/4 cup water
Juice of 1 organic lemon(caution corn allergic, many lemons are waxed with corny wax!)
3/4 cup organic granulated sugar(Organic Domino's or Organic C&H)
1 large egg
3 large eggs, separated(save the egg whites for the marshmallow topping)

1) Combine cranberries, lemon juice and water in a medium saucepan. Bring to a boil over high heat and cook, stirring occasionally, until all the cranberries are beginning to break down, 5 to 6 minutes.(don't cook any longer then needed,over cooking causes the pectin to break down)

2)Pour through a sieve into a medium bowl, pressing and stirring well to push through all the juice/puree. (scrap bottom of sieve for the good stuff). Once it is just skins and bits left you are done.

3) Whisk into cranberry juice/puree the 3/4 cup sugar,whole egg and 3 egg yolks into the juice until combined.

4) Return the cranberry mixture to the saucepan and cook over medium heat. Whisking until it thickens and just starts to bubble as you are stirring, 4 to 5 minutes. Pour the filling into the baked crust. Set aside while you prepare the marshmallow topping.

Marshmallow Topping:

3/4 cup granulated sugar(Organic Domino's or Organic C&H)
1/2 cup Lyle's golden syrup(or homemade cane syrup)
1/4 cup water
1/8 teaspoon pink himalayan salt(or your corn-free salt)
3 large egg whites, at room temperature
1/4 teaspoon cream of tartar

1) Stir together the sugar, Lyle's golden syrup, water, and salt in a small saucepan over high heat. Bring to a boil, stirring occasionally, until the mixture reaches 240°F on a candy/fat thermometer.(this takes just a few minutes so keep an eye on it.)

2)While sugar mix comes to temperature,put egg whites and cream of tartar in the bowl and whip the egg whites to soft peaks on medium speed.

3)When the syrup reaches 240°F, slowly drizzle syrup into the egg whites(slow while you vigorously whip, too much too fast you will deflate the egg whites and not get fluffy marshmallow.)Increase the speed to medium high and whip until the marshmallow crème is firm and glossy.(This takes a few minutes, so be patient).

4)I filled a large piping bag and topped the cranberry(you could spoon on and make peaks with the spoon).

5) I placed under broiler for about 5 minutes- Watch carefully! Once marshmallow starts to brown it goes fast!

Chill completely.(or like me dive in early and take less then tidy slices!!!) Enjoy!

Sasha Cake(gluten free, dairy free...)

This started out to be a post on a quick cake. However, right after I finished the cake and took a few pictures I had left the kitchen for a few minutes to swap over the wash to the dryer. When I came back in ,it was missing the frosting on a corner of the cake. It took me a second to understand what had happened. Our little black poodle Sasha climbed the back of the couch and onto the counter where she helped herself. I knew it was Sasha and not Evie because Sasha had some pink evidence left on her snout! :-) Shocking because though my dogs are spoiled and lack manners, they both know better then to do that! Lesson learned and maybe time to rearrange the furniture.

This cake is great as a gluten free cake mix. Mix the dry ingredients and place in a jar. Make a label with the wet ingredients listed and cooking directions. Presto! A cake mix in the pantry. Any icing or fruit would be great. The crumb is not light but not heavy.. So a great recipe to use for cakes to coffee cakes.

Since pomegranate is in season right now I brought home some for Abby to give a try. She did great with them last year, so hoping she can tolerate them again. She is still in "lose foods" mode so scrambling to make sure her nutritional needs are met.

1 1/2 cups white rice flour(been grinding our own lately.)
2/3 cup potato starch
1/3 cup tapioca starch
1/2 teaspoon pink himalayan salt
1 tablespoon baking powder(1 part baking soda,1 part tapioca starch and 2 parts cream of tartar)
1 teaspoon guar gum(been using NOW brand)
4 eggs
2 cups white sugar(Organic Domino's or C&H)
1 cup coconut milk(I did a 50/50 of coconut milk and homemade coconut yogurt any milk would work)
1 cup grapeseed oil(Tj's)
1 teaspoon vanilla extract(homemade with potato vodka)

Preheat oven to 350 degrees.

Grease and flour a 9x13 pan(or 2 8 inch round pans).

Stir together the dry ingredients. In another bowl, beat the eggs and the sugar together until creamy add the rest of the ingredients. Add the dry ingredients and mix together.

Pour the batter into the greased cake pan.

Bake in the center of the oven for 35-40 minutes, until the cake is very lightly browned and a toothpick inserted in the center comes out clean. Cool completely before frosting.

Pom Frosting-

I use a favorite frosting recipe(palm shortening, cornfree powdered sugar, vanilla extract) and cooked down some pomegranate seeds and used the red juice as a liquid instead of the coconut milk I usually use in the frosting. I saved back a few pom seeds for a topping.

Saturday, November 22, 2014

Microwave Chickpea Brittle

This is the quickest and easiest candy you can make. It only takes an hour to cool enough to crack into pieces.

You can use chickpeas, or any seed or nut.. pumpkin seeds, sunflower seeds, whatever it is you tolerate.

