Who in the world would have thought I could pull off brownies for Gage at this stage of the game? Let me rephrase that, who in the world would have thought I could pull off brownies for Gage at this stage of the game and they taste wonderful?
I would like to give two huge thank you’s. First is to The Spunky Coconut for creating these wonderful little bites of chocolatey goodness. Second is to my good friend Rachel for finding the blog and recipe for me!
Gage helped to make these and he was so excited the entire time. I feel like our cooking and baking experiences together now will be different from most kids. Gage is getting the nitty gritty of from scratch baking. He’s going to understand how to throw together a cake like no other man will, that hasn’t been to pastry school anyways.
Let’s get started!
Whip with an electric mixer in medium bowl:
1/2 cup + 2 tbsp of warm water
1/8 tsp xanthan gum
Add to water and xanthan gum mixture:
1/2 tsp baking powder
1/2 tsp baking soda
3 tbsp coconut flour
1 cup sunbutter
1/4 tsp salt
1/3 cup honey
1/4 cup cocoa powder
Sprinkle with 1/4 cup dairy-free chocolate chips. I used Enjoy Life.
These last weeks have been hard. It’s staying hard because it’s in my face everyday when I prepare Gage’s meals, snacks and go to the grocery. He hasn’t yet adjusted to this last change as quickly as he has other diet changes because this one removed half of his daily food intake. All day I feel like I’m telling him “no, you can’t eat that”. It sucks. He has been begging me for brownies the last 3 days. I told him I would make them for him, but for the life of me I can’t find the recipe. Talking with Nathan tonight he reminded me it was Bob’s Red Mill mix. Too bad it has stuff in it now he can’t have. So tomorrow I have to let Gage know that we have to find a new recipe and cross our fingers it’s good.
So let’s try and smile instead of being sad about this. Life does seem to revolve around food but there are way many more memories that have nothing to do with food.
Okay – so this one involves food, but what a great memory. 🙂
I had the final phone call from our GI doctor today after her meeting with the dietician and allergist.
I’m going to really break this down so it may get wordy but by the end everyone should understand the true frustration of a person dealing with EoE.
Starting with the good news. The doctors have decided to let Gage continue to eat millet and sorghum. The average person might not get why that’s so important, but an allergy mom might completely understand. I bake everything for Gage using these two grains. He won’t get to eat them everyday, but a few times a week is fine. A huge weight has been lifted for me because of this.
Let’s get into it now. Gage’s blood test revealed quite a bit. The foods we tested in the blood test were the ones we were most curious about. Wheat and corn were zero on the skin prick test, they were sky high in the blood test. Potato, rice, oats, apple, and chicken were all sky high too. She actually said his potato score was the highest she had ever seen. His score on milk and shrimp were minimal. So where does that leave us, why can he eat millet and sorghum if he tested positive on the skin prick, why remove dairy if it’s not showing positive? This my friends is the fun of EoE.
Gage tests positive to many foods. A few of these foods are a true allergy. The rest, false positives yet could be effecting his esophagus. Dairy doesn’t test positive yet could be the whole reason why he is over reacting to everything. With EoE you have to find the triggers that are setting those eosinophils off releasing their toxins. If you don’t find the trigger the person just gets worse. Many times when a person is diagnosed with EoE the doctor will simply remove the top 8 allergens. There are tree nuts, peanuts, fish, shellfish, wheat, soy, dairy and eggs. Once removing these 8 a clear scope is the result. Through this whole process Gage has never been off of dairy. When he was first diagnosed he just over a year old. At that time he was drinking lactaid and off of all other dairy. His biopsy scores at that time were in the 20’s and less. By the time he was 2 he was back on milk. Since then his biopsies have gotten worse. Dairy has been the only top 8 he’s never been off of so that’s why we’re giving it a go.
So why is Gage allowed to still have millet and sorghum? The allergist believes that the only reason Gage showed a reaction was because we just used a flour and water mixture to make a paste and tested him with that in a skin prick. It was more of a skin irritant. The allergist thinks that if Gage was actually allergic to millet and sorghum we would see a reaction when he eats it. We don’t see any sign of a reaction and he eats them daily. So we’re allowing Gage to eat them making my world of finding things for him to eat SO MUCH EASIER! He thought if the other allergist had done the same test on Nathan or I we would have shown a reaction as well. So it wasn’t really a false positive but it just irritated him.
So why do we still keep him off of the other foods he’s tested positive to but haven’t seen a reaction when he eats them. Well, it’s not worth the risk. He has tested positive to them with the skin prick and blood test, it’s just hard to tell. We have always messed around with what grains he’s eating thinking its a grain that’s a trigger. The GI doctor, along with myself, just have a gut feeling it is dairy causing all these problems. If this is the case then once we get his biopsy score back to zero all the grains testing positive in his allergy tests may go back to zero as well. Everything that he doesn’t have a true allergy to should go back to zero such as celery, mustard and apple.
