WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, April 30, 2014

Corn-free Tamales

Done. Much easier then I thought it would be as well.

I have never made tamales before and to be honest not a huge fan. However, Derek and Abby always adored Christmas tamales years ago when she was able to eat corn many years ago. (we were told she had "outgrown" her allergies- HA! Not really)

Part of knowing you cannot have a certain food is craving it. All of us will always have moments of wanting what we cannot have.

To my surprise these turned out great. Derek, Sara and Abby said "Please, Make AGAIN!"

I am very satisfied knowing that a very traditionally corn based favorite food can be made corn free and taste just as good.

My "wrapping" needs work! But, despite their varying sizes and shapes they worked out well. About halfway through I had managed to find the "best" method. So if you make them cut yourself some slack, even if they don't look perfect, they will taste just fine.

I followed a few different websites that explained making tamales so really not a recipe but a list of my substitutions.

1) Instead of corn husks I used dried bamboo leaves I found at the Asian market.

These worked great! Just like a corn husk they need to be softened in boiling water. Where corn husks can take an hour, the bamboo leaves were pliable within 10 minutes. I will warn you though, they smell a lot like tea while they boil. I was worried they would flavor my tamales, but to my relief they did not.

2)When making the masa I used a 75 percent millet flour to 25 percent toasted chickpea flour. I should have held back about 1/4 of the millet and ground it coarsely to offer a more authentic texture but I forgot. They still turned out terrific. It is important to toast your besan flour before adding it. Chickpea flour can have a very beany and unpleasant flavor when raw, even cooked the flavor is just better when toasting before using. Very easy, pour it in a dry pan and on high stir it around till it starts to turn golden and you can smell it. I forgot to mention that instead of lard I used palm shortening. I thought about coconut oil, but most of the tamale recipes recommend "whipping" the lard to improve the texture of the masa, coconut oil won't whip, but palm shortening will.

3) I used a chicken filling because Abby cannot eat pork or beef and it worked great. I did not really follow a recipe but more added what I wanted. I boiled a whole chicken and shredded the chicken. I used the broth from the chicken for my Masa. I added sauteed garlic, onion to the shredded chicken. I roasted some poblano chilies and diced and added those to my chicken mix. I added some fresh toasted and ground cumin seed, a dash of cayenne, and salt and pepper. I made the filling first before proceeding to the masa and the rolling.

4) Tamales are steamed. I don't have a "tamale steamer" I suspect most don't. I threw a rack in the bottom of a tall pot and added water and set the tamales upright in the pot.(it is okay if the water touches the bottoms of your tamales) I steamed for about 80 minutes. With chickpea flour being used I really wanted to make sure they were cooked. You can pull one at 45 minutes to see if it is ready or not.

Not too hard at all! :-)

Monday, April 28, 2014

Not Predictable

One of the things I see that are common between both Mast and Mito- they are not predictable.

With Mito you can have a genetic mutation for Leighs, or you can findings of a depletion on biopsy and do remarkably well, or on the other hand the disease can rapidly progress. Same with Mast, some patients with have extreme symptoms that will suddenly go into "remission" or "settle down", while others have a constant set of symptoms.

That is what makes both so incredibly difficult. Even with the gold star laboratory proof of either disease, there really isn't a prognosis.

Some with no gene found or little laboratory evidence with Mito will face a terminal progression. While someone with a proven mutation might lead life with only a milder set of symptoms.

So if we cannot depend on laboratory findings with Mast or Mito, then we depend on what is found clinically to predict progression? Nope. That doesn't work well either. I have met more and more patients who like Abby have had years of really symptomatic health where everyone thought for sure the prognosis was bad. However, like Abby many suddenly stabilize for years at a time. Abby had years of being pretty normal, and that gives us hope that we will find something that will "reset" her bodies current path onto a better path. Patience.

The issue I think is that for the first few years of data gathering the only patients identified were the "severe" presentations. So all the medical guidelines were based on those with severe forms of Mito. With Mast(MCAS), it is just too early, they still don't really know enough yet. It does seem they are picking up on more of the milder presentations earlier in developing their guidelines which is great, it will help those with both milder and more severe disease processes down the line. With the exception of Abby's Mito Specialist every Dr. that see's Abby looks up what a Mito depletion is, and the books say she should be much sicker or dead. Then they question whether she has a Mito Depletion at all. Not Predictable. When it comes to Mast? She is "too" sick to have Mast(MCAS), or maybe not? Again, Not Predictable.

