I have spent so much time and energy making terrible loaves of bread by bloggers that state it is the best loaf of bread they have had in years. None of them were good. Until I found this recipe. I tweaked it so much, it isn’t really the original recipe anymore. Part of the problem I am sure is my oven, so you will need to figure out your timing cause mine takes way longer to bake fully than any other bread recipe I have found.
So if you find your bread collapsing after pulling it out of the oven, try leaving it in longer. Or using a thermometer to track your bread to take it out at the right time.
Delicious Gluten Free Sandwich Bread that works great for toasting or french toast. May take some tweaking to make it perfect, but when you do, you won’t look at another gluten free loaf of bread the same.
Ingredients
Dry Mix 150 grams White Rice Flour 95 grams Brown Rice Flour 123 grams Arrowroot Starch 95 grams Tapioca Starch (Flour) 1 1/2 tsp Salt 25 grams Psyllium Husk Powder
Wet Mix 500 ml warm water 2 Tbsp Sugar 7-8 grams Active Dry Yeast 3 Large Egg Whites (lightly whisked) (1) 2 Tbsp Melted Butter (50g) or Oil 1 tsp Apple Cider Vinegar or Rice Vinegar
Directions
In a mixing bowl add the dry mix ingredients and mix well together.
In a separate bowl dissolve the sugar in the warm water, mix in the yeast and let foam for 10 min
Add the butter/oil, egg white, vinegar and yeast mixture to the flour.
Beat with the paddle attachment in your stand mixer for 5 min, this is important to let the flours and psyllium husk fibre hydrate. IF USING: EMILE HENRY BREAD LOAF BAKER
I use the Emile Henry bread loaf baker. I lightly oil the pan and dust in brown rice flour.
Using a spatula, ease your mix into the pan. Shape and smooth with the back of a Tablespoon dipped in water regularly to get a nice smooth top to your loaf.
Leave in the pan for about an hour to proof, or until doubled in volume.
Preheat oven to 425F
Place the pan in the center of the oven (with the lid on) for 70-95 minutes or until crispy and golden. Test the temperature of your bread (should be 208-212F) to be cooked properly.
Remove Loaf baker from the oven, allow to cool with the lid on for at least 15 minutes to allow the crust to crips and the bread to cool slowly.
Allow to go completely cold before cutting. IF USING A PULLMAN TIN/METAL LOAF PAN
If using a metal loaf pan, line with parchment paper to prevent leaking and sticking. Pullman tin (21.5×12.3×11.4cm) is the recommended pan for this loaf. You want a 2 lb bread loaf pan that has higher sides to prevent the bread from collapsing. Use without a lid.
Using a spatula, ease your mix into the pan. Shape and smooth with the back of a Tablespoon dipped in water regularly to get a nice smooth top to your loaf.
Leave in the pan for about an hour to proof, or until doubled in volume.
Preheat oven to 425F
Place the pan in the center of the oven for 40-50 minutes or until crispy and golden. As you put it into the oven, tip a small cup of boiling water into a tray in the bottom of your oven to create a steamy environment.
If it is browning too quickly, cover with some foil around 35 minutes. Turn the oven down to 400F for the final 15 minutes. Test the temperature of your bread (should be 208-212F) to be cooked properly.
Pop the loaf, out of the tin, into the hot turned off oven for up to 15 minutes to let the crust crisp and the bread to cool slowly
Allow to go completely cold before cutting.
Notes: (1) Eggs – Large eggs = 2 oz per egg on average
Someone else shared this about celiac disease and I have edited and added to it to be about corn allergies. #allergyawareness #itshouldntbethishardtolive
Imagine Corn Allergies
Imagine, if you will, finding out you have a disease or condition where food makes you sick. At best you have multiple symptoms, all the time, ranging from a rash, to hives, to vomiting and diarrhea. At worse, it can cause anaphylaxis and death.
Imagine never being able to eat the same food as people around you. Always having to watch what you eat. Having to eat food that not only doesn’t taste very good most of the time, but is very pricy.
Imagine having to eat like this day after day, week after week, month after month, year after year for the rest of your life.
Imagine going places with other people and they want to try your food, just to see what it tastes like. Imagine having to stand there and listen to them ridicule the food and go on about how bad it tastes. Imagine being the one standing there knowing your food is not the greatest tasting but you don’t have a choice to eat the more tasty version, unlike them who can go back to eating as always and not having to give up taste in exchange for their health.
Imagine having to cook every meal at home, every day, breakfast, lunch, and dinner. Imagine not being able to simply order take out when you don’t feel like cooking. Imagine coming home at night, tired, hungry, and exhausted from the day and not knowing what to eat and too mentally and physically exhausted to think about it. Imagine sitting there crying because you are so tired and overwhelmed by doing this day after day, with no end in sight, but you still have to cook your meal for that evening or just remain hungry.
Imagine worrying about reacting to food particles in the air, so you can’t go to that restaurant that uses flour and bakes from scratch, or go to a petting zoo for fear of reacting to their feed, or even go to a pumpkin patch because what if they have a corn maze or a corn play pit for the kids. Imagine wearing an N99 mask to go anywhere there is popcorn being popped (the mall, car dealerships, farmers markets, hardware stores) for fear of reacting to the popcorn in the air.
Imagine going to the grocery store and taking twice as long to shop because you have to read every label to make sure you won’t get sick, and having to trust that there are no hidden ingredients that are not listed that will make you sick. Imagine having to worry about whether the items that are safe for you to eat really are and having to trust the packaging until you try it for yourself, risking possibly getting sick.