With the holidays approaching at lightening speeds Abby and I were flipping through her recipes trying to figure out which ones she tolerated still, which one's could be tweaked and we realized her latest round of losing foods has put a dent into our stash of recipes. Now candy on the other hand I think we might have some wiggle room. Microwave brittle is the easiest thing and a no fail kind of candy. We have a few more recipes we might try this year as well.


1 cup white sugar(Domino's organic cane sugar)
1/2 cup Lyles Golden syrup(haven't tried my homemade syrup on this yet)
1 cup salted roasted chickpeas
1 teaspoon palm shortening(Tropical Traditions or Spectrum)
1 teaspoon vanilla extract(homemade with potato vodka)
1 teaspoon baking soda


Generously grease a cookie sheet.

Combine sugar and Lyle's golden syrup in a 2 quart glass bowl and microwave on high 4 minutes.

Stir in roasted chickpea's and microwave on high 3 1/2 minutes.

Then stir in palm shortening and vanilla and microwave for 1 1/2 minutes.

Stir in baking soda until light and foamy.

Pour onto cookie sheet and spread thin. (or not, I like thick pieces myself.)

Cool completely.

Break into pieces and store in airtight container.

Thursday, November 20, 2014

Abby's Twice Baked Potatoes

For as long as I can remember twice baked potatoes were always part of a holiday meal. When I met Derek he quickly agreed that they should be part of our holiday table as well.

In order to make them safely for Abby we have "tweaked" things a bit, but they are still just as delicious. We tried them with just the coconut yogurt(mashed potato!) and then lacked that richness of the regular twice baked. Adding the egg helped create a new texture with that richness the original recipe offered.

Abby's Twice Baked Potatoes

5 organic potatoes, baked .
3 Heaping Tablespoons fullfat coconut yogurt(maybe more or less depending on how you make yours)
1 teaspoon coconut oil
1 beaten egg
Pink Himalayan salt
paprika(simply organic, or penzey's)

1) Make sure your potatoes are baked completely. While still hot(I wear oven mitts!) I cut in half and carefully spoon out the potato putting the insides into a bowl.

2) add beaten egg, teaspoon of coconut oil, salt to taste, and 2 Tablespoons of coconut yogurt and whip until smooth. You want this a touch thicker then regular mashed potatoes. If you make them too thin they will kind of rise and then go flat after baking the second time. They still taste great but the presentation isn't as pretty.

3) I pipe(or spoon) the potato mix back into 8 of the 10 potato skins. I like mine really full and have found that sometimes my potato filling won't fill all 10 the way I would like, so I simply bake an extra potato for the extra filling. I then sprinkle a little paprika across the top.

4)Bake at 375 for 15-20 minutes or until slightly puffy and lightly golden brown.(They will dry out if you overbake)

I usually make these 1 or 2 days before Thanksgiving. After I fill the potato skins and sprinkle with paprika I cover and keep in the fridge. Then about 2 hours before dinner I place them on the counter to get them to room temperature and then bake.

Tuesday, November 11, 2014

Project Elimination was a SUCCESS

It has been a long 3 year since I started wondering if those french fries Abby was eating on the way home from the zillion Dr. appointments in the medcenter were part of the problem.

I talked to a lot people about diet, nutrition, chemicals.. toxins and will always be grateful to those who took the time and continue to take the time to teach me how to take care of Abby. Without them? We would not be where we are at today.

We took the leap of faith and began the long journey of Project Elimination. No Dr. thought food or medicines or chemicals or vaccines could possibly cause Abby's health issues. Yet, I talked to many patients who had seen remarkable improvements in their health by eliminating the junk.

It hasn't been easy. It is very hard work to grind your own grain. To learn how to make tofu out of chickpeas. To learn why we need magnesium and which foods were best. To learn how much protein Abby needed.. Our weekends have been devoured by traveling the greater Houston area hunting for safe foods and equipment to make it.

Our grocery budget certainly changed. I developed a love/hate relationship with Amazon. I learned about herbs and spices I have never heard of.. I memorized a 3 page list of corn derived ingredients to avoid.. I learned to be cautious about even organics when feeding Abby.

I learned that often medicines create as many symptoms as they treat.

I learned that supplements and vitamins are often synthetic not natural and enriched foods made Abby very sick.

It has been lonely. I stay at home all week- like no errands,no haircuts, to quick trip to the mini mart, no grocery shopping so that Abby has someone with her. We don't go to social events.. we have watched friends come into town and avoided them to avoid any germs. We have skipped fairs, shopping, holidays. Heck, we did not even hand out candy at Halloween, we left a bucket on the porch. I have missed adults. I have missed going to a concert or to even dinner. We surgical scrub(well not quite that extreme,but close!) when we come home from our errands on the weekends. When I read of our friends children off to college or on a date, I admit it, I have been envious.. I have struggled to keep hope on and off on this journey. She has bad days, heck, she has bad months. She has continued to lose foods. Sometimes she is just sick.. too sick to brush her teeth, too sick too brush her hair.. those days are hard to not run to the nearest Dr. and beg for every medical intervention.. my heart has broken again and again watching her suffer trying to even eat. It has been twice as hard for her as for me.

