Christmas Cookies

 Decorating some gingerbread cookies that were surprisingly good and "normal"

 Bee was mostly only interested in the icing

 She got a little bit actually on her cookie.  We won't talk about her double dipping and licking of the knife.  Her cookies were placed in a special spot just for her.

 Tiger was very serious about his cookie decorating experience...He also ate all the chocolate chips when I wasn't looking

 On the cookie Bee!  Put it on the cookie!  Stop eating icing!

Who me??

 

Potato Soup

Prince Charming loves potato soup and he misses it dearly--especially my Green Chile Potato Chowder.  I miss it too.................
But we've come up with the next best thing--allergy-friendly potato soup.

4 large potatoes, cut into small cubes
chicken broth
2 or 3 bell peppers-I use a red, orange, and yellow one
1 large onion, diced
olive oil

Put the cubed potatoes into a large pot and just cover with chicken broth.  Cook until potatoes are tender.  Meanwhile, saute bell peppers and onion in another pot until soft.  Add enough chicken broth to cover and simmer.  Put the bell peppers and onion in food processor and process to desired consistency.  Add peppers and onion to the pot with potatoes.

2 T olive oil
2 T oat or rice flour
1 cup rice milk

Heat olive oil over medium heat in pot and whisk in oat flour.  Whisk for 2 minutes and then slowly add rice milk and stir until the sauce thickens into a roux.  Pour into pot with potatoes, peppers, and onion.

1 T honey
1/2 tsp paprika
1/4 tsp cumin
salt and pepper

Add remaining ingredients and salt and pepper to taste.

It's not the creamy potato chowder that we miss, but it is a close second and is thick and creamy and disappears fast.

Reaction

So many times Bee has a reaction and I can figure out what she reacted to.  And then other times, I just have no idea and it can be so very frustrating.  The other day, the kids were cooking in the play kitchen and Bee put on her little apron.  Within minutes her entire chin and neck began to break out.  I was able to undress her, bathe her, and lotion her before the rash spread over her entire face.  About an hour later she had a secondary reaction and one side of her face broke out.  I felt like I was fighting a losing battle.

Usually she's safe at our house, but not this time.  We've tried to determine what happened and the only thought we have is that her reaction had something to do with the number of kids and parents we had over at our house for Curly and Tiger's birthday party.  The kids were all touching the toys and many of them played in the play kitchen and with the aprons.  If one of them had something on their hands from breakfast and brought it into the house, then it could have caused Bee's reaction. 

I think I'm going to have to institute a new policy-if you come over to our house you must wash your hands when you first come in.  While I'm not sure that this was the cause of Bee's reaction it's my best guess.  How am I going to ask everyone to wash their hands when they walk in the door?  They are going to think I am such a fanatic.......not only do I not allow anyone to bring in outside food but now you have to wash your hands when you come over.  Maybe next I'll just give everyone sterile gowns to don over their clothes, then I'd know they didn't bring any food particles in the house....

Tortillas

One thing I have missed since going gluten free is flour tortillas.  Now that Bee can eat some corn, we can have corn tortillas which has opened the door for some creative Mexican food recipes.  Unfortunately, no one in our house is very fond of corn tortillas....

Enter the rice flour tortilla.........I've been wanting to try to find a recipe for a GF tortilla that I can make myself although I have never made a tortilla before-regular or otherwise.

Hubby had the idea and asked me to try it, so we did.  And we were surprisingly successful!

GF Tortillas
4 cups rice flour
1 1/3 cup potato starch
2/3 cup tapioca flour

Combine flours in large bag and mix thoroughly.

2 cups flour mix
1 1/2 teaspoon xanthan gum
2 teaspoons sugar
1 teaspoon salt
1 cup warm water

Combine the dry ingredients and mix.  Add the water and mix with hands until the dough holds together.  Separate the dough into 8 pieces (or 16 if you want smaller more kid-friendly tortillas) and roll into balls.  Place the balls of dough in a bowl and cover with plastic wrap.  Take out one ball at a time as you are ready to work with it.  Flour your surface well and then roll out each tortilla.  The trick to rolling out your tortillas is to turn the dough a quarter turn after each time you roll it.  This helps keep the tortilla round.  Roll out as thin as possible without causing the dough to tear or have holes.  Place on a hot griddle that was warmed on medium high heat.  Cook a couple minutes on each side until the tortilla puffs up and becomes slightly browned.  Place the cooked tortillas between slightly damp, warmed towels.

