And we’re back to dairy free

So maybe I jinxed myself by saying that my son had graduated from MSPI.  Maybe we’re just moving onto the next phase of his body saying “Food and I are not friends.”   Whatever the reason, we are back to dairy free in our house.

We had another major downturn in Colin’s ability to eat over the winter. (I actually wrote a long post when I felt really defeated but didn’t publish it.)   Whereas last year Colin had severe esophageal spasms, this time it was mostly chronic, often debilitating nausea.  Colin lost interest in food, woke up in pain every night, became more upset about leaving the house and lost weight.  It was rough.

Five months, several doctors and a variety of hospital tests later, we still don’t have a clear diagnosis.  The most popular theory is that he has Eosinophilic Esophagitis.  It is basically allergy cells in the throat that shouldn’t be there.  There is no cure but there are some medication options to help manage it.    Two doctors said they’d bet this is what Colin has, but they think it won’t be caught/diagnosed until it does more damage to Colin’s throat.   The days he is in pain I get really mad that they can’t figure this out.  Thankfully he has good days and he is one tough kid.

Taking dairy back out of his diet has been helping somewhat with his esophageal pain and his nausea.   I’m glad I have the resources and experience under my belt to get back to living dairy free.   It has been a bit harder though, since Colin’s had a taste of the good stuff and isn’t super happy about removing things like his favorite waffles.   He’s figured out that staying off dairy helps him feel better so that’s more than half the battle.

So I’ll be posting more here as I’m back to reading every label and finding new recipes.

As always, feel free to share any dairy free or MSPI friendly food finds you love and keep fighting the good fight!

 

 

 

 

 

 

 

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MSPI Graduate!

So we are still battling Colin’s throat/swallowing issues, with no new information despite a barium swallow test recently, but I decided it was time to recognize/celebrate that Colin no longer appears to have any reactions to milk, soy or any other foods.

MSPI Recap:   Colin was diagnosed FPIES and MSPI between 6 weeks and 3 months old.   I stopped eating any dairy and soy while nursing and then went on to do an elminiation diet myself.   At age 1 Colin could only eat corn, wheat, apples, carrots and chicken safely.   He nursed until 18 months and I ate only his safe foods.  We supplemented with Neocate after he turned a year old while slowly trying to add safe foods. Dairy and chocolate were our last ones to conquer. Colin is almost 5 and although I never would have believed this day would come, he is now free to eat anything he wants.

My guess is that if you are reading is, your next question might be, “How did you go about trialing these big triggers?”

Well for every food Colin has had reactions to, we trialed it by starting with the smallest amount of food and usually baked into something.  So for milk, we tried breads with milk as a minor ingredient.  Then we tried muffins and pancakes since they had more milk in them.   Then we tried 1 spoonful of cow milk yogurt.  Then a week or two later a few spoonfulls of yogurt in a day.  Then we tried cheeses.   We let a week go by in-between these food samples since Colin’s reactions are usually 24-36 hours after ingestion.  After cheese we tried a few licks of a low fat ice milk ice cream before trying full fat dairy.   We were amazed that he kept passing all the trials!

For soy we tried soy lecithin and then soybean oil in baked products.  Then we tried packaged products with soy flour/soy protein ingredients which had really given him issues in the past.   After passing that test we tried to get him to eat something with soy sauce in it.  He took one tiny bite.   Colin doesn’t like any kind of soy sauce based things or Chinese food.   We can’t give him a lot to find out if he’s 100% clear of this intolerance, but since he can tolerate the soybean protein in other foods, I’m taking this one off our list of things to avoid.

The day Colin got to eat his first ice cream cone, I  had tears of happiness.  I wish I could show you how his face lit up when we said he could have a real ice cream cone.    It has been SUCH a long road.   There have been so many firsts for him in the last year.   His first macaroni and cheese with real dairy.  His first real Smore around a campfire.  His first cocoa with whipped cream on it at our favorite breakfast place.   His first pasta with cheese in it.  Our family was able to “Go out to ice cream” anywhere and Colin could choose anything he wanted.    It has been an exciting and liberating time for him and our family.

Although we could really eat/cook anything now, it is hard for my brain to get out of the non-dairy routine.   I still tend to cook without a lot of dairy and I forget I can make things now that I’ve avoided for so long.   But really that’s not a terrible thing either.  Dairy can add a lot of fat to our diet so sticking to real foods and less cheese is probably better for us! Also, since Colin isn’t used to the taste of cow milk, he often prefers his old dairy-free alternatives.   He won’t drink straight cow milk, use real butter or eat many cheeses.  He is drinking almond milk right now and still likes the Earth Balance butter alternatives.