Imagine going to the grocery store, spending hours checking every label, only to leave with a couple items that you can eat. Imagine having to find and interrogate local farmers about their practices to know if you will react to their food. Imagine calling local ranches and farms about meat, asking about everything they ingest, then contacting the ones who slaughter and the ones who butcher and package and inquire about what products they use, how they clean, what they clean with, what they package with and if they’d be willing to use your safe products if possible.
Imagine bringing all this “safe” food home only to react after trialing it. You now have a freezer full of food that isn’t even safe for you to eat, food that was expensive and you couldn’t afford to begin with.
Imagine buying something that was previously safe, only to start reacting and after contacting the company finding out they changed the formulation but because of COVID mandates they weren’t required to change their packaging due to supply shortages.
Imagine going on vacation and not being able to go to a nice restaurant without having to worry about what you are going to eat and if the place is safe for you. Imagine having to research every restaurant and their food to be sure they have food you can eat, every time you go out to eat. Imagine being so excited to find a place that is said to be safe and has choices that you are looking forward to trying. Imagine getting to that restaurant having to ask for special accommodations and a special food menu and then having to trust those foods are what they are said to be. Imagine the person waiting on you giving you looks of annoyance, or worse, indifference. Imagine having to worry about cross contamination with anything near you or anything where the food you are about to eat was cooked or prepared. Imagine finally enjoying a nice meal out only to feel sick shortly afterwards because there somehow was corn in it, even though you took every precaution you could. Imagine knowing that this is just the beginning, that tomorrow you will feel worse until the contamination is totally out of your system.
Imagine having to watch what kind of soap and shampoo you use. What kind of makeup you use. What pots and pans and utensils you use. Why? Because they either contain corn or may be cross contaminated with corn. Imagine having to worry about feeding your pets and accidentally inhaling dust from there food only to get sick later because it was enough to get corn in your system.
Imagine not only having to restrict your closet because of the fabric and how its made, but also restricting your family’s clothes because your hand breaks out every time you do the laundry. Not only that but you feel itchy and uncomfortable just hugging someone wearing unsafe fabric. Then imagine having to make covers for all your furniture or to buy new furniture, carpets, rugs etc so that you can safely sit down. Imagine needing to replace all your bedding and possibly even your mattress just to be able to sleep safely without reacting.
Imagine knowing that this will be the way things are the rest of your life. Never again able to have your favorite pizza, your favorite ice cream, go to your favorite restaurant, or even buy your favorite brand of make up or hair products.
IMAGINE CORN ALLERGIES
It’s time to change the way society views food. It’s time to have open disclosure from companies. It’s time to question what we are eating.
It’s time to be real. I’ve been struggling the last little while. Struggling with being honest about how I am doing. Struggling with being real.
This part of my story is all related to breastfeeding and allergies and it goes back several years. I can only hope that by me sharing this I may help someone else, even just one person, to go and get support.
So to start we have to go back 27 months to when our oldest blessed our lives with her presence.
When our oldest, V, was born over 2 years ago we had some scares health wise (read all about it in The terrors of being a NICU parent) but our breastfeeding journey started out amazingly. Yes it took us a day and a very helpful nurse being a little forceful in helping V latch property. But she latched well, I got over the 3 week hump easily and I never had any cracks or bleeding or anything.
Fast forward to 3 months when we started realizing the V was reacting to something in my breastmilk. We knew something was wrong, green diapers with blood, abdominal pain, screaming uncontrollably, etc. This wasn’t my baby. I knew something was wrong.
I went to the ER because it takes 2 weeks to talk to our family doc. And he tried to gaslight me.
“Must be your cracked and bleeding nipples causing the blood.”
“um, I don’t have any cracks. She has a great latch”
“well then it must be from a milk clog”
“I pump once a day, if there was blood in my milk I’d see it”
“Well, she is happy so I wouldn’t worry about it”
What kind of response is that? How is someone being happy for a 5 minute period indicative of everything being ok health wise. I pushed to see a pediatrician and sure enough she had what is known as CMPA (cows milk protein allergy) and advised to cut out all dairy and soy from my diet, including derivatives. That list is like 40 ingredients!
I was prepared for the dairy, I already avoided most of it due to my own dairy allergy, but V reacted to things made in the same facility, so any cross contamination. I was also informed it would take 6 weeks for her to heal. The first few weeks I kept making mistakes, not reading a label twice, missing warnings on labels.
I bawled a lot. Mentally I struggled. I felt like it was my fault. I was failing her. I hurt my own baby. And it got worse from there.
I noticed after 4 weeks that she was getting better, but kept getting worse again repeatedly. Crazy enough we noticed a link after I ate popcorn. This opened our eyes and felt like we saw a light at the end of the tunnel. Little did we know how immersive corn is in our diets. I have had to completely overhaul our lives. I do a lot of food prep and honestly it is overwhelming, but something I was willing to do to keep my family safe and healthy.
One thing I wasn’t expecting was that I couldn’t keep any of the milk I had pumped while eating her allergens. I ended up donating my milk to a local mom in need of milk for her adopted baby whom she wasn’t able to relactate enough to fully feed herself. What an incredible feeling to know I could help someone else during our struggles! I think that first donation was just under 400 ounces of milk!
Things took a while to stabilize and from there we just struggled with adding foods to her diet directly. We ended up getting an allergist who diagnosed her with FPIES. Through all of this I continued to breastfeed her and we fell into a great rhythm.