IT was ALL worth it.

I have gotten the chance to truly know my family. After the past 3 years I love them more then ever, and I am friends, good friends, no, great friends with my daughters and husband. I have learned how to really feed my family. I have learned that Drs. don't have all the answers and we should not expect them to- common sense is as important as good medical care. I have hope and I believe in Project Elimination more then ever today.

Abby's kidneys look great. Over the past couple years they have improved.. steadily. That doesn't mean there is no problem but is sure means that the scary stuff is ruled out. Patients with her kidney biopsy findings don't get better. But, Abby's kidney's have.. they look good.

The Nephrologist tells us, "Whatever you are doing, keep doing it."

That is exactly what we will do. It will be a much easier to continue our path knowing - IT WORKS.

It hasn't cured her. She is still struggling, but the fact that her kidneys are happy again? It makes every bit of this journey worth it.

I am so proud of my family, and thank you to each of you that has helped Abby get to this point.

Who knows, maybe in a couple more years she will be washing her own hair again? Or able to get dressed without taking 20 breaks.. or feel well enough to have a friend come over... sky is the limit.

It is but one battle and I know we have a very long road to win the war, but the proof is in the pudding. Her kidneys are better because of the efforts we have made to keep her away from germs, from not giving her meds that cause side effects, from letting her get all the rest she wants whenever she wants it, from the rest of us helping her get through the day, from the elimination of GMO's, Chemicals, and poor quality food.

I don't know what will come next. Her kidneys might show stress again, she could get worse.. but she might just get a little better. I have been following a few Mito Patients(with definitive biopsies and/or genetic findings) who are also doing better. Abby might get to be one of those.. maybe with our continued path on project elimination she will continue to be the odd man out and stay stable. We have hope.

Project Elimination is a success. 1 battle down and now on to win the war.

Friday, November 7, 2014

Yeast and Gluten free Hamburger Buns.

Abby has never been a huge fan of hamburgers though she never disliked them, but since going yeast free she suddenly realizes how much she misses them. I had started some sprouts(her only "raw" veggie)and had made a batch of bean burgers plus had some red pepper ketchup so decided to see if using the classic Irish Soda Bread in my muffin rings would work. It did! The bread wasn't bad at all and held together wonderfully.

2 cups gluten-free flour blend
1 teaspoon baking soda
2 teaspoons baking powder(homemade or Hains for corn free)
1 teaspoon guar gum(still using NOW brand )
1 teaspoon sugar(C&H organic cane sugar)
1/2 teaspoon psyllium husk powder(not neccessary, but I think it gives it a bit more spring to the bread)
1/2 teaspoon salt
1 egg
1 cup full fat coconut milk (you can use other milks but remember there is little fat in this recipe)

1. Preheat oven to 375 degrees. Lightly grease and flour a cookie sheet and english muffin rings.

2. Mix flour, baking soda, baking powder, guar gum,sugar, psyllium husk power salt in a bowl.

3. Add egg and milk and mix to form a soft, sticky dough.(add a tablespoon of water if it seems too thick, gf does best with a wetter dough)

4.Fill each ring about 1/2 full. Wet hands with water and smooth the tops so the dough fits well in the ring and top is smooth. Use a knife and cut an x in each top. If wanted sprinkle a dusting of flour on top(or sesame seeds if you can have them) Allow to sit on counter for about 10 minutes(the baking powder will lift some and then further in the oven)

5. Bake in preheated oven until top is golden brown, about 20-25 minutes.

Roasted Chickpea "pie" Cake: gluten free, corn free, soy free, nut free, dairy free.

After I posted yesterday using the cake picture but not the recipe quite a few asked for the cake recipe, so wanted to make sure to get it posted. I wanted to make a chickpea "pie" cake. Basically the filling of pecan pie in between the cake layers. I used a cake recipe I had used before, made the filling and then a caramel glaze. Any cake recipe would work fine for this, nothing special about the cake, just a simple yellow cake, so if you have a go-to recipe already use it. The filling is "new" and out of everything probably the one area you may run into issues. It was almost a custard like texture after I got it done. If it is too thick add a bit more coconut milk before it cools. If it seems thin, odds are when it cools it will be thick enough to use between the layers.


1/2 cup firmly packed dark brown sugar
3/4 cup Lyle's Golden Syrup(or homemade)
1/4 cup potato starch
4 egg yolks
1 1/2 cups full fat coconut milk(or mix 1/2 cup coconut yogurt with 1 cup water)
1/8 tsp salt
3 TBSP palm shortening
1 teaspoon vanilla extract (homemade)

Whisk together the first 6 ingredients in a saucepan until smooth. Bring to a boil over medium heat,stir the whole time start to finish, and boil for 1 minute, or until thickened. Remove from heat; whisk in palm shortening and vanilla. Place a sheet of parchment paper directly on surface of mixture to prevent a film from forming, and cool until room temperature before using on cake.