Time and time again every time Abby hits a hiccup and is struggling, in the back of my mind I wonder "is this it?" "Is this what progression looks like?" Then in her remarkable Abby way, her body bounces back and whatever symptoms I was worried about either aren't that big of deal, or simply fade away.

Spring has just been tough. Her "allergy bucket" is overflowing. Which just makes her more likely to show symptoms more frequently. Which leaves me worrying more then I should.

For us what makes this journey difficult is that it is NOT Predictable. What gives us so much hope is that it is NOT predictable.

There is nothing set in stone. There are no absolutes. In a few weeks when the Spring pollen count drops again, and Abby has an easier time of things it will reinforce what I already know. You have to see your glass as half full on this journey, because statistically, the odds are in your favor.

Thursday, April 24, 2014

Baby Bok Choy Bites

Baby Bok Choy Bites:
Usually I peel the outer leaves off the baby bok choy and either saute the center whole for a side, or chop to throw into soup. But, I always felt a little bad about not using the outer leaves. They reminded me of little cabbage leaves, which of course made me think of cabbage rolls- and the baby bok choy bite was born.

The filling is:
1 pd cooked ground chicken
4 cloves sauteed garlic
2 inches of sauteed ginger
red pepper flakes(to taste)
1 cup cooked brown rice(optional, any finally minced veggie is great)
an egg(to bind)
salt and pepper to taste

I sauteed it all together first because bok choy steams and cooks very quickly, so I knew the chicken would not have a chance to safely cook through. I threw the egg into the cooked filling to make sure the filling would bind together.

The bok choy leaves I simply cut the stem off and and used a toothpick(not safe for the very corn sensitive!)to secure them. I steamed them in the rice cooker basket for 10 minutes.

I made a quick dipping sauce of a bit of sugar,coconut amino's, red pepper flakes,coconut secrets vinegar. Of course it wasn't a really great snack until I added in some gluten free green onion pancakes.

Thursday, April 17, 2014

Indian Biscuits and Curry?

Biscuits and gravy, or "shit" on a shingle- we have eaten a lot of various gravies on biscuits and bread. Why not curry on a biscuit?

Not exactly sure what inspired this particular fusion of flavors, but I think it was the Urad flour I toasted and ground in the WonderMill. If you have had raw urad flour you know it has a strong and memorable flavor and no matter how I have tried to like it(great nutrition and easy to digest) I have had to really tone it down each time I used it. That is until I toasted it. Like Chickpea flour you can toast the urad to mellow the flavor and transform it to a far more familiar flavor. It has nice nutty tones to it and can be versatile in both savory and sweet once toasted. I toasted the urad before I ground it as it is much smaller then chickpea's so can get it well toasted before it is ground into flour. Grinding in the WonderMill using the pastry grind option, the toasted urad becomes an incredibly fine and fluffy flour and it's soft texture really can help with textures in gluten free baking.
I gotta be honest, most of my gluten free biscuit attempts have been miserable. That is until I started replacing some of the gf flours with the urad flour. They still aren't great to look at but the mouth feel is much improved. I associate certain flavors with Indian and middle eastern cooking and the urad flavor inspires me to use different seasoning. I figured why not season biscuits with cumin,black mustard,cardamon? We are so glad we did. The first bite was startling. I think we expect a biscuit to taste a certain way, but in no time at all we found ourselves scarfing down the entire batch!

The downfall is these still aren't pretty like wheat based biscuits. Which lead me to think if no one saw them, they would love them. I guess that is where the curry idea came in.. Drench them in a rich, spicy chicken curry and who cares what they look like?


To your favorite gf biscuit recipe add:
1 finely diced sauteed onion

Toast and grind 1 tsp cumin seed, 1/2 tsp mustard seed and the seeds from 2 black cardamon pods.

Add toasted and ground spices to the flour blend. After cutting your shortening into your biscuits right before cutting your biscuits out, mix in the sauteed onions.

Follow your recipe for baking.