Yes my diet was restricted because of her, but I knew I was doing everything I could for her. She was healthy and gaining weight. I always wanted her to wean when she was ready and after we found out we were pregnant I kept hoping she would want to wean. I wanted my body back, if even for a few months. But it wasn’t to be and I was ok with that.
Our beautiful Kae was born and she also latched well and didn’t have any nursing issues and man did I feel blessed.
And then after 3 days of V getting a bottle after Kae was born I nursed her. And I felt so beyond violated. I pushed through and helped her lay down for the night. I came out and almost curled up into a ball. I felt dirty. Violated. My skin was crawling. I didn’t know what had happened. I had never experienced that before and I was confused.
I tried to talk to J about it, but he was more confused than I was. “You just nursed her 3 days ago. Do you feel the same way with Kae?” I didn’t know what to say. I felt like I was betraying my daughter.
I had of course heard of breastfeeding aversion. Seen in mentioned in some mom groups. But usually only for people when they first started out nursing, not 2 years in. I felt like I could just plow through and it would go away.
Well over the course of the next 2.5 weeks I nursed her 8 times. And by the last time I actually had to fight the urge to throw her down on the bed and run from the room. My skin crawled. I felt resentment towards her. I dreaded bedtime. I couldn’t stomach looking at her. It just felt so horribly wrong.
To top it off I felt like I was abandoning her if I quit before she was ready to stop. Suffice to say there were many tears. I didn’t know what to do.
Finally a good friend said the words I needed to hear, “I think that switching to bottles is a really good alternative. She still gets mom milk and snuggles, but gets her mommy at the right mental space, which is so important. Your mental space is important, and you take on a lot. It’s okay to takes steps to be gentle with yourself ❤ you are a wonderful mommy. You got through 25 months of breastfeeding before that happened. You crushed it.”
What an encouragement I needed to hear. We made the transition and thankfully it went so smoothly. She only cried a couple times for me, for the most part she was totally fine with taking the bottle over nursing.
I thought our nursing troubles were behind us. I was so wrong.
Less than a week later I realized since I wasn’t nursing her anymore that meant I could eat the food she reacted to. She had gained a couple more allergies after we figured out the dairy, soy and corn. Long story short I hadn’t had eggs in 1.5 years. I ate 2 scrambled eggs and man were they delicious. My joy was short lived. 8 hours later Kae had the exact same symptoms that V got. She was in so much pain and I just knew that once again I had caused it.
What was so wrong with me wanting to eat food? Why were all my kids broken? Did I cause this? Did I somehow mess up and now they had allergies because of it? Why me?
I kept thinking, “Ok. It’s only eggs. No other symptoms. Everything else is fine. We are at baseline otherwise so I can not eat eggs. I can do this again.”
I thought I could hold it together. And then several weeks later she started to get worse. We noticed she reacted to peanuts, then pecans and cashews. Then fish and shellfish. I cut out the top 8 allergens (already gluten, dairy, soy and corn free from before). She was still reacting to something. Everytime I eliminated a suspect she got a little better. And then a day or two later she got worse after eating something else.
I didn’t know what else to do. I had been tracking literally everything that went into my mouth for a month and I couldn’t see a pattern. I tracked every possible symptom. I felt so lost. So I bit the bullet.
I started a TED (Total Elimination Diet). I still felt like I was in control. That I could do this. We would just cut down and figure out maybe one more trigger food and then I could add everything back in. This was 4 weeks ago.
I cut down to chicken, potato, apple, carrot, plum, salt, pepper and olive oil. And by that I mean literally only those whole foods. Nothing else. She got WAY WORSE. So looking at charts we cut chicken and swapped with beef, then cut potato. Slightly better. Then plum. Then raw carrot and apple. We had 4 days of everything looking like she was on the mend. Of looking like it was all worth it. And then the symptoms came back with a vengeance.
I did the only thing I could think of. I went to only beef and salt. For 3 days. I was desperate. She started getting better. We have had a few ups and downs since then, I am now eating beef, rutabaga, salt and coconut oil and I think we are almost at baseline.
Am I ok? Some days.
Am I broken? Every day.
Have I struggled. SO MUCH.
Do I feel like a failure? 100%
Do I feel like a crappy mom? I can’t hide from that feeling.
I cry every day. Multiple times a day. I have lost weight. I eat so much of those few foods in a day it’s disgusting. The amount of fat and oil I need to stop losing weight is obscene.
I feel fat, which obviously isn’t true.
I feel lost and alone.
I know I have friends, but no one else has struggled with this and it is so isolating. How do I talk to people about it without them saying I’ve sacrificed enough. I don’t want to give up. I want to keep going. In the long run this is good because we will find her safe foods. There isn’t even a guarantee that there is a safe formula, and if I lose my milk supply then I will have failed her.
So I keep going. I am struggling every day managing a baby who is obviously not feeling well and a 2 yr old who is craving attention and is incredibly jealous. I struggle with cooking 2+ meals for every meal. Of not being able to taste anything but the most basic foods. I struggle with trying to be happy in the face of depression, something I’ve never dealt with before. I struggle to feel God in these moments, to know he is walking beside me. I struggle because COVID-19 has secluded us from everyone and everything. I struggle because most days I just need a hug from a friend and a phone call just isn’t enough. I am also struggling to admit that it’s ok to struggle. It’s ok to not be ok. It’s ok.