 Perfect tortillas

Note that this tortilla is rolled without any cracking or breaking...if you've ever bought some store-bought frozen rice tortillas you understand the importance of being able to fold a tortilla.

These tortillas can be rolled up!

These made for some amazing fajitas!  Hubby thought they tasted nearly normal and I was so excited I think I ate 4 or maybe 5...........

Omega-3

We aren't sure if Bee has a fish allergy or not but we want to make sure she receives enough of the Omega-3s and other supplements, such as DHA.  It is hard to find supplements that are not from fish sources but the Pure One supplement is from plant-based sources and is safe for Bee.  I cut open a capsule and pour it in one of her drinks during the day to boost her Omega-3 intake. 

Other days I add some Salba Seed Oil to her drinks to give her a different source of Omega-3s.  They also have the milled salba seeds which can act as an egg-replacer when mixed with water for some recipes or can be added to smoothies or hot cereals.

Flour Blend

Jules Flour Blend is one I have used in the past with great gluten-free results.  Their site even has recipes and some are free of other allergens or would be easy to make substitutions.  She has a new cookbook out called Free For All Cooking and it is the most recent addition to my cookbook collection.  After the holidays, I'm going to get it out and get started.  In the meantime though, I think I need to try to the ginger snaps...

Doctor Appointment

Bee enjoyed watching the fish as we waited for our pager to buzz for our appointment.
After our pager went off, we were whisked behind the purple door-all the door are color coded- and taken to one of the back rooms.  This time we were in an infusion suite which is where other kids are given immunoglobulin infusions among other things.

Our first visitor was one of our doctors.  I brought out my list and we went through all of our questions and experiences for the past six months as I brought her up to date.

Next up, the nurse came to get us to weigh and measure Bee.  She has gained 3.5 pounds since our last visit and is now steadily tracking up the 25th percentile growth curve.  This is a huge blessing since she had completely fallen off any of the growth charts at one point.

Back to the room to wait for the other doctor and in comes the nutritionist.  We go through some of our typical meals and go through several days of a typical breakfast, lunch, and dinner at our house.  We talk about supplements and some of our options.  She decides that olive oil is still probably the safest and best cooking oil for us right now and that Bee should alternate between rice milk and hemp milk.  Bee should take a multivitamin, a vitamin D supplement, and calcium.  We discussed types of flour and grains and she felt we had a good variety with buckwheat, brown rice, tapioca flour, potato starch, millet, and sorghum.  She mentioned quinoa but we've tried that in the past and Bee reacted to it.  We'll wait on that one.  A new one to try might be teff flour which is higher in protein. 

Finally, our other doctor made her appearance.  We went back through my list.  She agreed to retest Bee's IgE levels to certain foods and we made a list of which foods to test.
She felt we should up our lotion to twice a day for the winter to keep Bee's skin hydrated and eczema free.
The doctor said we should avoid any food that causes a slight skin rash even if Bee does not develop hives as she is obviously, at the very least, sensitive to this food and could still have an anaphylactic reaction to these foods.  That means that oatmeal will be out for a while again...
We discussed the holidays and other group get togethers which always have food.  She encouraged me that we do have to be very vigilant with Bee as she is so severely allergic and can have a reaction even if certain foods are in the air.  Her response, "Sometimes you have to be the mean parent who keeps other children away from yours or who has to leave the event.  No one will understand and most people will view you as the crazy parent.  But I understand and the severity of Bee's allergies warrants that type of caution."  Well, it's not fun to hear that we'll never to normal but it is nice to know that she understands, knows I'm not crazy, and encourages the obsessive behavior.  Hey!  I have the doctor's orders to be paranoid and obsessive!
We talked about the new baby, how to handle those potential allergies, and how to determine if the baby will even have allergies.  She decided that we would meet again before the baby was ready to try solids to discuss which foods we should start with and which foods we should hold off for a while.
She felt fairly confident that Bee would outgrow her wheat and egg white allergy but was not as confident that she would outgrow her dairy allergy given how sensitive she is to dairy.  The doctor believed the peanut and tree nut allergy might be here to stay.  She also cautioned us to avoid fish until after Bee was 3 even though we were hoping we could try some fish sooner than that.

