Tuesday, November 30, 2010

Sweet Freedom Bakery: It's Gluten-Free and Allergy-Friendly!

Recently, a friend passed along a link to a new bakery in Philadelphia, called Sweet Freedom Bakery.  She said it was worth trying as they cater to those who need allergy-free and gluten-free foods, so I took a peek at their website.  I was amazed!  The variety is fantastic and they list all of their ingredients as well as allergy information.  It is clear that they have experience with food allergies. 

I decided to pack my family in the car and take a drive over the bridge to check them out.  There is seating available inside of the bakery, so we were able to sit down and enjoy our treats along with a cup of tea and other drinks.  They also offer a variety of teas, coffee, juice boxes, bottled water and sodas with agave nectar.

Sweet Freedom Bakery is located at 1424 South Street, between 15th and Broad Streets and can be reached at 215-545-1899.  Parking is available on the street or at one of two parking lots on the same block.   Their hours of operation are Tuesday through Saturday 10 am - 7 pm, Sunday 10 am - 4 pm, and they are closed on Monday.

The bakery is owned and operated by Allison Lubert and Heather Esposito.  Heather is also a natural gourmet chef and they are both certified holistic health counselors.  They opened Sweet Freedom in January of 2010 and have been serving very happy customers ever since. They offer a variety of cupcakes, muffins, donuts, cookies, loaves, and classic favorites such as brownies, blondies, macaroons, oat crumble and magic bars.  There are some seasonal selections, as well as some new and changing items that are not listed online.  All of the ingredients are clearly displayed with each selection.

During our visit, we tried a chocolate cupcake with chocolate frosting, chocolate donut with chocolate frosting, ginger snap cookie (a seasonal option), carrot cupcake with vanilla frosting, "magic bar" and vanilla crumb cake with chocolate ganache (which is not listed on their website).  We savored every bite of every treat.  They were all absolutely delicious.  What's more, they are free of dairy, egg, wheat, gluten, soy, peanuts, tree nuts (with the exception of coconut), and even refined sugars. They use a variety of gluten-free flours, such as rice, garbanzo, fava, tapioca and sorghum, and they use natural, unprocessed low-glycemic sweeteners such as coconut sugar, agave nectar, and maple syrup in lieu of refined sugars.

This was the first time my son, who has Eosinophilic Esophagitis and reacts to multiple foods, was able to eat any baked goods that I had not made myself.  It was a very special moment.  His favorite was the magic bar.  It isn't possible for me to choose just one favorite from all that they offer.  I am torn between the magic bar and vanilla crumb cake with chocolate ganache.  They also had cookie sandwiches that were very tempting, but considering all that we had already tried, we were quite content.  I guess we'll just have to plan another trip to try them, too. 

Anyone who would like to taste test these sweet treats for themselves, but are not close enough to visit in person, can place an order for delivery.  They ship anywhere in the country via UPS.  Just call them at 215-545-1899 for details.

Sweet Freedom's website is http://sweetfreedombakery.com.

Wednesday, November 24, 2010

Dealing With Food-Filled Holidays When You Can't Eat Like Everyone Else

This year we are staying home for Thanksgiving, and it will just be our immediate family.  Just the four of us, along with the dog, and the cat.  This is in contrast to most years, when there were large Thanksgiving feasts with the in-laws, which is a very large family.  So, how does one deal with that when you or your child can't eat like everyone else?  What if you or your child can't eat at all, as is the case for so many children with Eosinophilic Esophagitis and Eosinophilic Gastrointestinal Disease.

As adults, we can make informed choices and we might stick with the diet that keeps us healthy, or we may decide that we are going to suffer the consequences of a "forbidden" meal.  Our kids, however, are a different story.  What we do to our own body is one thing, but we can't consciously expose our kids to something that is going to make them sick and have them suffer the consequences.  While I have heard that I need to have my son "suck it up" and "deal with it" ("it" being the pain, nausea and vomiting), I don't subscribe to that way of thinking.  How is it ok to knowingly make your child sick when you have other options and can keep him or her healthy?  We have had the occasional "cheat day" in the past, but have learned from those mistakes.  We know what the consequences are, and it is not worth it.

So, how do you deal with it?  I can only tell you how we have dealt with holiday celebrations in the past and how we plan on doing so in the future.  In the beginning of our journey with eosinophilic esophagitis, when my son was not able to eat anything and was only getting the elemental formula, we stayed home during the meal and dessert.  He was six and seven the two years that we did that.  It wasn't worth him having an awful time, acting out, and crying afterward.  My in-laws live nearby, so I sent my husband and daughter ahead to spend time with his family, and I stayed home with my son until everyone was finished eating.  We joined them after dinner and dessert were over.  That way, there was some quality time with the grandparents, aunts, uncles and cousins without the stress and anxiety over the food that he couldn't eat.  I made sure he had something to keep him busy and content.  Nintendo DS, with a few games to choose from, worked for him.

Every child is different, but if your child is feeling very left out, why make them feel worse by eating a special meal in front of them? There are different schools of thought on this, but that is my opinion.  If my child was not bothered as much as he is by others eating in front of him, I probably would have done things a bit differently. You have to do what is right for the individual child.