We believe that if Gage didn’t have EoE he would truly be allergic to eggs, beef, soy, pea and all nuts. He has actually had reactions to these foods. He does react to a few other foods but we believe it is only because he is so flared up. Eggs and nuts are anaphylactic for him. He’s never actually had beef but gets hives when he eats deer meat. He’s had a mild anaphylactic reaction to soy and instantly breaks out in hives when he eats peas. So even though he is truly allergic to these foods they are probably not a trigger in his esophagus. So you have true allergies then you have EoE allergies. There’s no way to test your esophagus directly to figure out what the trigger is. Something researchers are working on, I pray.
So as long as we don’t have Gage’s trigger figured out his body is just attacking more and more foods. I could feed Gage wheat, corn and rice and I wouldn’t see a reaction. However, those eosinophils would be going crazy in his esophagus. His esophagus becomes more and more inflamed. Clusters of eosinophils gathering and causing fibrosis, hardening of the esophagus. Then finally the risk of his esophagus stricturing shut. Imagine if you will your little one asking you over and over for a piece of the “good bread”, regular bread. You know that he can eat it just fine and have no outward reaction, yet you don’t really know for sure if its what is causing damage inside. What’s one slice going to hurt? For one day I would love to feed Gage whatever he wanted. One day. I know he’s a carb man and would probably eat and entire loaf of bread and a sleeve of crackers. Hopefully dairy is his trigger and by next year this time he will be able to eat those things.
I hope this was informative as to why this disease is beyond frustrating and why Gage can and can’t eat certain foods. It’s just not a cut and dry disease. You can make a rough draft outline of a plan of treatment, but you’ll go through 50 rough drafts before you can actually get anywhere.
To review – from the new testing we are removing dairy, apple and chicken. I still have a few grains and can bake him his bread, pizza crust, pancakes and donuts. We are also allowed to give him coconut milk as a dairy substitute. Since removing chicken we are also allowed to give him pork a few times a week. The next scope is scheduled for 6 weeks from now. If there is some improvement then we stay on the diet he is on and will scope again a few months later. If there is no improvement then he will go on a feeding tube. Stop back for those results and say a big prayer for Gage and his little body to heal.
Air Mattress $60
My boys having a movie night while camping in the toy room allergy free
No one said going camping means you have to be miserable and face your outdoor allergens. Bring it inside. Make smores in the microwave and rent a movie. My boys thought it was awesome!
Now, if I could only talk them into taking down the tent. 🙂
Keep on LIVING!
We met with the GI doctor. sigh We’ve come to the conclusion Gage is just a very allergic kid. Since we haven’t found his trigger his body is just overreacting to everything he seems to eat a lot of. That is why he’s showing an allergy now to millet, sorghum and chicken. Gage is also still growing. He recently had another growth spurt and is on the upper side of the growth scale. The combo of those two facts have put us face to face with two choices.
1. We give his diet one more change removing the newly positive foods PLUS dairy.
2. We go ahead and put in a feeding tube.
We have the best GI doctor. She asked me if we wanted to make the decision or if we couldn’t she would do it for us. I expressed that Nathan and I had spoken all week about what we wanted to do with Gage. We knew in the back of our minds what was coming but we never said it to each other. We only spoke about the choices we would make in changing his diet. So I let the doctor know we wanted to give it one more go around before calling it quits. I can’t in my heart just do the tube if I feel like I can try one more change. I have to know I’ve done everything I can for him. Gage’s esophagus is at a point where we start risking him stricturing shut. So our game plan is to change his diet and scope again in 6 weeks. He won’t be completely healed by then but we will be able to tell if there’s improvement at that time. If there is no improvement then it’s time to put the feeding tube in.
So Gage’s new list of do not eat foods are:
beef – along with anything containing gelatin
coconut – tested low but we’ll use it sparingly for baking. I don’t think I would risk letting him drink it daily and his body starting to highly reject it
apple is in the blood test and possibly may get taken out
We are still waiting on the final word from the GI doctor for the blood test we had done. Chicken was a low positive and we didn’t skin prick for rice or oats so those were in the blood test as well. I highly doubt we can add rice in but it would be a huge help.