In my favorite recipe I also add 1/3 cup of the urad flour and remove 1/3 of the gf all purpose flour.

(I use all purpose gf flour, palm shortening,baking powder, salt, and coconut milk in my biscuits)

Chicken Curry:

I used this recipe with a few substitutions: Kothiyavunu Blog.

I removed the coriander and cinnamon because of allergies

I removed the curry leave because I don't have any fresh.

I used coconut yogurt instead of thick coconut milk.

To make the gram marsala blend I used the recipe from this blog; Spicy Treats.

I removed the coriander and cinnamon due to allergies.
I removed the fenugreek seeds because we aren't quite sure we like them yet.
I removed the curry leaves because I don't have any.

I added fresh red pepper, had to have some color, plus flavor wise, the sweetness makes a nice contrast.
I added some fresh flat leaf parsley or chopped green onions.

Wednesday, April 16, 2014

The Filling that makes all Cookies Wonderful

I made some carob cookies that I have been tweaking the recipe and they turned out just a touch salty and a touch dry. I figured I could make some marshmallow creme to pipe for a filling, but then as I was tasting the cookie the little bit of saltiness reminded me a whole lot of an oreo.

So some "fake Oreo cookie filling" seemed like the perfect thing to fix my less then perfect cookies.

We have decided this "filling" is officially our goto filling for every iffy batch of cookies or for that matter every batch of cookies we make. :-)

Easy, fun and the kids can help.

"Fake Oreo Cookie Filling"

3 1/2 cup corn free powdered sugar(I make our's but if you have some store bought you trust is cornfree it works great too.)
1/2 Tablespoon granulated sugar(domino's)
1/2 teaspoon vanilla extract(homemade using potato vodka and vanilla beans)
1/2 cup palm shortening(Spectrum or Tropical Traditions)
2 Tablespoons HOT water

Place all the ingredients in a bowl and start mixing. I used a hand mixer and had a tough go of it, but it did blend. This stuff will be very thick. It will surprisingly roll into a ball with ease. If it is too sticky, add a bit more powdered sugar. If it is too crumbly add a touch more hot water.

You take about a tablespoon(or more depending on the size of the cookie)and roll it into a ball. flatten it slightly between your palms and place on your cookie. Top with another cookie and lightly press together.- Done!

Tuesday, April 15, 2014

Gluten Free WonderMill Bread( dairy free, soy free, nut free)

Grinding my own grains/seeds for gluten free bread made me feel a little bit like Henny Penny. Not a bad thing at all! Now to just start growing my own too! :-) For this loaf I ground white rice,brown rice and Teff. (I also use potato starch and tapioca starch in my blend)

Overall, I love my WonderMill. It makes pretty much "instant" flour. It has 3 options for texture of your flour. Coarse,Bread, and pastry.
I find the "bread' option(recommended) for texture is a little coarse for making a soft white bread. So for a soft white bread I use the Pastry option.

The WonderMill does a terrific job of grinding so fast, and it is very tidy! So, far I am absolutely thrilled with my investment.

I may have shared this bread recipe before, but I have been slowly trying the psyllium husk powder instead of using guar gum to see how I like it. So far it is working well. With this loaf I did half guar gum and half psyllium powder. Nice and tender. Unfortunately, Abby is still avoiding yeast so she wasn't able to give this loaf a try. Derek thought it was wonderful though and with a loaf of this around he doesn't miss gluten at all!

3 eggs
1 tablespoon Braggs apple cider vinegar
1/4 cup grapeseed oil
1/4 cup honey
1 cup coconut milk
1/2 cup coconut yogurt
1 teaspoon salt
1 1/2 teaspoon guar gum
1 1/2 teaspoons pysllium husk powder
3 cups all purpose gluten free flour blend
1/3 cup tapioca starch
1 tablespoon active dry yeast

Place in order into pan from the bread machine. (or in the order of the manufacturer's directions) I mixed my coconut milk and yogurt together before I poured them in.

If you have a bread maker that has a gluten-free option use that. On the Zojirushi breadmaker I used the basic function and dark crust.

Tuesday, April 8, 2014

A Spoon Full of Sugar

One of the things that has been key for Abby to stay stable has been sugar.

