Long post this time– making up for how busy we’ve been. Story deadlines, trips, dishes to do.
This week Ada saw her pediatric gastroenterologist for the first time in six months and her allergist for the first time in a year– both at Duke Raleigh Hospital. It’s nice to live in a state with medical research institutions an hour or so away.
We figured out Ada’s issues with gluten without them, but it is nice to have practitioners that see more special cases to balance your own research and observations about your kid’s health with.
Ada is now in the 50th percentile for weight, and the 50th percentile for height! That is huge for her. At her first Duke appointment she was 12 months old (she is 2.5 now) and was at the 7th percentile– she dropped to the 2nd a few months after that, when I was figuring out that she can’t handle cross contamination. It is fine to be small, but she also looked frail, with deep circles under eyes. I don’t like a baby’s health—especially a breastfed baby’s health—being questioned solely on the basis of a weight chart. Yet I had to admit that Ada was a special case. She didn’t drop in the third or fourth month, like many breastfed babies do but some doctor’s don’t realize, and bounce back up. She went 50, to 20, to 7, to 2, to 8—from birth to 18 months.
The doctors of course were very pleased with that growth, as were we. Glad to know I wasn’t imagining that my arms are getting more tired when she wants to be held at a store than they used to! She gained 4.4 pounds in six months.
I recounted the same basic story for her two different doctors. Her remaining symptoms involve throwing up every week or two, not going to the bathroom for 5-8 days at a time, and skin bumps that sound like keratosis pilaris that just cover her back and tummy that happen simultaneously with the other symptoms.
Essentially, I’ll spend a few weeks really focusing on her diet. Making sure she gets her fiber naturally with greens, her probiotics through homemade sauerkraut and other fermented veggies or store bought coconut-yogurt, and not eating out or trying anything new, at least. She’ll go every day and I’ll be very encouraged.
Then we’ll eat out—try something new—or feed her certain GF brands that seem to bug her. She’ll be doing well and I’ll think I’m overthinking her food issues.
For instance, she’d done well in June in regards to those symptoms. July 2 I think we ate out at a restaurant where the fried food was overly abundant and there must have been tiny crumbs around—it seemed there would be, at least.
She threw up that night, didn’t go for 9 days, and had bumps covering her back and tummy for at least a week. This pattern seems to repeat itself. I discussed with them how I’d introduced goat cheese and tofu and she had bumps after the soy and more constipation after the dairy, so we are still happily free of those things until we can trial it more clearly.
I was a little surprised at the gastroenterologist’s reaction. She said not to worry too much about the throwing up and that some kids just do that, and have tricky gag reflexes. Ada definitely has a tricky gag reflex, and I used to before I was gluten-free, but I know many people that say their gag reflex calms down when they discover a food intolerance.
She also said that some toddlers withhold and seemed to focus on that she’s gained weight and that that worry has subsided. She said we have been searching for a reason for her digestive issues for two years and never found one, so to not worry about cross contamination from wheat and her throwing up after restaurants.
It’s true that toddlers sometimes withhold, but I can’t escape the nagging memory that Azita used to withhold like crazy and stopped doing it about 3 weeks after we went gluten-free.
So, I do not really agree with her assessment. But I’ve tried to think about it detaching emotion, and I could see her point of view, perhaps. She has checked Ada out with an endoscopy, looking for villous atrophy, physical issues, enzyme secretions and eosophilinic esophagitis. It’s all healthy, and she’s gaining weight– so in her estimation, from what she can see every six months for 30 minutes, Ada is healthy and made many gains. But I wonder if it was her child throwing up all over the couch for unexplained reasons, randomly, every week or so, would she feel the same way? Maybe she would– she mentioned how her toddler eats only whole wheat bread and green beans– and we all know how I feel about picky eating as a sign of food intolerance!
Anyhow, that’s fine. That’s her opinion and I know she means it well. There is merit to the fact that Ada has made huge gains and exudes health in a way she did not when this doctor first met her.
About 30 minutes later the appointment with the allergist started, and I told the story about symptoms increasing when we eat out or go places again.
I thought he had been skeptical about Ada’s skin bumps being related to foods, but this time he didn’t seem quite as much. One thing I always like about him was that he is one of those doctors that make you feel like he really is listening to your individual story, and taking his time to speak with you. That really should be a given for any doctor, but isn’t often the case.
He seemed to really take the vomiting that often seriously. Sheesh—I shouldn’t have to think I’m nuts for thinking it’s odd that my kid throws up all the time! I mean, if a two-year-old knows how to speak about it and knows all the words to describe it, they do it too much!
He said no, it definitely is a symptom and is not normal.
Interesting, isn’t it? The way a doctor can make you question yourself or make you feel completely validated.
I actually said, “So am I just crazy? Or is it really possible that she could react to crumbs and smudges on doorknobs and tables?”
He said that it is plausible. I was questioning whether or not I should trial wheat with her to decide for once and for all if it really is an issue, and the appointment reminded me that I already know that.
“So symptoms are enough?” I’d asked.
He said yes. I think he was getting at that it’s about patterns. If she’d had a year with no issues, then, sure, trial it. But if she stopped throwing up the week we stopped eating wheat and she gets sick when we are uncharacteristically in places where it is, why trial?
He made an interested point about amounts. He said that tiny amounts do cause reactions. It might not be the exaggerated reaction— kids don’t go into shock from whiffing a peanut all that often—but that doesn’t mean there is NO reaction. The goal is no reactions, I think. But there is a wide range between no reactions and the worst reaction possible. I think his message was, it’s OK as a parent to tell people that she will react from trace amounts, but I don’t need to act like she will die from it—which Ada wouldn’t, b/c that isn’t her reaction anyway. But he must come into contact with really paranoid parents. I can see how they get that way, though.
He said, and I liked this part too because it’s what I’ve always felt, that we may never know the mechanism that causes Ada’s particular reactions.
She will probably not get a true celiac diagnosis because she isn’t eating gluten. She doesn’t seem react along IgE-mediated pathways, and other immunoglobulin pathways are less studied and less tested for, with some doctors regarding them less significant and some that give them more credence. One of the immunoglobulin is tested for with gluten, but again she isn’t eating it. Some people have ‘total Ig*’ tested for, but that still doesn’t tell you why or what your immune system is reacting to. [an immunoglobulin is a protein created by the immune system and they are named IgE, IgG, IgM and et cetera].
People also have different thresholds which trigger a reaction, another point that has been important to understand for our family. He said that one person’s intolerance might be because of small amounts of an enzyme (like lactose intolerance) and so they can tolerate a bit more or less than another person, specific to their body.
With Ada’s case, whatever the physiological reason for her reactions, there may be no threshold at all.
So to me, these ideas kind of make me not care about the first doctor’s assertion that “well we don’t even know if she is actually celiac.” Really, it doesn’t matter. Gluten intolerance isn’t less serious than celiac disease. Her allergist focuses on symptoms less than the fact we don’t know medically why she is how she is. I’m sure the other stuff is important to his assessments as well, but I like focusing on symptoms yet knowing the possible science behind it. It keeps the focus on the person who is suffering. Many points he made were things that I already knew, but it’s nice to hear some confirmation.
I have to be careful to stick to places that are safe for her to eat, and trying new things that *should* be safe still seems to get her into tummy trouble.