We’ve made it through the weekend ok. It’s going to be a tough 6 weeks, but hopefully worth it. The big thing in our house is the boys have hot cocoa every morning. It’s basically milk with hershey’s syrup or carnation instant breakfast warmed up in the microwave. They drink it religiously like I drink coffee. So we had a talk why he can’t have it. He told Charlie immediately that it wasn’t fair for him to drink it if he didn’t get to. So I’m now on a panicked search to find him some hot cocoa. There isn’t really a replacement milk we can use. Coconut, occasionally with risk. Goat’s milk we don’t want to risk since he’s so allergic to beef and broke out in hives when he ate deer. We would really have to test him on something like hemp before giving it to him. Charlie and I had a talk and Charlie told me right away he would go hide in the basement to drink his hot cocoa. I laughed a little. He won’t give it up, but he’ll figure out how he can still have it and make everyone happy. So for the last two days he’s drank it in the bathroom.
I attempted pancakes for Gage Sunday morning. By noon I had “donuts” ready. Lot’s of tears and ruined batches of goo but I came out with a winner and they both at them right up! Phew! Keep an eye out for the “I’m allergic to everything donuts”.
I have noticed in just a short 36 hours of being off of dairy that the dark circles that are always around Gage’s eyes are gone. I do hope it correlates to what’s going on inside as well!
Enough bad news let’s all smile, it’s Friday.
Charlie has a new smile! He lost his first tooth this week at school during lunch.
Who wants to guess what he was eating when it came out?
He couldn’t have been more proud of himself. He kept telling me now he has a hole in his smile.
That boy warms my heart. If you ever meet him, give him 10 minutes to talk and he’ll warm your heart too.
Something funny he also recently asked about was his football fundraiser. This sparked MANY ideas in his engaging brain. Mom, can families raise money for fun things they want to do? We are saving for Hawaii (in the far future) so maybe we can ask people to give us fun money for our trip. Oh Charlie, if it were only that easy. He thought it was fun-raiser instead of fundraiser. He really thought the idea of going door to door was easy enough. Why wouldn’t people give us money for our trip? I love innocence.
Any guesses on the food he was eating?
It was a Vienna sausage! So gross, but he loves and can eat the chicken ones.
Since testing yesterday and we aren’t meeting with the GI doctor to work on our plan until Friday, I don’t know what to feed Gage! Obviously I take away what he’s newly testing allergic to. Which, unfortunatly is what he eats everyday. However there are things he tested allergic to in the past that he didn’t test allergic to now so is it ok to feed him those foods? He doesn’t have a reaction when he does eat them. I’m in a food limbo and poor Gage is hungry.
I also wish I would have had him tested on apples. Maybe we’ll throw that into the blood test.
A few thoughts to leave you with.
1. Did you know if you have a severe beef allergic like Gage then you can’t eat gelatin. I just learned this yesterday. He’s always had a beef allergy but it’s really bad now and the allergist brought up gelatin. Gelatin is a protein substance derived from collagen, a natural protein present in the tendons, ligaments, and tissues of mammals. It is produced by boiling the connective tissues, bones and skins of animals, usually cows and pigs. Gelatin’s ability to form strong, transparent gels and flexible films that are easily digested, soluble in hot water, and capable of forming a positive binding action have made it a valuable commodity in food processing, pharmaceuticals, photography, and paper production.
Jello and marshmellows are two kid friendly foods that contain gelatin.
2. Did you know you can have exercise induced anaphylaxis? Those people are typically allergic to celery.
Gage was recently scoped. We knew ahead of time it wasn’t going to be good. We were having troubles getting him to eat. He was “gunky” in his throat a lot while he ate. He even complained of potatoes in his ears when he ate. There were even a few occurrences of him having a reaction to his dinner when it was made from scratch, 100% safe, and he shouldn’t have been reacting to any of it.
Doing this scope with out his side-kick, Charlie, I could tell Gage was nervous by himself. He was a trooper though. No tears, no whining, he did as he was asked and made it easy on everyone. I think me staying calm helps him to stay calm. I always use distraction techniques too. Talking about the positive of why we do it. A treat he might get to have after we’re done. Things like that. They wheeled him away in a wagon in his giggly loopy state of mind. Forty five minutes later I met the GI doctor in a tiny room. Gage’s esophagus is covered in white. I think it’s probably candida but it could be eosinophil abscesses. There is fibrosis and linear furrowing. He is inflamed. His stomach and small intestine do look good though.
It’s like you know it’s bad, but you don’t really want to hear how bad.
So I gather my thoughts while I wait on the biopsy results. Well he’s off of everything he’s ever tested positive to. The one thing he hasn’t tested positive too but most kids with EoE respond to the removal of is dairy. Okay, so we’ll remove dairy. We’ll also have a skin prick test done on all foods to see where he is on those since it’s been a while since he had them tested.
That Friday the GI nurse calls. The doctor would like a meeting with you. Strange, she’ll usually call me herself. Gage doesn’t have candida, he has eosinophil abscesses. His entire esophagus is covered in clusters of white blood cells. His counts are about the same as they were in December staying at 50+ in the mid and lower esophagus. ugh. I inform the nurse we’re getting the skin prick test done the following week and we can meet with the GI doctor Friday.