There are several things I appreciate about our doctors.
1-They always encourage me and are so supportive of our dietary changes, and they try to stay so positive.  I feel like they are actually compassionate and understanding of how difficult and life-changing it is for us to continue a somewhat normal life.
2-They never treat my questions as crazy and are never condescending.  They actually listen to my questions and concerns and believe what I say regarding our previous experiences and reactions.
3-Sometimes their answer is, "I don't know."  They acknowledge that they don't know everything and that predicting and determining food allergies is not an exact science.  So, sometimes there is not an exact answer, a definite, or a rule.  They treat parents and children as individuals and know that each child and reaction is different. 

After our lengthy visit, we were sent to the lab and then finally headed back home for our 1 1/2 hour drive.  That was one long day!!!

Testing

At out latest appointment we decided to redo some of our blood tests to check Bee's IgE levels.

We decided to have another RAST blood test done.  This is a simple blood draw.  The blood is tested for elevated IgE levels in reactions to certain foods.  This is safer than a skin prick test or a food challenge for people who are highly allergic like Bee.  Unfortunately, the test is not always 100% accurate, especially in children.  There can be false negatives, and a positive result or an elevated IgE level does not necessarily indicate a true allergy.  The skin prick test can also have false positives.  The most accurate test is a food challenge....scary!

Because there are fewer studies done with children in regards to food allergies, some of the blood tests for certain foods is less accurate.  However, according to our doctor, the tests for wheat, egg white, dairy, and peanut are the most accurate of the foods tested through blood work.  We decided to have those foods tested along with several other foods to compare her levels to our previous tests.

In our first RAST test, Bee's level of IgE for those 4 foods was extremely elevated, with wheat having the highest results.  We're now wondering if her results for wheat will have dropped and if her dairy results will still be high as she seems to have the most problems with dairy.  However, with IgE blood tests, the level of IgE to a certain food does not necessarily indicate how severe a reaction will be.  Even with a positive result, a person may not even show a reaction to a certain food.  For example, in our last RAST test, Bee had a positive result to several types of legumes.  She now eats all types of legumes without any problem, yet her test was still positive.  People can have a positive result against any food, with or without a reaction, and can even have a positive result after outgrowing an allergy.

We had a false negative result in our original RAST test as well.  Bee did not have elevated IgE levels to tree nuts.  I began avoiding peanuts and allowed our other children to have other nut butters as a safer alternative.  I did not allow Bee to have any type of nuts just in case.  One day she accidentally touched some of Tiger's almond butter and got some on her face.  She had a severe allergic reaction and we ended up at our local fire station with Bee on some oxygen.  Bee is definitely allergic to tree nuts even though her results were completely negative.  In June we had a skin prick test to test for an almond allergy and her results were very positive, confirming the allergy.  However, in our skin prick test, Bee had slightly positive results for oranges, which she has eaten without any problems.  The skin prick tests can be less accurate in people who have eczema, like Bee, because the skin problems make the test results more difficult to read. 

Allergy testing is confusing, sometimes inaccurate, and can be very frustrating.  We've learned to keep a record of what Bee has eaten and to watch for reactions after coming into contact with new foods-whether on purpose or on accident.  Our experience has to be our best guide.

Guinea Pig

Here's to my sweet taste testers and to my two big kids who happily enjoyed allergen-free cupcakes and treats for their birthdays.......just so Bee could enjoy the treats too.