Cake: (you could use any favorite yellow cake recipe)

3/4 cup coconut oil, room temperature(Tropical Traditions)
2½ cups all purpose gluten free Flour
2 teaspoons baking powder(homemade)
1/2 teaspoon baking soda
1 teaspoon psyllium husk powder(or guar gum)
1/2 teaspoon pink himalayan salt
3/4 cup water or milk
1/2 cup granulated sugar(C&H organic sugar)
2 large eggs
1 teaspoon homemade vanilla extract
3/4 cup homemade plain coconut yogurt
1 1/2 cup roasted chickpeas
Preheat oven 350

First, grease and flour your pans. (I used 2 but you could go for 3 layers). Split your roasted chickpeas between the 2 pans. Cover the bottom of the pan with roasted chickpeas.

You know the drill, mix wet ingredients then add the dry in.. This batter is thicker then many and you will likely need to spread it vs pour into the prepared cake pans. Bake for 20-25 minutes or until a toothpick or knife comes out clean. Allow to cool for about 5 minutes and then turn out on to finish cooling before filling between the layers and icing.

Caramel Icing:

Caramel Frosting:
1/2 cup organic sugar
3 tablespoons Lyle golden syrup(or homemade)
2 tablespoons full fat coconut milk(I used just the cream that was on top)
1/4 cup palm shortening
1/4 teaspoon salt
1 teaspoon vanilla
2 1/2 cups powdered sugar(corn free/homemade)
3 tablespoons rice milk

Combine the sugar and Lyle syrup in a saucepan on the stove. Cook over medium high heat until caramel colored(doesn't take long I pulled mine the second I smelled it changing and the color had just changed a tiny bit). Add the coconut cream and 1/4 cup of palm shortening. Add the salt and vanilla. Cool to room temperature.

With A mixer, mix the caramel and add 1 cup of powdered sugar and milk and beat well. Add more milk or powdered sugar until desired consistency is reached. The goal is a thick glaze and not a frosting. Pour the whole thing dead center on top of cake.. you can gently push toward the edges to get it drizzle down the sides.

Thursday, November 6, 2014

Eating Everything, without Anything.

I have always loved to cook and bake. When faced with the enormous task of eliminating corn,chemicals,soy, dairy, gluten, colors, high histamine and the literally zillion other foods I was accustomed to cooking with I felt panic.

I have learned a lot the past few years. When Abby was a baby and we had to avoid so much it was much easier. Produce wasn't covered with chemicals and raised in chemicals. Anything prepared or enriched was more novel then the mainstay it has become today.

We literally had to change everything. The food I offered Abby in the beginning was sad, pathetic and boring for a long time. Thank goodness that despite being the picky one in our family she had the good sense to understand she had to eat and she had to eat for her body not her taste buds.

1) Pace yourself. Find 5 safe basics at a time and toss 5 that aren't safe at the same time. When it dawns on you that pretty much everything in your local market is full of foods you must avoid? You will be overwhelmed. Breath. You will hunt down other sources. Human Instinct is pretty strong when it comes to food, put it to good use and go find safe food.

2) Join a food allergy/Mast support group. Their hard earned experiences they so willingly share with you are priceless!

3) Face the fact that it might be(likely) more expensive for awhile. At this point our prices have adjusted as I found crafty ways to not waste anything and my willingness to make as much as I can saves us money now. It will all balance out. And if not? Eating clean,safe and healthy for your body foods is WAY WAY cheaper then Drs, hospitals and medications and still feeling awful.

4) Don't give up.

5) Learn to cook. Many young adults honestly think cooking is opening a box and adding water- it isn't. Watch youtube, take a class at the community college, volunteer to help a friend who knows how to cook, your life literally depends on at least learning the basics.

6) No complaining. The web has endless(I really mean endless) blogs, websites, guru's with tons of relevant information on how to cook minus your allergens. If your food is boring? Start reading. Ask other folks with allergies for their favorite snacks and recipes. Even with removing many, many items and most being past staples for my cooking I have found endless ways to combine Abby's foods to keep it fun. It is more work, but you or your child are WORTH a few more dishes to wash or skipping out yet another boring mall shopping trip this week to put your food and health first. Before long it will seem natural and you will forget the old lazier ways.

7) Don't expect it to taste the same as your old food because it won't. Learn to embrace new food experiences, decide to appreciate the opportunity to have new food experiences because being miserable is not an option.

8) Teach your children(even if they have no allergies) about food. Where it comes from, why fresh is better, why organic is better, why we don't want to eat premade foods.. If they grow up and either develop food issues or have children with them? They will thank you. As a culture America tends to now eat based on fads and trends. That is fine as long as the basic nutritional needs are met and we can stay healthy. One of the most shocking things I have learned is how very little I knew about food and nutrition. Teach them the difference between "fad diets" and good old fashioned nutritional common sense.