Colin is a very picky eater.  I think part of it is being a four year old but also MSPI has made him wary of trying new things.  Right now he is only eating a few foods due to his swallowing issues.  So we’ve gained some ground and lost some ground but we are really happy that his food intolerances have subsided.   (The doctor doesn’t think Colin’s swallowing issue is related to food.  We’ve been unable to positively/negatively affect the swallowing issue with diet, so we don’t think food is to blame.)

So if you’ve read this whole thing I want to tell you not to lose hope.   I didn’t think this day would come, even a year ago.

I plan to continue this blog even though we’ve overcome MPSI.  I was desperate to find resources when Colin was first diagnosed and I hope others will find the story of our journey and lists of foods helpful.     As the food challenges are now changing with whatever is going on with Colin’s throat, I am still busy making foods that make his body happy.  I could call it this Busy Hands Happy Throats, but I’ll just leave it as is  🙂

Manischewitz Marble Cake

Just wanted to do a quick review while Colin is napping.  I made a box of the Manischewitz Marble Cake mix, just the regular variety, not the extra moist which contains carrageenan.  I just put the chocolate batter in one part so I could eat the non-chocolate side.  Oh my goodness! It is moist and delicious and tastes like cake!  (If you’ve been following my blog, you know finding dairy/soy free cake mix that tastes good is quite a challenge!)   It contains wheat and potato starch.  The whole list is here: http://www.manischewitz.com/assets/images/nut_Marble_Cake.jpg.  You just need eggs and water to make the batter.

This stuff is expensive.  $5 for a teeny tiny pan, but I still went out and bought 4 more boxes of it.  My hope is that I will be able use it for Colin’s birthday or other dessert laden holidays if potato is a success.  If nothing else, I will eat it. I’m debating trying to make it into tiny cupcakes to see if it works in cupcake form.

It is my understanding that like Easter candy, these box mixes are only around right now for Passover.  I would highly recommend checking them out before they are gone!

http://www.manischewitz.com/passovercakemixesandsweetsproducts.html – click on individual products to get ingredient lists!

-And I swear I’m not affiliated with Manischewitz in any way, just very excited to find something fast and easy that tastes like real cake!

 

 

 

 

Still Here!

Sorry I haven’t posted in so long.  The holidays were crazy and our house has had only a few germ free days since before Christmas.  We’ve the stomach flu, RSV, a vaccine reaction, stomach flu again and now an upper respitory virus.  Poor Colin has had it all, several overlapping. He hasn’t gained any weight since his 1 year appointment. 😦

I am working on a recipe to post soon, one of my favorites! So keep an eye out and hopefully we will be healthy here soon and I’ll have a little more time to sit at a computer!

 

Almost almonds

If you read my post about peanuts you know that early on we originally cut out all nuts from my diet over a hunch I had , but we really weren’t sure if all nuts were bad news.  Peanuts were a fail so I decided to try almonds.  If they were a pass I would try other nuts but if Colin had a reaction I would stop altogether with the nuts.

Although I was hoping for Colin’s sake that he could tolerate almonds, I had my own selfish reasons for choosing that nut to try next.  I really really wanted access to all the almond products on the market like almond milk, almond ice cream and almond butter.  I miss foods like ice cream and peanut butter soo much.  If I never had to look at peanut butter I probably wouldn’t miss it terribly, but Hannah enjoys it so it is out of the cupboard quite often.  Almond butter is a really close second to peanut butter and I would eat that in its place, no problem.  And ice cream.  Oh, ice cream.  I never ate that much of it before but I think it is the epitome of fatty delicious dairy so when I think about what dairy I’d like to eat, I long for ice cream. True, almond ice cream isn’t the same, but since I’m out of ideas for safe milk substitutes, I can’t even make my own right now.

For this food challenge I started with just a few raw almonds and upped the number I ate over several days before trying almond milk and a few days later,  almond butter.  At first I thought things were going well.  I didn’t see any major changes and Colin’s eczema was not too terrible.  I was able to make recipes needing milk substitute, like quiche, which was both exciting and delicious.  Late  last week though,  it dawned on my husband and I that Colin has been progressively spitting up more and more and his eczema starting looking a lot worse as the week went on.    I realized too that Colin was generally sleeping terribly and he hasn’t been smiling very much.  Poor little guy. Based on our history with other foods, I had been expecting a big obvious reaction if almonds were a problem.

About 3 or 4 days after removing all traces of almond from my diet Colin, reverted back to his happy talkative self and we all required much fewer wardrobe changes thanks to less spit-up.  So it is bye-bye nuts for probably a year or so.  I didn’t have time to get used to eating almonds so it is not terrible giving them up but oh, those few spoonfuls of almond butter were soooo good.