It was a double birthday bash at our house as Curly turned 5 and Tiger turned 3.  Bee greatly enjoyed the birthday cupcakes....

Food Families

Can you predict food allergies?  I've been learning about food families and which foods are inter-related.  Therefore, if Bee is allergic to a certain food, I can cross-reference that food family and find out what other foods we should avoid as well.  Saves me from some scary trial and error. 

Here are some things I've discovered through our recent doctor's appointment and through searching food families:

Bee has a problem with banana and avocado.  We noticed her breaking out in a slight rash after eating watermelon this summer.  The doctor confirmed that some children who have trouble with banana also have a problem with avocado and with watermelon.  The fourth food that she linked to this category was kiwi, which we have never tried, and now I don't plan to try it anytime soon based on the doctor's recommendations.

Bee has a sesame allergy according to her blood tests, but we've never accidentally had a sesame contamination so I've never seen her react.  Recently, Bee had a reaction to sunflower butter.  Sesame and sunflower are both in the same food family.  We'll be avoiding the composite family (aster) for a while, which includes artichoke and tarragon and even ragweed. 

Because of Bee's sesame allergy and sunflower allergy, we were worried about a poppy seed allergy.  But poppy seed is not related to sesame or sunflower as it is in a separate food family.  This would help explain how she was able to eat allergy-free lemon poppyseed muffins last week.  She had no reaction to the poppy seeds so we're going to say that poppy seeds are safe for now.

Another new link I learned about from our doctor visit was that some children who have a tree nut allergy also can be sensitive to coconut and that these allergies sometimes go together.  Other kids do fine with one food or the other.  Bee has shown some sensitivity to coconut lately which would go along with her extreme tree nut allergy.

Pineapple is in its own food family and is not part of the citrus family.  Bee reacts to pineapple but not to any other citrus fruits.  So, after looking through food families there are no other foods related to pineapple that we need to avoid.  Some people think of pineapple as citrus and avoid the citrus fruits if they have a problem with pineapple.  They would probably not need to avoid citrus on the basis of a pineapple allergy.

We've questioned if Bee has a sensitivity to mango.  She has reacted to mango in the past but has eaten it a few times lately with no reaction.  Oddly enough, mango is in the same food family as cashews and pistachios.  And if Bee is truly allergic to all tree nuts, this would include cashews and pistachios and would explain her sensitivity to mango.  Because we were unsure of her mango allergy, we have been avoiding papaya.  But papaya is in a separate food family from mango and would probably be safe for us to try.  That may be our next new food to try.

I'm going to keep our food family chart handy as a guide when we try new things or if we notice a new reaction.  We're still learning.....

Rice Krispie Treats

You can make Rice Krispies that are allergen free!  Use your Rice Krispies or your Crispy Rice Cereal and use olive oil instead of butter and some marshmallows.  You can't taste the difference.....

Vitamins

I never realized how hard it would be to find an allergen-free vitamin..........wow...........

Here are the ones we've tried so far with success.

Liquid Health Children's Multi which is free of sugar, starch, salt, wheat, gluten, yeast, milk, or soy derivatives. 

Nature's Plus Calcium with Vitamin D which is free of dairy, soy, gluten, and yeast.  It is hypo-allergenic and vegetarian as well.

Vitamin D drops from Carlson Labs

Cupcakes

Baby Bee's first cupcake......and I'd say it was a huge success!  These are chocolate chip cupcakes with chocolate chip icing from the Allergen Free Baker's Handbook.  I'm making another batch tomorrow.  They don't last long..........

Doritos

I know people probably think I'm crazy as I scope out what their child is eating.  They think I'm nuts as I obsessively pick up dropped Cheerios and other deadly snack foods off the floor.  They think I'm totally paranoid as I try to keep my kids separate from the other kids during eating times.  They think I am crazy and hyper-supermom as I bring all of our own snacks and food to every event.

You know, I think I'm crazy too.  I never thought I would ever have to do these things or worry like this.  I don't want to be paranoid and obsessive.  But I am justified.........