9)Learn to take your own, and if possible enough to share. I have noticed some folks feel alienated from their friends over food. You can either sit at home alone or figure it out. Much of our social lives are centered around food, it is important to the social rituals. Make your favorite safe dish and take enough to share. I have heard families complain that their "food" is too expensive to share(sometimes with their own family!!!!) and it makes me want to flip. If you have ever hosted a dinner party even using cheap not safe ingredients, it is EXPENSIVE!!! So have good manners and share. You might be surprised that your "funky" food will be well received.

10) Learn to substitute. This is a little tricky and comes down to experience. For example, if an ice cream recipe calls for heavy cream and whole milk and you try to sub with rice milk, well you are not going to be happy with the end result. Rice milk doesn't have the fat to be a good sub at least when making ice cream. Try a full fat coconut milk.. Cannot have coconut milk? Remember rule number 7. Either embrace the new texture or move on.

11)"Healthy" "Organic" "local" "sustainable" doesn't mean it is either SAFE or Nutritionally beneficial. My biggest wake up call was stopping at various Health markets or the "organic sections" and reading the ingredients! WOW, holy moly some of those ingredients are far worse then eating twinkies!!! Read the labels. If needed, contact the manufacturer. Most companies don't want you to get sick from their products and are willing to try to be honest. If the company refuses to answer your questions? Don't buy their food, EVER.

12) It will and does get easier. One day you will wake up and realize that you enjoyed all the food you had today and none of it made you sick. After that day, it just gets easier.

Tuesday, November 4, 2014

"Soaked" Buckwheat Hot Cereal(corn-free, soy free, dairy free, gluten free)

I realized I just haven't posted a whole lot lately. Abby is still losing foods instead of gaining so my need to be creative is on hold for the most part.

Since Abby's Project Elimination all of us in our house have become more aware of just how badly our food here in America is tainted with chemicals that are often neurotoxic or that contribute to autoimmune disorders, and just simply that prepared foods aren't as nutritious. So, I have continued to make foods that are free of corn,soy,gluten and chemicals for the rest of us and figured I really ought to stay in the habit of sharing.

For anyone who has had to go corn free you know how hard it is to avoid corn contamination. I have found the safest way to avoid corn contaminates for Abby is grind our flour. We do have flours we buy but when I can we grind our own. Plus, with higher protein flours they can go rancid and lose their flavor and nutrition over time. Storing the grains instead of buying the flour allows them a longer shelf life and better end result. It also means I have grain on hand for meals like this.

Abby is a big hot cereal fan, always has been since she was tiny. Over the last couple years she has discovered buckwheat and nothing makes her happier then about anything made from it.

For Hot Cereal we find a 50/50 blend sits best with her stomach and her taste buds. Right now we like 50 percent buckwheat groats and 50 percent rice.

I do have a grain mill and often use the "coarse" grind option to grind and then cook, but I also do like to soak. Obviously it is easier then hauling out the grain mill but soaking also provides a more easy to digest food. When I grind buckwheat for hot cereal I toast it first then grind. When I opt to soak instead I can skip that step which makes soaking that much more appealing.

Another option I use for the rest of us, though not Abby(fermented foods are a big no-no for those who are histamine sensitive) is "souring". I will let the grains soak for a few days giving them a stir when I walk by a time or two a day. This also breaks down the grain but we do it because we like the flavor from fermenting. So, if you soak your grains and forget about them? Don't worry, just stir and let the good flavor grow. I have let the grains soak up to a week.

We have used teff, millet etc instead of buckwheat in the past, but right now we are all about the buckwheat groats.

1/2 cup buckwheat groats
1/2 cup rice
pink himalayan salt
coconut oil.

I combine the buckwheat and rice and cover generously with water.

Drain, rinse in the morning. Add equal amounts of water and throw the grain with water in the blender. No matter how much you blend there will usually be a bit more coarse bits then commercial blends or with the grain mill but we like that it turns out hearty and offers a nice texture.

Pour into saucepan and add more water or milk of your choice also add a teaspoon or two of coconut oil(not needed but I try to sneak some in when I can) and a few good shakes of salt. I apologize but I don't measure. I usually add at least as much water as grain in the pan and keep the water close by to add more as it thickens. I cook it slow and stir frequently- it will burn on the bottom if you ignore it. Once it has cooked for about 15 minutes I add a bit more water and cover and take off the heat. I let is sit for another 5-10 until the grains are nice and tender. Some like their's thinner in our family so I stir in more coconut milk while other's like it thicker and I serve it as is.

I don't stir in anything while it cooks since we all have very different preferences. In this picture I had added honey, a spoonful of homemade coconut yogurt and raspberries. Another favorite mix is the yogurt,and toasted coconut flakes. Sauteed apples or pears, brown sugar, spice.. even a few spoonfuls of sweet potato(no pumpkin puree for Abby but sweet potato is our go to sub for pumpkin) and pumpkin pie spices... sky is the limit.

Don't throw the leftovers! I spoon into a greased pan,cover and place in the fridge. It set's up thick enough to slice. I will dip it and fry it(think french toast but a heavy stick to your ribs version) and serve it in slices later in the week. Or I will use some in a meatloaf or mix some into bean burgers. It is a great filler.

