“It doesn’t matter how I answer that question. No one can really ever know, and you can’t go back. You can only move forward. She’s healthy and happy. With proper attention to her diabetes, along with correct management of celiac, she can live a long, fulfilled life. Nothing I say will ever take that away.” Dr. Alessio Fasano
I nodded my head and looked down at my hands. I tried to smile, but felt the familiar clutch in my chest, and swallowed hard to fight back tears. Aside from one or two people, the room was almost empty now. I looked up again, and thanked him for taking a few minutes to talk to me. He smiled, and I moved out of the way so the next person could have their turn.
When Celiac entered our world in 2008, I began searching high and low for as much information as I could find. Along the way, I consistently came across the name of one prominent researcher: Dr. Alessio Fasano. For YEARS, I’ve kept up with the events happening inside the gluten-free (GF) community; and for years, I’ve valued his position on issues ranging from obtaining a confirmed Celiac diagnosis to using 20 ppm as the standard for a U.S. gluten-free labeling law.
So, when I learned that he would be presenting a session at the 2012 Children With Diabetes Friends For Life Conference, I could hardly contain my anticipation. If I only had the opportunity to ask him one question, I already knew what it would be:
Had I known to eliminate gluten when she first began showing signs of celiac, could I have stopped the autoimmune process that ultimately led to the destruction of her pancreatic beta cells ?
And, while I wanted to hear a definitive yes or no, I’ve come to learn that nothing in life is ever definitive. There are no do-overs. You learn as you go, and do the best you can along the way. So, I suppose that, if a top-notch celiac researcher tells me not to look back, but instead to keep moving forward…then…ONWARD we must go! He’s right. The “yes or no” answer I keep seeking is of little relevance to the life we’re living.
His session was incredible. I was completely absorbed by the information he was presenting, and couldn’t seem to take notes fast enough. Here’s a list of a few things I remember:
- First of all, I’m not exactly sure where or how I thought the immune system functioned, but I was stunned by the HUGE role the intestines play through a process commonly known as “leaky gut“. When combined with an environmental trigger and genetic susceptibility, leaky gut sets the stage for a Celiac diagnosis.
- Just published in March 2012, THIS study demonstrates that delaying gluten exposure until after 12 months of age can reduce the immune response to gluten. All of my girls were exclusively breastfed for the 1st six months of their lives, and introduced to solid foods in the form of pureed fruits and veggies after that. Their first gluten exposure was in the form of pick-up cereals and “puffs”, along with teething biscuits around 7 months of age. If I could go back (and I realize I can’t), I would NEVER have introduced gluten before the age of 12 months. I wish I had known then what I know now.
- Type 1 Diabetes and Celiac Disease share many genetic variants, while others are distinct — read more HERE. Of note, I wanted to share this statement…
Our results support further evaluation of the hypothesis that cereal and gluten consumption might be an environmental factor in type 1 diabetes, leading to the alteration of the function of the gut immune system and its relationship with the pancreatic immune system.
Could that be the “yes or no” I’m looking for? Onward.
- Finally, something I found incredibly intriguing is that cesarean delivery is associated with Celiac Disease. It has something to do with the initial bacteria introduced into the gut…operating rooms are sterile environments…you’ll have to read the rest, because I can’t explain it as well as the study itself. Anyway, none of my girls were born via cesarean.
When asked if he, himself, avoids gluten, Dr. Fasano gave a little chuckle. “I’m Italian. Avoiding gluten would be quite difficult to say the least!” He responded that he eats gluten in moderation, and he believes it’s a good guideline for everyone to follow. Isn’t that what we hear for everything? “All things in moderation.” For some reason, the idea of eating bagels for breakfast, sandwiches for lunch, pasta at dinner, and cookies or crackers for snacks in between seems “normal” in the American diet…but, the truth is, it’s too much!
There’s so much more! If you EVER have an opportunity to hear Dr. Fasano, I would highly recommend his session!
In closing, I wanted to share that both Tink and Tiara had endoscopies three days after we returned from the conference.
They’ve both been symptomatic for awhile, so I requested some bloodwork from our pediatrician. The labs were negative, with the exception that they’re both positive for the DQ8 genetic marker (which means they’re genetically pre-disposed to the risk of developing Celiac).
As I’ve explained before, Sugar’s celiac screenings were negative for YEARS, despite obvious symptoms. With this in mind, we proceeded with a GI consult, who agreed that an endoscopy was an appropriate next step.
Last week, we got the call that both girl’s biopsies were negative for Celiac Disease. The recommendation by both our local GI doctor and Dr. Fasano (because I had a second chance to pick his brain at the conference!) is to have them tested again if their symptoms worsen. Otherwise, they should be re-screened prior to puberty, because untreated Celiac during that critical time can lead to a host of problems.
And so, it brings us full circle to that “yes or no” question.
Do we eliminate gluten for both girls in hopes of preventing further autoimmune disorders, including another T1 diagnosis? Or have the cards already been played since they were both introduced to gluten prior to 12 months of age, and they both have confirmed genetic susceptibility.
Do I impose a LIFELONG expensive dietary restriction without any evidence to support the reason? Is that something they would really appreciate later in life? Or, would it be an example of their mother making a reactive decision based on their older sister’s experience?
It’s hard to know what to do…if one/both of them were to ever develop T1, and we don’t eliminate gluten, the guilt would be overwhelming. At the same time, the idea of forcing a GF diet feels like it could potentially impose a lifelong burden. And what if we do eliminate gluten, but they decide not to continue being GF as an adult of their own free will…could that cause a worse autoimmune response later? So much still unknown.
This is when I choose to rest the burden and pray that God’s plan will be honored, no matter what. I will pray for an obvious answer, and keep pressing ONWARD in moderation for the time being.
Onward. Thank you for sharing the journey.