I feel some days like I’m a piece of paper tacked by a nail to a post. Storms keep coming. The rain and wind have shredded me to pieces. I am barely hanging on to that nail. The words on the paper are my identity and the rain has washed away almost all of it. Pieces are missing. But I can’t let go, I have to hold it together for my family.
So where do I go from here? This looks so different for everyone. I guess that’s what this post is about. Everyone’s mothering journey is different. Everyone’s feeding journey is different. Some struggle with post partum depression or anxiety and others don’t ever have to worry about that. Some struggle raising one child. Others struggle raising two or more. Some want a huge family, some want only one child.
It’s time to be honest with yourself. Honest with your friends. Honest with your family. Talk about how you are doing. The good stuff and the bad. Don’t let your fears of them not understanding hold you back. You can’t get help if you don’t ask. You won’t find someone to share your burdens with if you never open up. You won’t find peace in Him if you never give your everything to Him. And for some you may never get the relief you need mentally without assistance from a medication.
So this is me being true to myself. This is me opening up. I’d love to hear about your journeys. I’d love to be a friend, to listen and be there for you. It’s time to be real.
Ever been walking along the beachfront, or at a farmers market and pass the mini donuts truck and get a massive craving for donuts that you can’t eat due to allergies? No, just me? This is a great recipe that makes light baked gluten free donuts. Definitely a must try recipe, and relatively quick to whip up. Makes me wonder why I haven’t made them in a few years.
I don’t think I am the only one out there that has yet to get pregnancy cravings, but breastfeeding cravings, those are a definite thing in this household! I may or may not have made several batches of these recently to curb those cravings. Even better than I remember them from before.
I used to make these regularly and for some strange reason I kept the recipe in my binder, unused, for several years! I recently pulled it out and make a couple new tweaks, making it better than ever.
Ingredients Donuts: 1/4 C unsalted butter/coconut oil/vegan butter, room temperature (1) 1/4 C vegetable oil (I have used olive, coconut, and sunflower oil) (2) 1/2 C cane sugar 1/3 C brown sugar/coconut sugar (3) 2 large eggs/flax egg (allow 5 min to thicken) (4) 1 1/2 tsp vanilla (5) 2 2/3 C (320 g) gluten free all purpose flour (I use my Gluten Free All Purpose Flour) 1 1/2 tsp psyllium husk fibre/1/2 tsp xanthan gum (6) 1 1/2 tsp baking powder (or 3/8 tsp baking soda and 1 tsp apple cider vinegar) (7) 1/4 tsp baking soda 3/4 – 1 tsp ground nutmeg 2 tsp ground cinnamon 3/4 tsp salt (8) 1 C milk/milk alternative (I use coconut milk) (9)
Preheat oven to 425 degrees. Grease donut pan (10)
Using your electric mixer, cream together the butter, oil and sugars until smooth.
Add the eggs, vanilla and apple cider vinegar (if using), beat until smooth.
In a small bowl whisk together the flour, baking powder (or baking soda if using), baking soda, nutmeg, cinnamon, and salt.
Alternate adding the flour mixture and the milk to the butter mixture, beginning and ending with flour. Mix on low until just combined.
Scoop batter into a ziploc bag or a piping bag, cut off the tip/corner and begin piping the batter into the cavities of the donut pan, fill almost flush to the top of the pan.
Bake at 425 degrees for 7-10 minutes until pale golden brown and toothpick comes out clean.
Remove from the oven, let sit for 2-3 minutes in the pan Turn over and cool on a cooling rack.
Repeat with remaining batter.
While cooling, make the topping.
Topping:
Melt the butter/alternative in a small bowl.
In another small bowl whisk together the cinnamon and sugar.
Take each cooled donut, dunk top half into melted butter and then into the cinnamon sugar mix. Place on cooling rack or tray to set, enjoy.
Store in an airtight container at room temperature for 2-3 days. I haven’t tried freezing them yet, they never make it that far.
NOTES: (1) Butter: Dairy & Corn Allergy – Depending on allergies use whatever butter you need. There are several options: MELT, Earth Balance, Miyoko’s, coconut oil, goat butter). Beware of salt in butter if corn allergic (look for sea salt/unsalted), also be careful of the diet of the cows. Many of vegan butters have corn derivatives. (2) Vegetable oil: Corn Allergy – Don’t use “vegetable oil” as it can be corn or soy oil. Canola oil is one of the worst oils for cross contamination with corn. I usually use grapeseed oil. Olive oil isn’t always 100% olive oil either, so if you are sensitive, be careful. (3) Brown Sugar: Corn Allergy – depending on sensitivity, you may need to make your own with safe molasses and sugar. Alternatives include coconut palm sugar. (4) Egg/Replacer: Corn allergy – Eggs are washed with a commercial cleaner that is full of corn products. The egg shells are porous and absorb the cleaner, so many with corn allergies have issues with eggs. Less common is to have issues with eggs due to what the chickens are eating. I have found that many of the egg replacers out there use corn starch, so beware which one you buy. Bob’s Red Mill works as a great replacer, however it has a lot of cross contamination and isn’t recommended at all with corn allergies. You could also use a flax egg as an alternative. (5) Vanilla: Corn Allergy – Vanilla is made with alcohol, often corn, you may need to make your own (6) Xanthan Gum: Corn Allergy – xanthan gum is iffy with corn allergies due to how they make it. We made the switch to psyllium husk fibre in our house. (7) Baking Powder: Corn & Grape Allergy – Baking powder is not corn free. Find corn-free if need be. Cream of tartar is made from grapes, if you have a grape allergy; you just need 1/4 of powder for baking soda and remainder in apple cider vinegar (8) Salt: Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive and require brand specific salt. (9) Coconut Milk: Cornallergy – ensure coconut milk is additive free (10) Grease: Corn & Soy Allergy – PAM is full of contaminated corn oils and soy oil. I use safe oil & grease with my hands or a silicone brush. You can buy oil mister bottles and fill with your own safe oil as well.