As he gained some foods, we changed the way we handled the holidays.  I would make a safe meal for my son and take that with us.  If there was something he could have for dessert, I would bring that, too.  I tried to make it something very special for him.  I would make his favorite of the safe foods and have him choose from his safe treats, like a safe brownie or cookies, so he would be less likely to feel left out.  When I was able to make things that we could share with others, I did so.  Now that his food repertoire has expanded, we can make several options that are good enough to serve to everyone.  I am not going to pretend that he wasn't bothered by the fact that he couldn't eat what everyone else was eating, but he was able to handle it much better when he had something he really enjoyed, especially if other people thought it looked really good, too.

The cousins have grown and moved out of their family homes, and have significant others of their own, so the large family is spending time apart this Thanksgiving.  We will have to make changes in the way we celebrate, too.  This year, I will make some of our favorites, altered so that they are safe.  There is a pumpkin pie recipe in The Allergen-Free Baker's Handbook that I would like to try.  Perhaps Thanksgiving Day would be a nice time to try to make one together, as a family.  That may make a nice Thanksgiving memory, and perhaps it will be the start of a new tradition.  I haven't tried to make a safe pineapple bread pudding yet, and that was always a favorite.  It'll be rather expensive in comparison to what it would cost with regular bread, but if it is special and everyone enjoys it, then it will be worth it. 

Another of my preferred activities on Thanksgiving is to take a trip down to Washington, D.C., especially when there are no family feasts planned or extended family to see.  The museums are free and are open for the holiday.  Crowds are light.  That makes it a very nice time to visit.  Hotels often have specials for this particular holiday and you might even be able to get a room within walking distance of the mall (the outdoor mall with the museums).  The Metro is always a good option to get around there, too.  No matter where you live, there is likely something fun you can do over the holiday that is not food-related.  You just have to be creative.  Do you live in a warm climate?  Do you like to hike or camp?  You might also just decide to hole-up, cuddle on the couch and watch some movies or spend time doing crafts, playing cards or board games as a family.  The options do not have to be costly.

Whatever you are doing this holiday season, make it special.  While life seems to revolve around food, it does not have to be that way for your family.  You can still make it special without the feast.  You can still make memories that will last a lifetime.  For suggestions about how to deal with celebrations, please go to APFED's website under their Advocacy tab.  You'll find A Guide to Celebrations Without Food .pdf file with wonderful ideas for each of the holidays and all other types of celebrations.  If you are looking for some recipes, using what foods are safe for you or your child, you might want to try Living Without Magazine which can also be found online at http://www.livingwithout.com/.  They have some great ideas.  I also have some cookbooks listed here under "Helpful Books, Handouts and Cookbooks", which are available online at Amazon.com and are likely in your local bookstores as well.  Kids With Food Allergies also has a lot of good recipes available to members, and they have some free Thanksgiving Survival Tips

Have a wonderful Thanksgiving, and please remember to be thankful for all of the things that you DO have and all of the things that are GOOD in your life.  Everyone faces certain challenges during their lives, whether they are obvious or not, but it's important to focus on the positives and, as a wise Python once said, "Always Look on the Bright Side of Life." (Do do, do do do do do do...)

Tuesday, November 23, 2010

New Food Trial Under Way: Beans, Buckwheat and Berries, Oh My!

The latest food trial is under way. As the title of this post has already revealed, we are working with beans, buckwheat and berries. In addition, we have thrown in peas and flax. Peas have provided us with a new margarine, Earth Balance buttery spread (soy-free), as well as a new cheese substitute, Daiya cheese. Both are dairy-free and use pea protein in lieu of soy. Even better is that we can now buy a frozen mac & "cheeze". Amy's brand has several versions, but they now have a gluten-free version that is made with Daiya cheese. They still have one with soy cheese, so you have to be careful to get the correct one. Oh, and there's a hot buckwheat cereal that he is really enjoying. I have only found it at Wegman's so far. Not even Whole Foods carried it. It's Pocono brand Cream of Buckwheat Cereal.

Peas and beans have opened up a larger variety of options for my son. Bob's Red Mill G/F bread mix, which is made with garbanzo and fava flour, is amazing! I would eat it! Actually, I devour the end pieces when the loaf is fresh from the oven. It definitely beats the frozen rice bread, not that I'm complaining about that because it was a bread and was better than none at all.

I made Blueberry Boy Bait coffee cake again over the weekend. My problem is that I want to eat the whole thing myself! It's delicious! It's a recipe from Cybele Pascal's The Allergen-Free Baker's Cookbook. It's hands-down one of my all-time favorite recipes. I use Bob's Red Mill G/F flour instead of the mixture that the author uses. That gives him his garbanzo and fava beans! Sneaky, huh! :-) You can't taste any beans in there. It's amazing! I also just received my first issue of Living Without Magazine, and found a recipe for brownies with black beans! I may have to try that one, too. That would be another sneaky, but delicious way to get those things in him.