Tuesday, October 28, 2014

If I Could Do it Over...

I was digging through photo's the other day and thinking a lot about the various choices we made raising the girls and I could not help but feel a huge stab of guilt over a few choices I made. When "everyone" else including the Drs. are encouraging or reassuring that your decisions are good ones, you tend to ignore that "gut" feeling telling you to do your own research, telling you to wonder why that other smaller group of families is telling you to think twice before just going along with the masses.

1) Think. I have a brain that is perfectly capable of reading medical research. We all know that depending on the outcome wanted, research can be tweaked to support one side or the other. Looking back I wish I had trusted myself to believe what I read.

2)Trusting Drs.
I should have never. Abby had chronic ear infections even though she was breast fed. The Ped was often hostile to me and even said that if I was really breast feeding her then it was impossible for her to have all these ear infections(which she took multiple antibiotics for)I fought for months to get her to an Allergist because the Ped at the time said it was "impossible" for a baby under the age of 1 to have food allergies. (I have heard other Mom's even today say they have still been told the same mistruth). She wasn't normal, I had been around a ton of other babies and I KNEW something was terribly wrong. Again we questioned the Ped who blamed me for her delays. I was told I held her "too much", that she needed to "cry it out" in order to develop properly. My "gut" said that in Abby's case that particular advice was child abuse.. At that point my "gut" said don't trust the Drs. advice when it conflicts with your gut.(I did continue to hold Abby whenever she wanted and also refused to let my girls cry when crying clearly means they needed Mom or Dad) As she hit puberty I was told to "push her".. she was just being dramatic,needed to toughen up, she was just sensitive.. The worst advice was Public School was the best place for her to get stronger.. Hardly. Abby listened to them as well and when we pushed, she broke. She trusted their advice and felt she had failed when she got sicker, not that the advice was wrong in the first place. My "gut" said, keep her home, let her rest, and instead I trusted the Drs who were WRONG.

Not as safe as they tell you. My gut said - "don't do it", and I did not listen. I will regret that decision until the day I die.

4) Medications. Asthma, allergies, sensitives.. she was prescribed an extreme amount of medications. If one did not work or caused reactions instead of just cutting it, the Dr. would quickly replace it with another. She got sicker. Looking back? I would have trusted what I saw in Abby and not the Dr or water down side effects listed on the insert. I still remember the moment that I "knew" all the medicines were creating as many issues as they were treating.. As we were leaving the Drs. office one afternoon and the Dr. as he walked by said " oh and you might want to have her eye's checked in a couple months because it can cause glaucoma." I will never forget his nonchalant attitude.. That was one of many wake up calls.

5)Food. When you have a baby allergic to what seemed like everything you learn pretty quick about food. I did learn. 20 years ago it was a whole lot easier though to remove allergens. It was still easy enough to find single ingredient food that wasn't grow,sprayed,treated and cross contaminated with everything. The last few months I nursed her I ate a lot of rice and drank a lot of lemonade and though it wasn't easy the ear infections slowed and she was happier, cause and effect and I was glad to do it. That lesson alone should have been a blueprint forever to food in my home,but I ignored the evidence and trusted the Drs. As she got older all her Drs. said she had "outgrown" those allergies and to "let her eat whatever she wanted.". Her leaky bladder, trips to the bathroom, were just her, they had NOTHING to do with what she ate. When she got so sick again at puberty I removed a few of the old allergens without much result. When I asked the Specialists whether food could be contributing to her health crash I was told "absolutely not". I grew up with a food aware Mom and a food aware community. My friends ate carob and their parents bought food through co-op's. My Uncle drank soy milk.. farmers markets were a joy. My hubby on the other hand grew up in a family where a bag of chips and a big gulp were at least a weekly if not daily event. The girls friends ate pizza hut and McDonalds and went out to eat for dinner constantly. Ate white bread and shockingly orange mac and cheese. All the commercials on the TV, and the grocery stores were full of these things, everyone else ate the stuff so it had to be safe right? Not when your child is an orchid and not a cockroach. My "GUT" knew food was contributing to her health issues.

The big question is, if I had followed my gut the whole time, would she be healthy? No, probably not. She had issues in the womb. But, I ABSOLUTELY BELIEVE, if I had listened to my gut she would NOT be as sick as she is today. Maybe she would have been able to finish college. To go on a date. To have a boyfriend.. even to be well enough to go out and shop whenever she wanted.. Heck, maybe she would even be well enough to go for a Dr. checkup without ending up in bed for a week. If I could go back in time, I would have made very different decisions.

I share Abby's struggles on this blog partially for her and I. I have been humbled by so many truly caring folks who reach out constantly who have gone through the exact same thing. Or who have learned some terrific tips and tricks to help keep her body as healthy as possible. This blog is kind of our way of reaching out and trying to find others like Abby. I also share her journey as a WARNING. You have a choice. You can make your own decisions based on what you know is best for your child, or you can ignore your gut. I made horrid mistakes, if I cannot go back in time, I always hope someone who is faced with one of these decisions will read this and know they have a choice. They don't want to be in my position today, knowing that had I just listened to my gut, the outcomes for Abby could have been much better.