The last day in February is Rare Disease Day, a day to bring awareness to the general public about rare diseases affecting many people’s lives. What I didn’t know until we had V and researched Rare Disease Day, is that 1/20 people will live with a rare disease at some point in their life.
Despite how many are affected, most of these diseases actually have a small group affecting each specific disease, having no cure and most of the time actually go undiagnosed. We celebrate rare disease day on the last day in February, a month with a rare number of days.
So what is a rare disease?
“There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world, each supported by family, friends and a team of carers that make up the rare disease community. Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country. Rare diseases currently affect 3.5% – 5.9% of the worldwide population. 70% of those genetic rare diseases start in childhood. 72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.” (1)
What are the challenges with a rare disease?
Due to such a lack in scientific knowledge and quality information of each disease there are often delays in getting a correct diagnosis. The lack of information also delays appropriate interventions and treatment, causing additional burdens on those affected. Due to the rarity and diversity within each disease, it is so important for research done to be international so that all researchers, experts and clinicians are connected and able to collaborate more effectively and efficiently. There are several initiatives, including the International Rare Disease Consortium, the European Reference Network, Care 4 Rare (this is a Canadian run program), and EU Framework Programme for Research and Innovation Horizon 2020, that support international, collaborative work.
How will Rare Disease Day help make a difference?
Rare disease day helps to bring awareness to the 300 million people living with a rare disease around the world, and other loved ones affected as well.
“The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.”(1)
At the start of Rare Disease Day in 2008, 18 countries held events, and in 2019 over 100 countries brought awareness to rare diseases by holding events. This is exciting progress.
So how does this affect our family?
As mentioned in a previous post The terrors of being a NICU parent, our daughter was diagnosed with Incontinentia Pigmenti, a rare congenital condition that affects her X chromosomes. This in turn affects her skin, hair, teeth, microvasculature (including her eyes), and central nervous system. What I haven’t mentioned is that only 1200 people with this condition have been reported in scientific literature. Current prevalence being 0.6-2.1/1,000,000 persons, which is a 0.00006%-0.00021% of the population on earth. (2)
At 6 months of age V was also diagnosed with a rare allergy condition called FPIES (food protein induced enterocolitis syndrome). It is a non-IgE allergy affecting her gastrointestinal system. It causes vomiting to the risk of hypovolemic shock, abdominal pain, and bleeding with diarrhea. Most outgrow this condition by the age of 3, however a small number live with this allergy for life. From numbers I could find, FPIES is estimated to affect 0.28% of children in the United States currently. Due to frequent misdiagnosis this number is likely low. (3)
Living with a Rare Disease
Living with a rare disease has so many complicated facets. Not only is there little information out there, many doctors don’t know or understand the condition. I go to our family doctor and tell her what I want/need, not the other way around. She actually told me the last time I was in that I am the expert, not her. What is scary about this, is what if a doctor doesn’t agree with what my daughter needs? What if we go to the emergency room needing specific care and they don’t agree with what she needs and ignore our concerns? Things can go from scary to downright dangerous.
Support groups are our life. I have so many support groups, yes on facebook, but they have made our life so much simpler and safer. There is so much information each of us as parents have researched and discovered, so why not share? Obviously it is important to trust your source and do research as necessary to confirm what was stated or suggested, but I have learned so much about new updated protocols to follow, food suggestions and tips on dealing with IP and FPIES in the hospital setting. Due to all of this advice, we were safely able to navigate surgery for V this past January, you can read about it here. These support groups also are so important for ones mental health. It is easier to shelter yourself and your child when someone in your family is affected by a rare disease or allergy. It is easy to just stay home than to go out, risking your child, worrying about an innumerable amount of risks, trying to explain yourself and your child numerous times. It is so much simpler to shelter oneself. I have found support, people I can vent to, people that understand. It also makes it easier to go out because of advice given.
For many with a rare disease, or really any disease, life is more expensive. We celebrate daily that we live in Canada, where most of our medical expenses are covered by the health care system. Unfortunately this isn’t the case for many across the world. Sadly, our health care does not include FPIES or any allergies under a tax exemption for food expenses. Depending on severity of a condition, it can become very expensive to support the one in your life with said restriction. For us, corn is debilitating. Everything we eat needs to be locally sourced from specific farmers, with specific farming practices. This includes butchering practice and packaging of all food products. Suffice to say, it puts a strain on ones budget.
There are of course the struggles if ones family is not supportive and you have not only no help, but judgement too. Judgement as to treatment options, lifestyle changes, things they can do to help etc.
For many with a rare disease they are undergoing medical treatment that is new, joining medical trials, trying medication after medication. There is often no end to the disease and the start of ones day. So how do you live with a disease and not let it define your life? For everyone that looks so different.