That brings us to today. We had the skin prick testing done. I hate it. He hates it. I somehow manage to talk Nathan into going with us. (YAY!) We talk with the allergist then the nurse comes in with the tray. I don’t see any caterpillars. She says she wants to do it on his arms. I see a big needle. My heart starts racing and I panic. She assures me if he doesn’t take well to this way then we’ll do it on his back. He holds his little arms out as she instructs and she gets busy. He replies “that didn’t hurt” over and over. Phew. Towards the end a few were starting to hurt and he was itching before she was even done. I had taken in millet flour, sorghum flour, coconut flour and xanthan gum to test these since he eats these all the time. I could instantly see these spots getting red. The nurse even commented on them. I lost it. I had to leave the room. I let the tears flow a minute then sucked it up and headed back in. Nathan of course jumped on me to suck it up and not make it worse for Gage. I knew that. I blew on his little arms to help with the itching and watched the welts grow. The allergist came in before the time was even up and just shook his head. Thanks doctor. So he started marking things down. We quickly realized they didn’t have a test for potato on his arm and the nurse was sent to find some. We got that on there. Thank goodness we did. The results of this test are so frustrating.
Old test are things that were positive and he is not eating. New test are the things that were positive along with new foods. They didn’t have a few of the foods so I have NA listed on the new test.
Old test New test
rice NA – doing blood test
peanuts/tree nuts peanuts/tree nuts
peas NA – but in the nut legume/nut family
oats NA – doing blood test
He’s never tested positive to dairy and still is not. The last 3 are listed in the new column are things that are in his everyday diet. So it’s no wonder he’s such a mess. However, the foods wheat, corn and dairy are typically taken out of an EoE kids diet even if they don’t test positive to them to help them get clear. I took those things out and replaced them with what he’s now allergic to. He’s still not testing positive to dairy so why should I take it out? Or should I because so many kids clear up once it’s removed. You would think just removing what he’s having an issue with and putting the other foods he’s zero on now would be the solution. I hope the GI doctor see’s it that way on Friday. We are doing a blood test on milk, wheat, chicken, potato, corn, shrimp, rice and oats. His shellfish was screwy. Shrimp was very positive but nothing else was. That’s not common. So it’s either a false positive or false negatives on the lobster, crab and clam. Who knows. He told us we really need to stay away from beef as it is very high, along with egg, peanuts and soy.
Not the cut and dry answer I was hoping for but at least there’s some changes we can make.
Friday’s appointment can’t get here soon enough.
When talking with Gage about what kind of birthday he wanted he knew right off the top of his head he wanted a catfish birthday. ??? Um, okay.
We traveled home to be with our family for his birthday and for a fun adventure for Nathan and I. (A later post) So I had to come up with some sort of catfish cake to feed everyone. Once we had the birthday invitation list made up I knew I didn’t have enough of Gage’s special cake mix for everyone. So I focused on Gage’s cake being just for him and made regular cupcakes for everyone else. Now, a catfish cake. Where do I even begin? I did some internet searches and found that people have made catfish cakes before. The one thing I never use is fondant so that always causes some issues on how fancy I can make the cake. I finally found a catfish cake I could sort of build from and I went at it. The body wasn’t to hard to figure out once I got going. The icing, that was tricky. I knew he was expecting it to really look like a catfish. To color it that way was too hard. So I started with a grey color and stuck with it.
I thought it wasn’t too bad. Gage thought it was awesome. The cupcakes were the same color as the fish and we put gummy fish and worms on them.
One of the big things about Gage’s party was the food. At first I had said we were only having cake. After much pressure mom let me know we needed to feed everyone lunch. I finally gave in, but only agreed to feed everyone what Gage could eat. So our menu was hot dogs, chips, raw veggies and cheese cubes. Anyone who wanted a bun could have one.
I also made him a very special 4 t-shirt!
The other big thing Gage wanted was a pinata. So a fish pinata he had.
It was a great day and everyone was happy to have his birthday safe for him. It’s wonderful having such a big supportive family.
Happy birthday Gage!
Where did the summer go? Oh, that’s right we spent a lot of it inside because we couldn’t take the 100+ degree heat.
Where did my blog go? Sitting right here waiting on me. So I’m back. Back in the swing of school, routine and getting things in order.
We had quite the exciting summer. Every week it was something new.
So I’m back to share our summer adventures and how we LIVED it!
I’ll try and weave in the summer with our current day status and what’s going on.
What’s in store for this week? Gage’s birthday he had this summer and what’s going on this week with his eosinophilic esophagitis. It’s going to be a really hard week with him this week. We just had a bad scope.
So stay tuned for the update!
It’s nice to see you again!