The big challenge is how to get a variety of beans into him every day. I have been alternating the beans from day to day and making meals that revolve around the beans. However, he's 12 yrs old. I think that should say it all. He isn't eating enough beans. So, it looks like I will have to start pureeing a variety of beans together and putting them through his feeding tube to make sure he gets enough every day. I really hate having to do that, but that is the one perk of having a g-tube. Yes, I like to look on the bright side of things as much as possible. When he gets tired of a food or just doesn't like a particular food that he's trialing, I can cook it, puree it, and get it in through the feeding tube, thus bypassing his taste buds.

Now, for the bad news. While we had increased his food intake over the summer, thereby decreasing his enteral feedings (elemental formula), he lost weight. He lost 10 lbs over the course of 2 months in the summer. So, we increased his feedings by a box a day. He lost another 5 lbs in a little over a month. He's back up to getting 2 boxes of formula before bedtime. We are trying to avoid the overnight feedings, as they might then throw off the desire to eat in the morning. Hopefully the increased intake of both food and formula will be sufficient to help him gain some of it back. He doesn't need to gain all of it back right away, but at least 1/2 would be nice. He should be due for a growth spurt soon, and his body will need adequate nutrition for that to happen.

Before we found out he had Eosinophilic Esophagitis (EoE), his body was not getting the nutrients it needed to gain weight and grow as he was so inflamed inside that his body wasn't able to properly absorb what it needed. When he stopped eating and went on elemental formula only, his body was getting what it needed, so he gained and grew at an amazing rate as his body caught up to where it should be. He seems to be falling behind a little bit again, but I was not concerned until he lost so much weight (and so quickly). He is turning into a skinny minnie again, but it will work out fine as we can give him what he needs one way or another. We just need to be more careful that he is getting what he needs.

The next scope won't be until sometime in January. CHOP has advised me that they are now waiting 8 weeks before scoping (8 weeks of eating each and every food in the trial every day). They are finding that more patients take longer to react than they initially thought (it can take awhile for the eosinophils to build up in the esophagus), so the 8 weeks should be sufficient. In this particular food trial, I'm breaking from the usual protocol and throwing all of the foods together because he takes 4 weeks to show a reaction anyway, so if he reacts, I'll just remove the most likely culprit and see if he gets better. If not, I'll remove another. That's backwards, but these are not the most likely triggers for him. He was fine with the bread, margarine and "cheeze" over the summer when we were taking a break, so it's unlikely that he'll react to the beans and peas. The berries, on the other hand, are the ones I would pull first if he has a problem. Hopefully this food trial will work out well.

Thursday, November 18, 2010

Oh, the Joys of Health Insurance Changes and Our Economy!

Well, while I think that health care reform is a wonderful idea and is definitely needed, the insurance companies have used it as an excuse to raise premiums, thereby forcing people to pay up or reduce their coverage. In our case, my husband's employer had to choose the higher deductibles, co-pays and co-insurance to keep their employee's premiums about the same (which still increased a bit). That was a wise decision on their part, but there was no way to get around the problems those changes pose. I have heard calls to repeal health reform, but doing so will not reduce the premiums. They are up and the insurance companies will not just bring them back down to where they were. They are here to stay. Hopefully the health care changes will make a big difference when they are implemented.

So, despite no increase in income, there are lots of increases in expenses. While it is easy to say "trim the fat", what if there is no more fat to trim? What if the fat is the outlay of money for medical bills? How do you cut that? Do you stop the medical treatment that is helping? In the case of Eosinophilic Esophagitis, where you need to do food trials and have endoscopies to determine if those foods are safe, do you stop the food trials and just be happy with the formula (if it's covered by your insurance)? Do you choose to push forward because your child's well-being relies on getting more "normal" foods so he/she can eat in the lunchroom and socialize with others vs having to take a box of formula and a feeding bag wherever he goes and explaining it to everyone? Do you choose to push forward and face those medical bills or do you choose to pay the mortgage to keep a roof over your heads and buy food to sustain the rest of the family?

What if you also have other issues to deal with in addition to the medical ones? What if you also have to address educational issues, mental health issues, developmental issues, therapies and so on? Sometimes, insurance doesn't cover some or all of the latter 3, and it never covers the educational needs. Those educational issues that are not handled by the schools (or necessitate legal representation to get the schools to handle) are out-of-pocket expenses, and they are very costly. These are often things that need to be addressed right away, yet what if you can't do that and make ends meet? There are so many more potential expenses, depending on the individual family.

On top of all of that, what if you are a single income family, not by choice but by necessity. What if the 2nd spouse wants to work (REALLY wants to work), but with all of the medical needs, etc, that person would not be reliable and would not be able to keep a job (if they were even lucky enough to find one)? What if only one spouse could work and bring home a steady paycheck, and the other had to be home (and constantly on-call) to take care of all of the other needs of the family?

This is the reality of so many people. There used to be at least a little help available to some in the form of minimal stipends and/or programs that varied by disability, state, etc., but with all of the cuts being made due to the economy, that help is being phased out or has already been cut too. So, there is even more hardship when those little lifelines are cut.

I have no answers, only questions. If I had answers, I would be sharing them with the world!