For our family, it means trying to make meals as normal as possible, even if our ingredients are limited. It also means scheduling doctor appointments around our life, rather life around the doctor appointments. We bring food with us to go out instead of just staying home as we can’t eat out. Some struggles we haven’t come across yet, like how we will approach dangerous sports (increased risk for retinal detachment) or for V later in making decisions about having a family (as IP is hereditary and often causes miscarriages).
I encourage you all to read up about a loved ones disease, rare or not, and know how you can support them. Whether they are in need of financial support for programs, help with just staying on top of their house (due to an even busier schedule than most) or even just taking them out for coffee and listening. Trust me, when loved ones research and are able to participate in a conversation about the condition, bring forward suggestions or ideas and overall just are there, it means a lot!
Anyone been craving apple crumble lately? This recipe is so delicious! I have made it around 6 times… In the last 2 months lol. And I’m the only one who eats it in my house due to a stubborn husband who doesn’t like fruit. More for me!
Ingredients Apple Filling 2 lb Granny Smith Apples, weight before peeling 1 Tbsp white flour (I use my Gluten Free All Purpose Flour) 1/2 C cane sugar 2 Tbsp lemon juice or water 1/2 tsp ground cinnamon
Topping 1 C rolled oats 1 C white flour (I use my Gluten Free All Purpose Flour) 1/2 – 1 C brown sugar (loosely packed) (1) 1/2 tsp baking powder 1 tsp ground cinnamon 3/4 C unsalted butter, melted (2) Pinch of salt (3)
Directions 1. Preheat oven to 350F 2. Peel apples, cut into 16 slices each apple (I use my apple peeler, corer, slicer) 3. Mix the apple, flour, sugar and cinnamon in a bowl, then pour over the lemon juice. Toss. Spread out evenly into a 9×9 baking dish. If I have extra apple I put into a 3×5 mini baking dish and make a 1-2 serving for later (I freeze it) 4. Place topping ingredients in a bowl and mix until clumps form, like wet sand. Depending on how sweet you like it, change the amount of sugar you add. I like it with 1/2 C of sugar. Spread over apples, crumbling with fingers as required. 5. Bake 30-40 minutes or until golden brown. Remove, loosely cover with foil to keep warm. Let sit for 10 minutes before serving.
Notes (1) Corn Allergy – depending on sensitivity, you may need cane sugar. We use Cuisine Camino. (2) Dairy & Corn Allergy – Depending on allergies use whatever butter you need. There are several options: MELT, Earth Balance, Miyoko’s, coconut oil, goat butter). Beware of salt in butter if corn allergic (look for sea salt/unsalted). Many of vegan butter have corn derivatives. (3) Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive. We use Maison Orphee.
I hope you can enjoy this recipe as much as we do in our house. It has become a staple for visitors. Quick, easy and delicious.
I don’t know about you, but I am the type of person who needs to know the pros and cons, and all the potential side effects and worst case scenarios. It helps me to just feel prepared for anything.
This actually really seems to bother my husband sometimes as he feels I am dwelling on the worst case, fearing the worst for no reason. I don’t know how to fully explain it but for me, I’d rather be prepared for the worst and get to celebrate the best than be so unprepared that I didn’t see the situation coming.
So why am I sharing this? We drove this week to the BC Children’s Hospital to see several specialist involved in V’s care for her genetic condition. This involved meeting an ophthalmologist surgeon who performed surgery on Thursday. We also met with a neurologist to confirm sure isn’t having any neurological complications of her vision and had an EEG to confirm and a requisition for an MRI to get a baseline of her central nervous system.
We have 10 doctors who are involved in V’s medical care, most of which have been supportive and helpful. Most of our appointments have been the perfect example of a supportive medical team.
But that isn’t always the case. We are so blessed to have such an amazing team. This week, meeting the two new specialists, as well as everyone involved in her care in the hospital during her surgery, including anesthetists, medical residents, and nurses to name a few, was nerve wracking. What if they aren’t supportive in our struggle with her uncommon allergies, what if they won’t listen to our requests for specific meds, for the necessity in certain IV fluids, food etc.
For anyone that wants to know about corn allergies and what hospital treatment and care looks like check out the following links:
So how did we prepare for surgery for our little girl? For starters, we have a “care plan” for lack of a better word made up for her. This includes her daily routine (which is helpful if we have people watching her), emergency numbers, medical conditions, allergies, including her safe foods that she can eat and where we buy them, the emergency room protocol for corn allergies, what to do in case of an anaphylactic reaction or a FPIES reaction, and information on her genetic condition, IP.
We also brought copies of the protocol to give to the anaesthetist and doctors, including a list of safe and unsafe things for her. This included medications, IV fluids and other practices.
Obviously not everyone needs to have all of this if your kid doesn’t have allergies affected by hospital care. So what can everyone else do to prepare?
We always prepare before any appointments by writing down concerns we have, things we have questions about, and ask about potential complications with any procedure that needs to occur. We talk about in emergency situations what steps would be taken or how long a procedure would take and what recovery will look like.
Often times doctors have done a procedure so many times that they forget that us as parents or patients are worried or don’t fully understand exactly what they are going to do. Don’t be scared to stop them from leaving, ask more questions, ensure that you feel comfortable with everything that is going to happen.
One thing I haven’t mentioned yet is surgery start times and fasting. When your kid doesn’t understand why you aren’t giving them food when they keep asking for it, it is so difficult. Thank goodness V was able to be distracted by a walk, playing with toys in the waiting room, more walking, and watching a little TV. If that didn’t work, I don’t know how we would have made it so long. She was starved.