I assumed that since it is easy energy it gives her body enough energy to digest more complex foods, but maybe there is more to it. Breast milk, formula's, elemental formula's, IV's- all full of sugar. Delicate bodies appreciate some easy energy. Young,old, sick..

Even if there isn't more to it, knowing that they are finding mutations now that they are trying to treat with sugar? Makes Abby's food needs seem less oddball.

I ran across an article about a new genetic syndrome caused by PGM3 mutation. Guess what they are trying to treat it with? Yep, Sugar!

Abby has some of the symptoms but not all so I am doubting this is her mystery disorder, but perhaps it is a step closer.

Here is the Link-----

New genetic syndrome identified that includes allergy, immune deficiency, neurocognitive impairment

A few favorite snippets:

March 4, 2014
NIH/National Institute of Allergy and Infectious Diseases
A new genetic syndrome has been identified, characterized by a constellation of health problems, including severe allergy, immune deficiency, autoimmunity and motor and neurocognitive impairment. The researchers observed that the syndrome's diverse symptoms are the result of mutations in a single gene associated with sugar metabolism.

The study, published in the Journal of Allergy and Clinical Immunology, involved eight patients from two families. The families were originally referred to NIH because of severe eczema and recurrent skin and lung infections. By studying this group, the investigators found that the syndrome is caused by mutations in the PGM3 gene that result in the production of underactive PGM3 protein. The NIH team showed that underactive PGM3 leads to lower levels of sugars that are essential for glycosylation, or the attachment of sugars to proteins. Glycosylation is necessary for the normal growth and function of all tissues and organs in the human body. The variety of symptoms in people with PGM3 mutations likely reflects the production of abnormally glycosylated proteins throughout the body. In the laboratory, adding a certain type of sugar to cells from patients with PGM3 mutations boosted cellular levels of the sugars necessary for glycosylation, thus suggesting a potential treatment.

Hoping Science hurries up and catches up with Abby, reading these type of articles makes me more hopeful.

Saturday, April 5, 2014


With the normal ups and downs of the last couple years, another birthday tomorrow.

I cannot believe she is 19. I still see her just as I did when she was little. Cute then, and cute now. :-)

We are relieved to officially have closed the book on trying any more IVIg(subQ)- the reaction and damage was only getting worse. The only "new" and lingering effect is her oxygen still drops to 94-95 when she is upright and won't correct until she is down again. Hasn't slowed her down too badly, and we figure this too will pass. Abby's body is quite remarkable in how it manages to straighten it's self out after each insult. Rest, rest, and good nutrition as well staying moving on her feet seem's to be the best formula for recovering for her. Unless it was dropping regularly into the 80's no sense in fretting or running to a Dr. over it. "It is, What it Is".

She is still needing a bit more sleep but almost everything is settling down. Her kidneys decided to act up this week, but perhaps it was simply the tail end of getting that junk out of her body. Food hasn't been too much of an issue, but we kind of have it fine tuned now as to what is safe to eat when she is flared, and what to avoid. That has made any flare in symptoms much easier to handle for her and her recovery time is generally much faster. The insane pollen count is doing her no favors right now. Full bucket leaves us on high alert and prevents me from trying too many new foods with her. Looks like a good rain this weekend which will help wash away the overwhelming choking pollen. I am kind of with Abby on the pollen and so is Sara, the sooner it is gone the better we will all feel. Even our poor poodle Evie has red rimmed eye's and itchy skin.

I admit, I was really hoping last year that when 19 came around we would have her back in college by now. On the other hand, despite the ups and downs she is still holding strong, and for that I am very grateful.

It is frustrating that we still don't understand "why" she reacts so violently to every medication , I don't think Mast involvement is the full answer to that question. However, Abby is constantly changing, given time her body seems to have it's own method to it's madness and we just need to stay patient and keep out of her bodies way, her body know's what to do.

Maybe by next year we will have figured her out and gotten her to a better place, we are working on changing a few things up to see how that works for her.

I tend to be so opinionated, so swept up by the moment. Abby continues to be grace under fire. She truly finds joy and satisfaction with the smallest things. A great movie will keep her smiling, a great email from a friend, time with me, her sister, her Dad. Probably the most balanced person I have ever met.

While I wonder where she will be health wise next year, she doesn't worry about it. She enjoys the day.

Happy Birthday Abby!

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