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Archive for the ‘food allergies’ Category

I’m always grateful that my child doesn’t have anaphylactic, “true” food allergies (true only means that they are not IgE food allergies that provoke anaphylactic shock, not that they are not really serious in other ways).

I’ve always been grateful for that for many reasons. A slip up doesn’t have the potential to end her life quickly. I don’t have to learn about how to use an epi-pen. I’ve never felt the panic that a parent must feel when their child is in the same room as a particular, harmless-to-everyone-else-around food. I’ve never seen her lips turn red and swell. I’ve never endured a night while she tries to sleep covered in itchy hives.

Perhaps now I’m even more grateful for that fact after the place where my child is supposed to be kept safe suddenly had a breakdown in the system.

A breakdown so simple it’s aggravating. At the beginning of the school year, when I filled out my first-grader’s student health form along with parents across the country, I wrote in the section about food allergies that she cannot have dairy, artificial colors or wheat. I met with the teacher. I discussed sending her safe treats.
Last year, kindergarten, I never had an issue.

But then the past few weeks my child had been acting different. We are all the way in March… just one quarter left to the school year. She went from getting “greens” for her behavior every day to getting yellows and reds. She went from getting all 7 of her spelling words correct at the end of the week to getting 2 out of 7 correct.
She came home, unwilling to eat, emotionally fragile all the time—one night clutching her stomach and going to bed around 6:30. She missed 4 or 5 days of school in a 3 week period.

Then we got a call from the school telling us we owed a cafeteria balance, because our daughter had been eating breakfast at school for the past two weeks.

We both noticed something was off with her. We both wondered… am I giving her too much sugar? Chocolate? Not getting her to bed on time? Not spending enough time with her after the recent baby was born?

Nope. She’d simply been eating all three of the things that screw her body all up. Artificials being the worst. Dairy next. And wheat being tolerable in small amounts when she is otherwise healthy, but a bad idea when she isn’t.
She figured out, just being outgoing and curious as she always is— that if she goes to the cafeteria on her way to class in the morning she gets given a second breakfast. The teacher doesn’t know she’s there and the cafeteria seemed unaware of the fact that she can’t eat there. And they were most definitely supposed to know.

We both felt a little in shock as she listed the things she’d been eating. More than enough to make her sick, make her unable to concentrate on her school work and cranky and tummy-achy at home. First I went to her teacher.
She felt awful. The look on her face when I explained the change in her behavior let me know she did.
“Maybe I should have called you when she came in with breakfast,” she’d said.

Well, yes, she should have. She didn’t connect the dots about her not being able to eat lunch carrying over into unsafe food at breakfast. Yet, I’m not really upset at her. I hate my kid being sick being an example or anything, but I’m willing to bet it was a learning experience for this teacher that might be helpful to a mom and child in the future.

That’s not even the major breakdown in the system. Maybe that’s why I’m not that perturbed with her. One teacher can only do so much when she has 20 other kids to look after. So one kid comes in after breakfast that has some food allergies—she isn’t going to automatically realize and that sucks but I get it.

It was *really* affirming to me that I am doing the right thing with my kid’s diet when a person who knows probably next to nothing about food intolerance says “That explains so much!” If the teacher saw the difference in her too, well, that makes me feel good about how I feed her.

After the teacher, I had to go and speak with the cafeteria manager and front office. That was the real breakdown.
Apparently, my child’s student health form was never sent to the cafeteria. Her name was never added to the manager’s binder. Her intolerances were never added to her name when they pulled it up and rang up the food that makes her sick.

I’m not sure whose job that is. Was it the teacher’s? Was it the front office’s job when they got the student health form and it had food allergies listed?

I mean, really, whose fault would this be if a kid went into shock? Now– if she had that type of allergy the school would probably have an epi-pen and this mistake probably wouldn’t have happened. But probably is way too large a margin for the child that you nurture and spend your life loving and raising. What if the epi-pen stayed with the teacher, and the child, like mine, bopped on into the cafeteria in the morning before class officially started?
The system to keep her healthy and safe broke down along the way in that the cafeteria never got the forms I filled out.

The cafeteria manager took me seriously, apologized a few times, entered her allergies right on the spot, and then asked me to pay the $6 for the food my kid ate. The front office ladies seemed much less concerned. I will probably write a letter about this to the principal.

What’s unfortunate is that the food she was fed is not good food for *any* human. It has no place in a building that’s sole purpose is to foster the development of the next generation of minds that will shape our world. I have no doubt my kid is not the only one that can’t focus and has tummy aches after eating Trix and Cocoa pebbles.

What’s done is done and my kid is still recovering from the effects of two weeks of bad eating. She gets a near addictive response. She’s stolen candy at the store—snuck candy at two other houses and tried to hide it—fed her little sister something with gluten that she snuck (so now I have *two* sick children).

I think a lot of parents think that if they give their kid just a “little” of the junk—in “moderation”—then they won’t pine for it. But in actuality, for many of us, it just makes us want it more. There are biological reasons for that— that I’m not going to write about now. But I hope this saga is over. And I hope my kid gets back to herself quickly.

