This is Lily

My daughter has FPIES. And for the last few months we have gone symptom free, for the most part. We avoided trigger foods and opened up to new recipes and were able to introduce home made and store bought paleo pizza, muffins, and crackers (all wheat, oat and rice free), to Lillian.

Today I sit here in my living room with a head ache. I feel like a failure, but I know we will find the answer soon.

Last month, my daughter started to have horrible diarrhea. It would come and go, I would go back to only feeding her eggs and toddler milk and it would clear up, and then we would feed her again and it would come back. We have a trigger food that we are having a horrible time identifying. It could be anything…

It’s been a month and her stools have still been off. She started to get blisters with her diaper rash. I tried a few different brands of butt paste and they just didn’t work. So we finally took her in to her doctor for an RX. We have a butt paste that is compounded now, and we are hoping to see improvement with it. (Insurance did not cover this, but we thankfully can afford the $65 price tag).

I feel overwhelmed…and I will tell you why.

The doctor and I had a talk about my daughter’s FPIES…and that we usually get vomiting with a reaction…not just diarrhea…

Celiac disease…

She was tested for it last year, but soon after, I found out from a friend that since we are on a gluten free diet anyways, the tests would be invalid.

This was brought up again yesterday at the doctor’s visit… retesting is not an option right now. My daughter is FPIES to Oats, Wheat, Rice, Pineapple and Broccoli. That means, if we wanted to test for Celiac we would have to introduce her to a gluten product, most likely wheat, which makes her vomit profusely and causes her to go limp.

I won’t put her through that.

Now kids CAN out grow FPIES, and her last reaction to wheat was January 2019. It was a reaction to licking a spoon, that was used to put DRY cream of wheat in a bowl. It had the DUST from the cream of wheat… not even a tsp. And she threw up for hours….

We are not scheduled for a food trial until January 2021. Her doctors felt that she was severe enough to wait until she was at least 3 years old.

So no test – no wheat – no testing for Celiac right now either. BUT….

Why do we think it might be celiac?

So lately I have been getting bold… instead of getting items that say “gluten free” I have been relying on the ingredients list. I thought, well… many people say they can have this item and they are FPIES to the same stuff we are ….

It has been since I introduced these items that we have started having issues…. the ingredients don’t say wheat but they could have contamination…

FPIES is vomiting – or bloody stools… usually. Not just Diarrhea…

Celiac includes the diarrhea and various other things as well – BUT both the GI and PCP said it was a possibility since we are very careful about exposure, that if these items had enough gluten to make her sick enough to just bother her tummy a bit – we may get this reaction.

The goal is – to only eat ‘certified gluten free’ foods.

Which is hard. For us.

My daughter has a rice allergy…. please look in your local gluten free section and tell me what percentage of foods my daughter can eat….

Not much…

So I have to go Gluten free – but ….with a Paleo twist…

It’s possible…we just have to be VERY picky.

My head hurts today.

I feel like everything I do doesn’t make a difference. I feel alone. And I feel like my family thinks I am the crazy mom.

I have good friends – and family but they don’t live this (with the exception of my friend Kerri, who also has a multitude of food allergies, I am thankful to have her to complain to). *Waves to Kerri*

I am looking for Paleo recipes that I can fit into my schedule – that I can make certified gluten free – so we can see if we can get rid of these tummy issues with my daughter. We are currently trying to rule out any other possible issues until we can get her tested for Celiac… but until then we have to live the life. As if she has Celiac.

To all the moms out there – or if you have celiac or other food allergies – let me know your struggles – let me know where you shop. What do you do?

I am also on another journey with my other child, Calvin. For personal health reasons we are trying to cut milk and soy out of his diet… and milk is not too hard to cut out but soy…. god help me SOY is in everything….

Living soy free – is nearly impossible. Unless you make everything yourself.

But here I am a home schooling mother of 1, toddler mom of 1 other, and I do still work from home PRN as a medical coder online. I am expected to keep the house neat, teach my children, take care of our pets, and be a loving wife. I suffer from migraines, severe depression, social anxiety and today I feel sad… I feel self pity. I just want to cry.

I know what we are going through is small compared to what others go through – but it’s my struggle. As a mother – it’s hard to see your child suffer while you try to figure out what is going on inside of them.

I have an amazing MIL and FIL who have been supportive of me – and I think them for that. They remind me that I am a good mom.

We still haven’t gotten an apology from my BIL/SIL for the horrible thing they said about my son (when they kicked him out of a group get together, see my older posts for that information). So their support is non existent right now. My own mother is very supportive. I wish more of my family lived closer.

Update on homeschooling: We found a program over a month ago that is working for US. It’s called Acellus Power House, Home school. It’s online. I also just bought my son a subscription to curiosity stream and he is loving it.

Sorry for the rant – I just feel overwhelmed today.

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