I always hoped and prayed that I wouldn’t have to experience the fear of walking away while my child was put to sleep with anaesthetic for a surgery. It is a scary thing. We talked about who would go in with V to hold her while they put the mask on and put her to sleep with the medication. That was a hard decision for me. Do I want to be there while she is terrified and then walk away with her unconcious?
So what do you do while you wait? Well I wanted to keep my mind busy, so we actually went and ate our packed lunch. We were a couple floors down and I knew they had our number. I needed to be distracted. Obviously not everyone can eat when their little one is in surgery, so what else can you do?
We packed a couple small card games to play and our books to read. And obviously we had our phones as well. V’s surgery was only 45 minutes, so we had no issue filling that time. Just do whatever you need to do. If you need to leave the ward or if you can’t leave just in case, those are both ok.
If you bawl your eyes out the whole time or never shed a tear, you are an amazing parent. It isn’t easy having your precious child in surgery, whether it is major surgery or something simple, it’s scary. Feel what you need to feel and don’t feel embarrassed.
Getting to see V after surgery was so heartening and heartbreaking. Be warned that it may take a while for them to feel ok, to settle in. It took V about 30 minutes to calm down and feel better. I’m going to be honest, I am so thankful we are still breastfeeding as it was such a simple, easy way to help her stay calm and feel safe.
So what am I trying to say with all of this? Maybe just that surgery is terrifying and it’s ok to be worried sick. Do your research, find all your answers before hand, and know that those doctors only want what is best for your little one.
Anyone else have a hankering for banana chocolate chip muffins lately? This is my go to breakfast/snack. I always have premade muffins in the freezer and several in a container on the counter at all times.
I love banana muffins as you can use up those older bananas that you don’t really feel like eating anymore. I usually throw them into the freezer until I have enough to make a double recipe.
Ingredients 4 ripe bananas, medium or 1 1/3 C mashed banana 1/3 C melted butter/vegan butter, cooled (I use miyokos) (1) 2/3 C cane sugar 1 egg/egg replacer 1 tsp vanilla (2) 1 tsp baking soda Pinch of sea salt (3) 1 1/2 C all purpose flour/GF flour (I use Gluten Free All Purpose Flour) 1 C chocolate chips (I use Cuisine Camino Semi-Sweet Chocolate Chips) (4)
Instructions 1. Preheat oven to 350 F 2. Grease your muffin tins (5) 3. Peel bananas and throw them in a big bowl with melted butter and smash it all together with a fork or potato masher 4. Blend until it is creamy and smooth with no chunks 5. Add sugar, egg, and vanilla and mix until just combined 6. Stir in sea salt and baking soda 7. Add flour and chocolate chips and mix until just combined. Do not overmix! 8. Divide into muffin tins & bake until toothpick pulls out cleanly, about 18-20 minutes.
Notes (1) Dairy & Corn Allergy – Depending on allergies use whatever butter you need. There are several options: MELT, Earth Balance, Miyoko’s, coconut oil, goat butter). Beware of salt in butter if corn allergic (look for sea salt/unsalted). Many of vegan butter have corn derivatives. (2) Corn Allergy – Vanilla is made with alcohol, often corn, you may need to make your own (3) Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive. (4) Corn Allergy – During the dutching process to create cocoa, it is treated with ph balancing agents, derived from corn. It is difficult to find safe cocoa or chocolate chips. A couple of corn lite options: Cuisine Camino, Equal Exchange. (5) Corn & Soy Allergy – PAM is full of contaminated corn oils and soy oil. I use safe oil & grease with my hands. You can buy oil mister bottles and fill with your own safe oil as well. I don’t line my muffin pans as it isn’t needed. They hold well on their own, and often they are too greasy to stick anyways.
I’m laying here, trying to relax because I have to get up tomorrow before 5 am for my first work shift since my little girl was born.
I spent the evening panicking. The house is a disaster. I had no food in the fridge for supper let alone meals for tomorrow for me, hubby and little V, as well as grandparents who will be watching her.
I’m worried about all of her allergies, what if she has a reaction and I’m not there, what if , what if, what if. All I can do is give all the information to those watching her and pray that they will watch her like I do. I seriously don’t know how allergy mom’s cope.
I’m still a breastfeeding mom, so what will pumping look like, especially as a nurse. Will I find time to pump? Will my co-workers be ok with me leaving the floor to pump? Will V take to the bottle ok? Will I start to hate pumping and quit breastfeeding because of it?
So many thoughts and issues arise when returning to work, especially after being off for a year! I’m utterly terrified to start a new job with new co-workers especially since it has been over a year!
I don’t feel ready to return to work. Will I ever?
It’s so easy to wallow in the guilt of returning to work. Am I making the right decision? Should I just stay home forever? Will I negatively be affecting my children by working? I have absolutely loved being a stay at home mom for the past year. I feel so blessed to live in Canada where this is an option, to stay home for 12 – 18 months after having a newborn.
For moms putting their littles in daycare, I can’t even imagine. For someone you may not know well to watch your kids day in and day out, feeling like you don’t get to see all these new changes that are happening. Wow. You are so strong to do what you need for your family!
We are blessed with me being a nurse and being able to have the option of just working casually, so V going into daycare just didn’t make sense for our family. What that does mean though is worrying about who will watch V, whether grandparents can come, or if J will stay home from work that day and “work from home” (not sure how effective he will be lol).
I keep trying to remind myself that it is like any other day that her grandparents have watched her. Like any other day. Like any other day. It’s on repeat in my head but it doesn’t seem to be getting any easier.
