The Oregon Corrigans: Celiac Disease

Well, here is the post I've been wanting to write the most for our last few months. I've been wanting to document, and not forget the amazing details of this miraculous journey we are one with Marin's Celiac Disease. First let me say, that the first week after initial results, words I would NOT have used are "amazing" or "miraculous". But perspectives, and as you will hear, there is so much to be thankful for. I plan to write an entire novel, so feel free to skim (this is for my family yearbook, it's Marin's amazing story!)

Back in early November, Marin had a bout of the stomach flu. This is not even a blip on our family radar, I mean we have four kids, someone always has the stomach flu. In fact this week alone, as I type this, I have already had 3 out of 4 kids home from school at least one day for a stomach virus. WORD. But back to Marin, after a few days of recovery, she got it again. That's weird, doesn't that usually have like an immunity or something protecting you from getting the same thing so close together? Anyway, back home sick for another couple days. Back to feeling better, but then several days later SHE GETS IT A THIRD TIME. Mommy instinct gets a little dulled sometimes in the hustle and bustle of managing a big and busy household, I admit. But something clicked in my brain, knowing that something was off here.

I took Marin into our amazing pediatrician, someone who (as a total side note, is still recovering from stage 4 breast cancer mind you, and yet has been serving her patients tirelessly pretty much the entire time. She is a saint, has become a dear friend, and one of the most compassionate doctors I've ever known). She checked Marin out, discussed all the various tummy bugs that could maybe explain three close together illnesses like this in a 4 week period. I mean, the child had missed SO MANY days of school by this point so this is just not okay. I just said "Something is not right, I can't figure out what but something is not right". She said "I believe you". Can you EVEN UNDERSTAND what a gift it is to have a relationship with your doctor that has such trust and respect between parent and doctor. She's known us a long time, and has a policy of "three strikes you're out", meaning if a patient have three unexplained things in a short period of time, we move forward with deeper testing. So she ordered a slew of blood panels, trying to rule out mono, or a number of other random things. There was really no specific thing she was suspecting, so it's a lot of guesswork.

I get a call from her on her cell phone Friday night at 8pm. "You will not believe what came back postive in Marin's bloodwork. Lisa... she has Celiac Disease"... WHAT?!? I know what Celiac is, barely... Then she goes on to say, it was literally a last minute decision to throw in the Celiac test. She was sure it was going to be negative, Marin had no history or signs of this, it was just a last minute throw in. She tells me how sorry she is, she gives me the number of a specialist and we hang up. I sit in shock for a long time.

(Another side note... I meet with 4 other women regularly to pray together, it is one of the most enriching and powerful experiences I've ever had in my spiritual life. We pray for our own issues, our husbands, our children, the internal & personal & important stuff, this is what we pray about)... The day before Marin's bloodwork I told these women about Marin, and that something was nagging at me, I couldn't figure it out but I knew something was not right. These women prayed SPECIFICALLY for wisdom for our doctor, and for the truth to be brought to the light)

So there, I feel like it's a plain and simple MIRACLE that this was uncovered. Conventional wisdom would have not led us here.

And a few more details that continued to prove to me that God was orchestrating so many things to take care of my girl.
1. I called the GI doctor we were referred to. The receptionist says the next available appointment is in 3 months. I tell her we have to be seen sooner. She tells me everyone's child matters and hangs up on me. I cried. Twenty minutes later same woman calls me back somewhat haughtily and says "well, someone just cancelled for tomorrow so you can come then". I jump at the chance, because THIS IS A MIRACLE. Then I realize (a) it's in the middle of the school day and who will take my other kids when school lets out (b) a freaking snowstorm is expected that very day, within an hour of our appointment time downtown. I just feel the immense sense of peace. My gracious mother-in-law agrees to come to my house with her overnight bag, to be here for the other kids (just in case she gets snowed in).

2. Marin and I make our way to the doctor, he explains Celiac in depth to us, and that she will need a biopsy to confirm. Blood tests just screen, but biopsies confirm what is happening in your body. Typically biopsies are scheduled out a long time in advance too, I've been warned. OH WAIT, he says! Look at that! There is suddenly an opening two days after Christmas. Let's grab it, he says. What a surprise, he says.

