Ellie’s Gut Rest and Allergies

Ellie is currently in a period of gut rest – again – and having to take a break from her treasured blueberries. This is heartbreaking for everyone.

Gut Rest – Again

I know I have mentioned gut rest for FPIES before several times. Also, how important it is for Ellie to be at her baseline when trialing foods, so we know if she is reacting or not (read all of her updates along the journey here). Well, we just couldn’t get her there while eating all of her blueberry options. Ellie’s wonderful allergist decided that with her continued symptoms, she needed to take at least 10 days to let her body have a break and see what baseline we can get her back to with just her formula.

We are hoping this period of gut rest will allow her to be able to sleep through the night again – because her stomach discomfort and pain doesn’t keep waking her up. I would be so grateful – for her AND me. We are both short on sleep.

 I tried to put Ellie’s pacifier into Rosie’s mouth the other morning. Whoops. My family thinks I’ve lost it. No, let me rephrase, they KNOW I’ve lost it.

Gut Rest – Extended

 This break has been lengthened since she had a few more nights of no sleep in the middle of this gut rest. We need to make sure she is completely at baseline before re-trialing anything.

Gut rest is HARD! Yes, Ellie has oral aversion, but she has made huge progress with her blueberries, and now she asks for them multiple times a day. I have to say no, and every time I do my heart aches, because I know she doesn’t understand why.

We have spent this period of gut rest offering ice chips and water, as well as her formula. Also offering many distractions when she asks to eat her powder, puree, crackers and ‘cwunchy boobewwies’. In addition, I have needed to take a lot of deep breaths during this time and prayed that this is what her body needs to be able to move forward. Because, at some point, we HAVE to be able to move forward. Please.

Allergies too!

That brings me to my next bit of an update for you. True allergies. I’m not talking about her FPIES reactions, I am talking about true IgE allergies.

She had previously tested positive for a peanut allergy through a skin prick test at her first allergist visit. Since she was also patch test positive for peanuts (indicative of a likely FPIES reaction) we didn’t test a blood level to determine the degree of her allergy. Instead, as a family, we avoided all peanuts and peanut products in the home in an attempt to prevent exposure to her. You can also read more about that in this earlier post. After learning that Ellie was needing to have other labs drawn, her allergist asked to add on a peanut allergy lab.

If you have been following along with us on this journey you know that Ellie’s GPS isn’t set on the easiest and most direct route. We seem to hit a lot of traffic jams, detours, toll bridges, and I am constantly hearing the “re-calculating” warning pinging in my head as we travel the road less taken. I say all of this to say, her labs were not the easiest to draw, of course, but wait, there’s more!

Allergy Labs

Fast-forward through our attempts at getting labs for Ellie and let’s just say one good thing came out of having to go back to complete her needed lab work after unsuccessful attempts and incorrectly run labs – her allergist was able to add on a dog dander allergy lab. This was based on a hunch I had after her suddenly having random hives being around dogs, although previously she never had problems. We love dogs in this house, so I was praying I was wrong.

Peanut allergy Results

We were able to get the results of the peanut allergy after a few days. Unfortunately, Ellie’s number is just high enough to put her in the ‘level 2’ allergic reaction. Bummer, so we continue with no peanuts for the time being in our home. Please go eat a peanut butter cookie for me!

Dog Dander Allergy Results

After our allergist’s office was able to FINALLY track down the dog danger allergy test (I’m pretty sure it has seen more states than I have in my life) we found out that yes, she is allergic now to dogs as well. Even more than peanuts.

Not only does this sweet spunky and hilarious girl have such huge dietary restrictions – her puppies have been taken away now too. Okay, not literally. Sadly, our family dog died before Ellie turned one, so we didn’t literally take a dog out of her arms. We did have plans to get another dog since we all are dog lovers – especially Ellie!

My mom sent the perfect text when I told her about yet another thing with Ellie. “We are going to have that girl a party one day with food and puppies!!!” I am now REALLY looking forward to ‘one day’ and the puppy and food celebration!

Allergy Implications

Unfortunately, this additional positive allergy result has more implications than just being a huge bummer for our dog loving family. If Ellie is having a true IgE allergic reaction to dogs, then when she is reacting, her body is more likely to have an FPIES reaction, either to a food being trialed or even to a safe food. This is similar to what I had mentioned before that her allergist warned us about “failure breeds more failure and success breeds more success.” Basically, the whole point of gut rest. To have her body be as calm (reactivity wise) as it can be, or at her baseline, so we can not only better evaluate passes and fails, but so her body isn’t already trying to react to something. It’s like poking the bear – you just don’t do it.

The end of gut rest

As I am writing this I am hoping and praying for a good night of sleep for Ellie. A couple more of those (as well as other symptoms and lack thereof) and I think we will be safe to finish her gut rest. Her allergist wants us to resume her blueberries back to the source of the blueberries that were originally successful. I have them ready to go, whenever she is! 

Until then, we will be trying to convince a two-year-old that ice and water are JUST as exciting as food. Avoiding all peanuts and peanut products – praise be for cashew butter and almond butter! And most unexpectedly, deep cleaning our home and sadly distancing ourselves from every sweet dog and friendly pup around.

One day we will be throwing the BIGGEST puppy party for Ellie with ALL the best foods, and yes, there WILL be peanut butter cookies *fingers crossed*!