The last six months in our food allergy home has been quite a whirlwind, both in a good way and in a I-am-so-freaking-confused-nothing-makes-sense-anymore kind of way. Although my EoE son, Carter, has been symptom-free for 1 1/2 years after reintroducing his potential food allergens (except for soy), I have been struggling tremendously with this concept that no symptoms does not always mean no EoE; that in order to know 100% for sure, you must re-scope. If you’ve been following Carter’s story, then you know how I came to this realization. And if you haven’t, then I suggest you read my post It Ain’t Over Til It’s Over. It’s a good one.
Since that moment when I started to doubt every single thing we have done for Carter for the last few years, I have been unable to turn my brain off. The unknowns have been haunting me and I’ve been stressing over what might be happening in his little esophagus. Because of this, we recently decided to have Carter re-scoped to finally know once and for all whether he is able to tolerate soy and/or to see if any of the other “allergens” we had reintroduced were causing issues. In November, we met with a GI doctor from Helen Devos Children’s Hospital of Grand Rapids, a different doctor than the one who had scoped him 3 years ago but still within the same department. At our consultation with this new GI, I requested a scope procedure following a soy trial.
As the doctor flipped through Carter’s medical chart with a confused expression on his face, I knew it was coming.
“Did you have a second scope performed on Carter? All I’m seeing is this one from 2016 that says his eosinophil count was only 6, and that doesn’t show that he has EoE.”
Here we go again.
“I realize that 6 eosinophils is not considered active EoE, BUT he had ALL of the EoE symptoms AND he was off of soy for 3 MONTHS prior to that scope, which could have totally skewed the results, AND the only way that his symptoms subsided was by treating him with Budesonide Slurry.”
So the doctor agreed to us doing a soy trial/endoscopy and had us give Carter 8 oz of soy milk each day for 30 days.
The day of the procedure I was SO nervous. And for good reason. If the scope showed EoE, then we could assume that soy was the culprit but there was still a chance that one of the other allergens we had previously introduced was causing it and we were back to square one. If the scope didn’t show EoE, then the entire last five years of my life would basically be a lie.
The second week of January, the results were in:
“Carter’s biopsies came back great. He only had a count of 1 eosinophil in the esophagus. The doctor thinks this may be caused by mild reflux. He does not have an issue with soy.”
My brain nearly exploded.
Are we really back to a reflux diagnosis??? There were no visible signs of reflux in either scope… he has never complained of reflux. How could he possibly have reflux? Are you telling me that as an infant he just had REFLUX??
I knew in my heart that I could not accept this diagnosis for the second time around. My son never had reflux. As a newborn he struggled to eat; he was super burpy and gassy, and he screamed during his feeds. Our allergist determined he had a mild IgE dairy allergy and when we switched him to soy formula, these symptoms disappeared. But THEN, after 2 1/2 months of eating soy formula, his EoE symptoms began. He started gagging and vomiting on solid foods, all the time. His overall food intake dramatically decreased to the point that he flat out refused to eat anything at all; he ended up in feeding therapy. His weight dropped 40% in just five months. At a year old when we started him on soy milk, he began waking, no not waking, SCREAMING in the night up to 11 times per night, for months and months on end. He was treated with the HIGHEST DOSE of PPI medication our pediatrician had ever seen in an infant for 1 1/2 years and it made NO DIFFERENCE. He was bad on the PPIs; he was bad off the PPIs.
Carter did not have reflux.
I contacted the pediatric allergist we had seen at the UofM Food Allergy Clinic back in August to get her opinion on the scope results. I asked her if she had ever found that people are able to tolerate different amounts of a trigger before it causes a relapse in EoE.
“This is great news! Those are very good questions and the jury is still out on some of them, especially the question about the amount.“
So then I did what I always do… I scoured the Internet and social media support groups for answers to my questions. Here’s what I found out:
- You must have an eosinophil count higher that 15 in the esophagus to diagnose active EoE.
- The eosinophil count in the esophagus is irrelevant. More than 0 eosinophils indicates an issue, active or not.
- A person will have EoE for life and trigger foods must be eliminated forever in order to achieve remission.
- A person may be able to tolerate small amounts of an allergen without triggering an EoE reaction at all.
- You can have no EoE symptoms present and a visually clean scope, but your biopsies can show insanely high numbers of eosinophils.
- You can have horrible EoE symptoms but your biopsies can come back with eosinophil counts of remission.