Never, 'for the sake of peace and quiet,' deny your own experience or convictions." -- Dag Hammarskjold, Swedish diplomat

Tuesday, October 21, 2014

MitoAction and Flu Shot's too? :-(

Today at 9:06 AM Christine Cox, Director of Outreach & Advocacy (MitoAction)

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If you are unable to view the message below, CLICK HERE to view this message on the website

Research Study Opportunity

National Human Genome Research Institute researcher Peter McGuire, M.D. is conducting a study on immune issues in mitochondrial disease and other inborn errors of metabolism. The Metabolism, Infection and Immunity ("MINI") study is ongoing and currently is seeking additional patients with mitochondrial disease to participate.
The NIH is offering seasonal flu vaccines as well as the pneumococcal vaccine to study participants. If a vaccine is received, the participant's response to the vaccine will be measured and shared with the participant or his/her family. Please note that receipt of vaccines is not required for participation in the MINI study.
MitoAction has received the following information about the MINI Study from the NIH:
Overview of the MINI study
Letter about the MINI study and mitochondrial disorders
Information about flu season for patients with mitochondrial disorders and inborn errors of metabolism
To be eligible, participants must:
Be at least 2 years of age
Have a diagnosis of a Mitochondrial Disorder
Be able to travel to the NIH Clinical Center in Bethesda, Maryland
For additional information about the MINI Study, please visit http://www.genome.gov/mini/

Granted, it is pointed out that you don't have to have the vaccine to participate....

Still, if you are like me, the last thing you want to hear again and again and again and again and again... is "Flu Shot".

Commercials, sitcom's, government announcements, schools, pharmacies, it is insane.

On the other hand, there are plenty out there that feel the potential protection for a few age populations makes injecting this shot worth the risks. So maybe these type of emails from patient support non-profits make them feel better about the choice they make to buy these.

On a positive, America is waking up and more and more folks are taking the time to read and assess whether the "possible' protection gains from these are worth the scary risks.

Vitamin D(way safer then flu shots), hand washing(safest!), good rest( great idea for all diseases)and improved nutrition (excellent choice) are the safest options in flu prevention and not only help protect you from the flu, but also help keep your body far happier and healthier.

Just saying.

Mito Vocab:


Via Wiki: Immunotoxicology (sometimes abbreviated as ITOX) is the study of immune dysfunction resulting from exposure of an organism to a xenobiotic. The immune dysfunction may take the form of immunosuppression or alternatively, allergy, autoimmunity or any number of inflammatory-based diseases or pathologies. Because the immune system plays a critical role in host resistance to disease as well as in normal homeostasis of an organism, identificantion of immunotoxic risk is significant in the protection of human, animal and wildlife health.

In the non-adult (embryo, fetus, neonate, juvenile, adolescent) this study is referred to as Developmental Immunotoxicology (commonly abbreviated as DIT). For most toxicants examined to date, the developing immune system exhibits a heightened sensitivity compared with that of an adult. For this reason, DIT screening has applications to human, animal and wildlife health protection.


The term xenobiotics, however, is very often used in the context of pollutants such as dioxins and polychlorinated biphenyls and their effect on the biota, because xenobiotics are understood as substances foreign to an entire biological system, i.e. artificial substances, which did not exist in nature before their ...
Xenobiotic - Wikipedia, the free encyclopedia


From Wikipedia, the free encyclopedia

Ototoxicity is the property of being toxic to the ear (oto-), specifically the cochlea or auditory nerve and sometimes the vestibular system; it is commonly medication-induced. Ototoxic drugs include antibiotics such as gentamicin, loop diuretics such as furosemide and platinum-based chemotherapy agents such as cisplatin. A number of nonsteroidal anti-inflammatory drugs (NSAIDS) have also been shown to be ototoxic. This can result in sensorineural hearing loss, dysequilibrium, or both. Either may be reversible and temporary, or irreversible and permanent.


Nephrotoxicity (from Greek: nephros, "kidney") is a poisonous effect of some substances, both toxic chemicals and medication, on the kidneys. There are various forms of toxicity.
Nephrotoxicity - Wikipedia, the free encyclopedia


via Wikipedia; Aminoglycoside is a medicinal and bacteriologic category of traditional Gram-negative antibacterial therapeutic agents that inhibit protein synthesis and contain as a portion of the molecule an amino-modified glycoside (sugar);[1][2] the term can also refer more generally to any organic molecule that contains aminosugar substructures. Aminoglycoside antibiotics display bactericidal activity against gram-negative aerobes and some anaerobic bacilli where resistance has not yet arisen, but generally not against Gram-positive and anaerobic Gram-negative bacteria.[3] They include the first-in-class aminoglycoside antibiotic streptomycin (images at right) derived from Streptomyces griseus, the earliest modern agent used against tuberculosis, and an example that lacks the common 2-deoxystreptamine moiety (image right, below) present in many other class members. Other examples include the deoxystreptamine-containing agents kanamycin, tobramycin, gentamicin, and neomycin (see below).