Take a look at Bee in this picture.  This is after medicine, a bath, lotion, and more medicine.  This is a good hour after the initial reaction.

This is a picture of an allergic reaction after...........wait for it...........she picked up a Nacho Cheese Dorito and started to put it in her mouth.  I leapt out of my chair and across several small children to snatch that one tiny broken Dorito chip from her hand.  I grabbed her up, cleaned her hands with wet wipes, wiped her face, and took her far away from the Dorito-dropping children.

Yet, we still ended up leaving the event within a few minutes of our Dorito scare all because Bee started to get very itchy and fussy-which is never a good sign.

I can only imagine what would have happened if she actually ATE that dumb Dorito.

So, for all of you who think I'm crazy, I'm obsessive, I'm paranoid, or I have some type of crazy supermom-syndrome:  Get over it!

Try having a little compassion.  Know that I don't want to live like this, no one does.  Where you see food, I see ER visits.  Where you see cute little Goldfish crackers and candy bars, I see rashes and anaphylactic shock.

We view the world with different perspectives.  And some days I would give anything to be able to see the world the way you do.  But that's not possible.  So for now, try to understand my viewpoint.

I don't need you to turn up your nose and whisper that I'm crazy.  I already know that.  But my craziness is justified.  I even have pics and ER visits to prove it.

So anytime you meet an allergy mom, have some compassion and know that life with allergies is a huge challenge.  And please keep your food to yourself............

Pumpkin Cookies

My mom emailed me a cookie recipe and boy is it good!  We had these for Thanksgiving instead of pumpkin pie-the kids aren't pumpkin pie fans and I'm not either.  We'd rather eat cookies!

Pumpkin Cookies
2 cups GF flour blend (I use 4 cups rice flour, 1 1/3 cups potato starch, 2/3 cup tapioca flour)
1/2 cup oat flour
1 tsp baking soda
1 tsp baking powder
1 tsp xanthan gum
1 tsp cinnamon (I think mine is more of a heaping tsp)
1/2 tsp nutmeg
1/2 cup shortening
1 1/2 cups cugar
1 1/4 cups canned pumpkin
1 T egg replacer mixed with 2 T rice milk
1 tsp vanilla

Preheat oven to 350.
Beat all ingredients in large bowl until completely mixed. 
Place by spoonfuls onto parchment lined baking sheet.  Wet fingers and gently flatten and shape cookies into little round disks.  (If you don't shape them you will have ugly pumpkin mounds as the cookies don't flatten as they bake).
Bake 18-20 minutes.
Cool on wire racks and sprinkle with powdered sugar.  Chewy, yummy!

Doctor

Well, we have another big appointment coming up for Bee.  We visit the immunologist next week and I've got to get busy preparing for our appointment.  Here are my thoughts and questions for the doctor so far:

I plan to ask about food challenges and discuss some of our food challenges that we did at home.  Hopefully our immunologist won't be too mad at me.......
We tried beans and corn and everything seems fine so far..........
So what can we try next?

Can we try egg yolk if we separate the eggs?  Will we ever be able to eat eggs again?????

Can we try banana?

Avocado?

Kiwi?

Wheat?  We had a Cheerio accident and nothing happened even though she had Cheerios in her mouth......so is her wheat allergy better?

Can we restest some of the original RAST results?  And her IgE level?

She has had fish oil supplements with no problem so can we try fish?

We tried sunflower butter.......that was a total no go as Bee's mouth broke out in a huge rash.  What other things should we avoid that are related to sunflower seeds?  Can we test for sunflower allergy?

What about foods that are fine when she eats them and she loves to eat them, like oatmeal and watermelon, but if they sit on her face, she breaks out slightly?  Why do some foods make her break out only if they touch her face?  Should we avoid those foods as well?  Is there a difference between an internal allergy and a contact allergy?

Why does her milk allergy seem worse?  Now we cannot even touch her after touching dairy or she will break out in severe hives.  What can we do?

On the upside, her eczema has improved dramatically and she doesn't itch constantly.  So we are making improvements!

We'll see what the doctor says this time...........