- Different areas of the esophagus can have different eosinophil counts.
So basically… every person is different, every biopsy is different and every doctor has a different opinion.
I had one final person I needed to talk to regarding these biopsy results… our local allergist, the man who fixed my child when he was at his worst… The only doctor who ever believed me or listened to what I had to say.
“The biopsy showed a count of 1 eosinophil in the esophagus. Dr. [Devos] says Carter has reflux. I just don’t understand. How could all of that have just been reflux?”
“Brianne, was Carter treated for reflux?”
“Yes, for over a year.”
“Right. And do you remember what happened? Did he get any better?”
“Not at all.”
“And what made him better?
“Food elimination and the Budesonide Slurry.”
“Right. Carter did not have reflux.”
Then I spewed out my list of questions.
“Is it possible that the 1 eosinophil in the biopsy could have been the start of an EoE reaction, and that if we continued to give him high amounts of soy each day, that count would continue to grow?
“Yes. Absolutely. There are many issues with biopsies as well. When a GI goes into a very bad-looking EoE esophagus they know exactly where to take that biopsy… from the worst area. But in a healthy-looking esophagus, they are taking a stab in the dark. They could take a biopsy and get 1 eosinophil, but just above it they could get a totally different number. There’s just no way to know.”
“So you have found that some people have to eat large amounts of their trigger foods before it causes a reaction? But smaller amounts are okay? So for Carter, 30 oz of soy formula per day for 2 1/2 months was enough to kickoff his EoE, but 8 oz of soy milk for 1 month wasn’t enough to really do anything?”
“Yes; it’s called dose dependency [or allergic thresholds]. And it’s different for everyone. You can be eating a food your whole life without any issues, but as you start to increase the amount [or dose], you can become allergic. What’s more, once you’ve removed that allergen from your diet and everything is back to normal, for some people it can take even MORE of that food the next time around to trigger a reaction.”
I was instantly reminded of one of my best friends who, ironically, was the first one to introduce me to EoE. She had been eating coconut and tree nuts in normal amounts her whole life without any issues. Then one day she got on this coconut oil kick… she was eating it constantly, rubbing it on her face, probably bathing in it too – just kidding! But seriously, that’s when her EoE started. Sure enough, she has an allergy to coconut and tree nuts. Just the other day she told me that she knew she had accidentally eaten tree nuts a few times since her diagnosis, and nothing seemed to happen. No EoE symptoms whatsoever.
“The last few months I have just felt like a total crazy person… everyone telling me that Carter may not have had EoE.”
“I can look you in the eye and tell you with 100% certainty that Carter has EoE. I will fight Dr. [Devos] to the end on that because I know it. The problem with some of these doctors is that they focus more on tests and procedures than on the patient as a whole. I was there. You were there, Brianne. He had every symptom, no matter what the tests say.”
He was right. I was there. I watched my little boy suffer for two years while I felt completely helpless. At a time when we should have been snuggling and playing and being silly and eating fun foods, we were instead crying and screaming and starving and dying inside. I spent every moment catering to Carter’s every need, while I practically ignored the needs of our older son Mason, not by choice but out of necessity. I watched my marriage crumbling before me, not from lack of love, but from the anger and fear and resentment and exhaustion that was building inside of us. Our family lost those two years. Carter lost those two years.
“I know I need to let this go. People have been telling me I need to let this go. It’s just really hard when I think back to the horror that he went through.”
Our allergist responded to me with the affirmation that I have been needing to hear for a long time.
“You will never let this go. As a parent you will worry and wonder for the rest of your life about Carter’s EoE. But I’m a bottom line kind of guy, and the bottom line is Carter is okay eating the minimal amount of soy that he has been eating. All that matters is what you have done for him… what we have done together. He is fine now.”
Cue mom tears.
I left that appointment feeling like an enormous weight of guilt, doubt and uncertainty had been lifted off of my shoulders. I felt as though I FINALLY had some clarity. I finally felt… at peace with EoE.
Yet I’m also a realist. I’m sure there will be many EoE moms who will read this and think that I am a total crazy person; some will argue with me and say that I don’t know what I’m talking about. No way could my son have EoE. I’m sure many doctors would completely disagree with our allergist and his diagnosis because there is no proof on paper and we don’t have “the count” to back it up.
But here’s my bottom line:
I don’t care what your doctor says. I don’t care what the Internet says. I don’t even care what the biopsy says.
My son has EoE. And he is rocking it.