I'm like, TOTALLY starting to see a pattern here :)

3. We leave the doctor, and the snow is coming down hard now. My phone app says traffic is literally at a standstill on the freeways, because it's a Friday at 2pm and a snowstorm is coming. Everyone is getting out of the city (it's Portland, things are dicey here in the snow). It will take me hours and hours to get home on the freeway. Maybe we'll sleep in my car on the freeway, it will take so long. So I decide to take BACK ROADS home to my house. In hindsight, this was the most incredibly terrible decision of my entire life. Back roads are steep and windy, back roads have no shoulder, back roads have ravines on both sides of the lane, back roads are more isolated, back roads are terrible things to do in the snow in a mini-van. Also, my battery died on my cell phone with no charger.. Marin and I are driving home, and basically had the most scary couple hours of my entire life. Several times I had was stuck with no way to turn around, my car would not budge, and I felt that distinct cross-over from "I'm worried" to "I'm panicking". We are praying feverishly and out loud like some kind of Foursquare baby. At one point, I actually started CRYING and almost hyperventilating and Marin looked at me and decided to tell me a story. She told me when Peter saw Jesus walking on water, and walked out to join him. As soon as he took his eyes of Jesus, he started to sink. Marin says "Oh Mom, you have to keep your eyes on Jesus right now, He is going to take care of us". SLAP. Have you ever had something good snap you out of something bad? Well it felt like the slap heard around the world, but in a good way ;) I could continue to detail the entire drive home, turn by turn (it's etched in my brain!!) but I'll sum it up by saying, we MIRACULOUSLY made it home and God got us there. Marin was the coolest customer you ever did see, and I learned a lot from her that day. We made it home on angel's wings.

4. Fast forward to biopsy day. Strangely, starting around that blood test time, she recovered from her "stomach flu" and never got it again. We were required to eat normally so the biopsy would show what it needed to. So the child ate gluten straight to high heaven, and never felt ill again. We will never know for sure, but it's possible that her strange flu-like symptoms had nothing to do with Celiac Disease. It was for SURE the catalyst to my doctor digging into her health more closely, but what I'm saying is WE COULD HAVE MISSED THIS DIAGNOSIS FOR YEARS AND YEARS. She went under anesthesia at the children's hospital, and the doc could confirm visually that yes she had Celiac. Later that week, biopsy results confirmed it once again.

5. So... we are instructed to immediately switch her to a gluten free diet, including protecting her from hidden sources of gluten and cross contamination in the cooking/kitchen/handling process. We have an appointment for a registered dietitian specializing in Celiac (which happens later this month). In the meantime, I start reaching out for resources and find several great online groups that are helping me speed forward on this steep learning curve.

6. The week after biopsy, I go to Winco with all the kids (because, neverending snow days... ) and our favorite checker Olivear (she made Marcus his name badge you might remember) sees us and asks how we are. I tell her briefly about the Celiac thing, because she can see we are trying all these gluten free products. She proceeds to tell me about her daughter, who during her 2nd year of college almost DIED because she became so sick, they could not figure it out. She got down to 85 lbs, and were about the start her on chemotherapy because they were sure she had cancer. Then a friend suggested an auto-immune doctor, and LO AND BEHOLD she does not have cancer, she has un-diagnosed Celiac that had been slowly killing her for years. ARE you kidding me??!! Olivear told me they were actually to the point of looking into funeral arrangements and making plans for her daughter's end of life wishes, I mean... an 85 lb college girl slowly wasting away. What in the actual heck. Once they properly diagnosed her and changed her diet, she came back to full health and is to this day a healthy and happy adult.

I'm like... Thank you Jesus for giving me the perfect reason to be PRAISING YOU for this diagnosis rather than saying WOE IS US. I have not been able to shake the immense feeling of gratitude and joy that God was watching out for Marin, and helped us uncover this at the time we did. We are making great progress, and there is still a lot to learn.

Marin has been from the start, and continues to be, her own best advocate. If you try and convince her she can have a little something, or it's not that serious, or more commonly just not understand why she needs to be so strict with her diet, she will delight you with a list of things that could happen to her if she does not adhere to this gluten free lifestyle. She will tell you about how this is an auto-immune disease (not just a way to avoid digestive upset) and if she lets this poison in her body, she is likely to get lymphoma, and as a girl she is likely to have major reproductive issues as she gets older. She will tell you straight up "I can't eat that. If I do I could get cancer and not be able to have babies". (She was listening closely when the GI doctor explained all of this).

She was also listening when he told her that if she is strict about her diet, she will live a full, happy, healthy life as if her body was functioning normally. So that is where we are at, we plan to not live in fear, not hide out or rest in a place of self pity. We daily thank God we found it now when she at a perfect age to learn how to live.

We also allow ourselves bad days where it really stinks having Celiac, where she has to miss out on horse camp with her BFF - because even though this overnight camp has a gluten free food plan, they can't properly protect a Celiac from cross contamination. Where she can't partake at school parties, has to sometimes correct a well-meaning adult about what has gluten, has to leave the effortless food life behind, and embrace one of more intentionality and caution. She must always be paying attention, and make life decisions based on what the food options are.

She is up for this challenge, and so are we :) Pray for us, we are always discovering something new to learn.There are often new emotions. Some of them are hard. Disappointment is inevitable when she has to miss out on things (especially, we are learning, overnight experiences).

All in all - BLESSED to have resources, support, a supportive school and church, even legal protections (did you know Celiac is protected under the Americans with Disabilities Act?), understanding friends & family who will do anything to support us. Amazing.

Thank you Jesus.