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.



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

Noodles



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

Crust:

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.



Filling:

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
water

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!

Fatigue
constipation/diarrhea
rashes,hives
food and medication intolerances
brain fog
bladder issues
GI issues(the same gamut as mito patients)
kidney

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.
 
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