I keep reminding myself she will be safe, she is loved, she won’t remember all these days I didn’t see her at all due to 12 hour shifts. I keep reminding myself that it’s ok to miss her little arms around me, or to look at photos during the day and want to bawl. I keep telling myself it’ll get easier as time goes on.
It is ok to work, it is ok to have a life apart from your kids. Healthy even. I have been dreading/dreaming of the day I get to return to work, and have a purpose other than keeping my child alive and loved.
Is it going to be difficult, heck yes. Is it ok to bawl and miss them, 100%. Is it ok to look forwards to leaving the house, for adult interaction, totally. Is it ok to blame yourself or doubt your love for your kids because you are a working mom, absolutely not.
Whatever you have to do for your family, whether that means working casually, part time, full time. Whether you have family watching your kids or they have a nanny or are in day care. Just know, you are doing what you need to, in the now, to raise and protect them. Just continue to show your children how much you love them, and enjoy every moment you have together as a family.
That is what I am trying to do, live in the now. Will I cry tomorrow, an absolute guarantee. Will it be hard to not see my precious daughter, totally. Does it suck being a pumping mom, totally! But we do what we gotta do.
Don’t let that mom guilt bring you down. Revel in the moment with your family ❤️ that’s what I am doing.
Did you know that people can get PTSD due to allergic reactions?
Did you know that young kids with allergies often REFUSE to eat new foods for fear of an allergic reaction causing the to become picky eaters and at a risk for malnutrition?
So this post is for all those that have stood in the grocery store and sobbed because you can’t find anything for your family to eat that is safe.
For those that are stressed about money because your grocery bill skyrocketed since allergies were diagnosed.
For those that feel like you never leave the kitchen because you have to make everything from scratch to ensure it is safe for your family.
For those that stay at home instead of going out for dinner at a restaurant, because the thought of eating there or having your kid eat there and react makes you have a panic attack.
For those that stress every time their kid is playing anywhere that isn’t at home, wondering if someone ate something recently that your kid is allergic to…what did they touch? Will you be judged for wiping down everything in the area? What is too much? And then wondering if it might better to just stay home.
For those who decline invites to friends houses because you don’t know how well they clean and you don’t want to offend them by requesting they clean everything first.
For those who want to get frustrated with toddlers who aren’t eating in a high chair and are running/crawling around with their food; everything they are touching is now contaminated and a risk for your child or you. (Trust me I’ve been guilty of this too).
For those who try to act all cool in public but inside you are panicking about everything.
For those that carry an epi pen at all times because you never know when you might need it and the thought of being without causes you to break out in sweats.
For those who panic about trying new foods or starting new trials for ingredients, unsure what the reaction will be.
For those who constantly run through what to do for an anaphylactic response because you are worried you will miss something important.
For those that hear an ambulance and cringe inside, having flashbacks and reliving of previous reactions and the terror it causes.
For those that second guess everything, wondering if something could be related to an allergic reaction or if it’s in your head. Is that a rash, hives, a bug bite or a scrape?
For those that can’t go out in public without wearing an N99 mask because you are airborne reactive to many foods.
For those that are harassed at work or disrespected due to allergies meaning you no longer have a safe work environment.
For those who have to pay an arm and a leg to get medications compounded specially so that they are safe for you to take.
For those that are told that your baby can’t react to food through your breastmilk, to just eat whatever you want but your baby is in pain and screaming, so what else could it be.
To those who religiously check ingredients and stress about what’s in their food.
To those who have misread, or don’t reread a label and have such guilt for feeding their child something that could have killed them.
For those who have nightmares of accidentally killing their child by improperly checking ingredients.
For those that have family that doesn’t respect your boundaries you have put up to protect you or your family and put you at risk, causing you to feel unheard, alone and always in fear.
For those that don’t have a supportive spouse or significant other, to not have someone else looking out for you.
What many may not know or understand is how much allergies can affect ones mental health. I sure didn’t. I thought I understood as I discovered my allergies to gluten and dairy while in highschool and I thought it was the worst imaginable diagnosis.
I didn’t truly understand until my daughter was diagnosed at 3 months of age. I spent so many nights holding a screaming baby and bawling. I would go to the grocery store and sob over my empty shopping cart because my normal staples we couldn’t eat anymore and I had to start from scratch.
Allergies are debilitating. They can cause stress, anxiety, can break relationships, cause self doubt or fear, financial difficulty and everything that goes along with it.
For those on this journey, I am here, we all are. We understand. Find a support group of others with a similar allergy. Share your fears, share your tips or foods that you have discovered. Get medical help if you feel you have anxiety, depression, PTSD or any other mental health issues that are damaging to you, your family or is putting your health at risk. The treatment may look like medication, or it may not, but don’t be scared to get help.
To others, advocate for change, support your loved ones, try to learn about others allergies, what you can do to make it easier for them. Make a change in your office if a coworker is feeling unsafe due to their food allergies. Don’t wear strong perfumes or scents as it is disrespectful to others around you. Put out a teal pumpkin and have non food treats during Halloween. Don’t be offended if someone asks you to not eat something near them or to wash your hands after you eat, and if you do wash your hands, please wash them properly, not just tinkle them under some water.
All this to say that allergies are so incredibly complex and difficult. Let’s build each other up and create supportive environments for everyone.
If I missed anything or have a story to share, please comment. I would love to hear from you.
A Free Life 