Mitochondrial Plasticity:

Mitochondrial biogenesis:

Genetic Toxicology:

From Wikipedia, the free encyclopedia

Single-strand and double-strand DNA damage potentially caused by genotoxins
In genetics, genotoxicity describes the property of chemical agents that damages the genetic information within a cell causing mutations, which may lead to cancer. While genotoxicity is often confused with mutagenicity, all mutagens are genotoxic, however, not all genotoxic substances are mutagenic. The alteration can have direct or indirect effects on the DNA: the induction of mutations, mistimed event activation, and direct DNA damage leading to mutations. The permanent, heritable changes can affect either somatic cells of the organism or germ cells to be passed on to future generations.[1] Cells prevent expression of the genotoxic mutation by either DNA repair or apoptosis; however, the damage may not always be fixed leading to mutagenesis.

To assay for genotoxic molecules, researchers assay for DNA damage in cells exposed to the toxic substrates. This DNA damage can be in the form of single- and double-strand breaks, loss of excision repair, cross-linking, alkali-labile sites, point mutations, and structural and numerical chromosomal aberrations.[2] The compromised integrity of the genetic material has been known to cause cancer. As a consequence, many sophisticated techniques including Ames Assay, in vitro and in vivo Toxicology Tests, and Comet Assay have been developed to assess the chemicals' potential to cause DNA damage that may lead to cancer.


(Via Merriam Weber)


: a branch of pharmacology concerned with the application of immunological techniques and theory to the study of the effects of drugs especially on the immune system
: the immunological effects and significance of a particular drug (as morphine)


From Wikipedia, the free encyclopedia
Toxicokinetics (often abbreviated as 'TK') is the description of what rate a chemical will enter the body and what happens to it once it is in the body.


From Wikipedia, the free encyclopedia
A mycotoxin (from Greek μύκης (mykes, mukos) "fungus" and τοξικόν (toxikon) "poison")[1][2] is a toxic secondary metabolite produced by organisms of the fungi kingdom, commonly known as molds.[3] The term 'mycotoxin' is usually reserved for the toxic chemical products produced by fungi that readily colonize crops.[4] One mold species may produce many different mycotoxins, and the same mycotoxin may be produced by several species.[5]



From Wikipedia, the free encyclopedia

Depiction of the human body and bacteria that predominate
A microbiome is "the ecological community of commensal, symbiotic, and pathogenic microorganisms that literally share our body space."[1][2] Joshua Lederberg coined the term, arguing the importance of microorganisms inhabiting the human body in health and disease. Many scientific articles distinguish "microbiome" and "microbiota" to describe either the collective genomes of the microorganisms that reside in an environmental niche or the microorganisms themselves, respectively.[3][4][5] However by the original definitions these terms are largely synonymous.

Saturday, October 18, 2014

Fermented Yuca(Cassava) pancakes(gluten free, dairy free, corn free, soy free, nut free)

No flour? No problem. No banana's? No problem. Fermented yuca pancakes are a new favorite. Sadly, Abby cannot partake of these because of the fermented part of the picture, but the rest of us LOVE yuca and were very glad we experimented with these. Abby nor I can have banana's and boy have I missed them. You know when a banana is right on the edge of being overripe? That extra sweetness and that touch of almost boozy flavor? That is fermented yuca. Just no banana flavor. This makes mashed fermented yuca excellent for all sorts of baked goods to increase tenderness, sweetness, and moisture.

The rice yeast balls can be found online or most International markets. There are both Chinese and varieties from the Philippines. I usually use the variety from the Philippines it is the "Rotary" brand. (This is what I buy locally Ragi Manis )

1 1/2 cup mashed fermented Yuca***
2 eggs
2 teaspoons melted coconut oil
1 teaspoon baking powder(homemade, 1 teaspoon baking soda, 1 teaspoon tapioca starch,2 teaspoons cream of tartar)
1 dash pink himalayan salt
1/2 teaspoon vanilla extract(homemade vanilla beans soaked for months in potato vodka)

(you can add a bit of sugar, but the fermented yuca is sweet by itself it just isn't needed)

Mash the fermented yuca smooth in the bowl(in the center of each root is there is often a "core" they will look like thick threads or strings, remove and toss those), blend in the rest of the ingredients until smooth.

On a medium low well greased skillet make your pancakes. Low and slow. Without flour these are delicate, so these will take an extra gentle hand to flip.

***Fermented Yuca

Peel and cook your yuca. Boil about 15-20 minutes till tender.

Cool to room temperature

Use "rice ball yeast". I smash the yeast ball(1 ball per about 4 medium roots)till it is powdered and rub all over the yuca. I covered it up snug and placed on top of the fridge(where it is warmer) for 3 days. You know it is done when it smells fruity,boozy and is mushy and sweet. Keeps well in the fridge for a couple weeks.
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