Not only for her, but for us as parents. Her behavior is really hard to cope with. Why on earth parents thing it’s harder to eat free of artificial stuff and anything else their kid is allergic/intolerant than to deal with regular colds, tummy aches and tantrums is truly beyond my comprehension. And it’s not like I’m a good cook. I’m not. I’ve just figured out fast ways to always make homemade food and keep us healthy. It’s just easier that way.

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I’m going to try to start blogging a bit more again. I started this blog around this time of the year when I was pregnant with Ada, so maybe it’s fitting if I write a bit more again at this time of year when I am pregnant with our third. He will be born sometime around 4-6 weeks before our second, in November instead of December.

I feel like motherhood has been a collection of joining new clubs, so to speak. First you are pregnant or with a young child, and you can kind of automatically have a new sentence or two to speak with other moms you see in a check out line. It took me about a year to realize that socializing with other moms was something I needed more than at random moments (I was in college and knew NO other mothers for a while).

So I joined the pregnancy club. Then the I-want-a-natural-birth club and had a doula. Then the breastfeeding club. The cloth diapering club. The babywearing club. Then with my second, I was even more bowled over to join the food allergy/intolerance club. And here I am again, realizing that I’ve joined a whole new club that I never saw coming. It just feels *different* having a third. Going from a four person family to a five person family just feels like you are graduating up to that next level of familyhood again. We had to get a bigger car– we will have a baby at the same time as a first grader. I have two kids at completely different stages of development… whereas when I had a 2 year old and a baby and a small car it didn’t seem that different going from one to two. And at restaurants the four person table would do just fine.

But now I’ll have three. I guess I’ll also join the I-have-a-boy club. Which I don’t believe, at this point, will be *nearly* as different as people want me to believe, but sure it’s still different. In respect to birth/babyhood, the decision to circumcise or not is probably the most different thing, but people already want to impose so many personality traits, assigned by gender, on the kid even though he isn’t even born yet. But our girls play with tools, love robots and have clothes that are not pink, so I’m not that convinced that it will be “a totally different world” as everyone wants me to believe.

Things have been different for me personally, the third time around, something I never knew to expect. As a third pregnancy, apparently— my body has enlightened me and all my mother friends and midwives have confirmed— you feel every single stretch and loosening and pregnancy symptom (related to getting bigger at least) quite a bit more. Oh, I feel *everything*. I have one strip of ab muscle that has hurt from 2-3 months pregnant… before I was showing at all. I get contractions all the time. I get the cervical pains all the time. The midwives say that the body simply has a harder time each pregnancy getting those ab muscles to stretch and the ligaments to loosen. I also have worse pains after birth as the uterus clamps back down to look forward to. I do remember it was quite a bit worse with Ada, each time she’d nurse I get cramps, and that is supposed to happen more so the third time.

It’s all worth it of course, but like all those other clubs, expecting a third kid introduced me to differences I’d never considered.

Some things this time around have been better. I’ve gained weight easier, been able to control the ridiculous heartburn easier through diet changes (knowledge afforded me by being in the food intolerance club and learning to understand how food affects me better— kids teach us so much!), no longer have low iron (probably from being gluten-free). I wish I could say the morning sickness was different but I was still sick for months, and months, and months. Having a boy didn’t seem to help that.

I’ve been in labor twice and it’s daunting to think of the third time around. But I tell myself it will happen, I can’t stop it, and soon it will be three years later and all this pregnancy/labor pain will be a memory and he’ll be talking and playing.

Some things I had thought I’d do the third time around I didn’t. I thought I’d have a homebirth if I ever had a third. I moved from hospital with the first to birth center with the second, and figured homebirth would be the next way I’d go. Part of me still mourns the thought that I won’t do it that way, however, we had some solid logical reasoning. The birth center I go to and trust is about a hour and a half away, in Chapel Hill, NC. The midwives are backed up by Chapel Hill’s hospital— so much better, more mother/baby friendly and respected than the hospital here in Fayetteville, NC. The thought of going back to the hospital here if there was a true emergency during a planned homebirth (as small of a chance as that is) was just decidedly *not* appealing to me or my husband.

I hope to make it in time to have a water birth this time, as with my second I made it to the birth center and had about 20 minutes before I gave birth.

My hopes for the third birth…. a water birth, another short labor– not so short I don’t make the drive up there, but not agonizingly long either!– and another good recovery, in the first four weeks postpartum. I’ve been blessed thus far. I get weekly chiropractic adjustments, which help with positioning the baby so he isn’t breech and keeping the mother’s labor short, with the other two I did yoga… this time I should be… and I stay as active and on my feet as I can. After the birth I breastfeed, which helps the mother’s uterus tone back down and I’ll do that again as well.

My hopes for the third baby…. oh, I don’t know, maybe he’ll pop out and sleep all night and not be colicky since I’m already gluten-free? Totally unlike the second? Well, at least I know the knowledge I gained with her may help us out!

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Part 1 – What to do about the food?

Back during Azita’s “holiday party” at Christmas time I always meant to make a post about the difficulty of every celebration involving food for a mom of a kid with food intolerances. I volunteered to bring the cupcakes, which I thankfully legally can since I have a kitchen certified by the state and sell my products at a local store. Remembering from my own parties at school, I guess I thought it would be some physical activity and one treat or two and maybe a movie, so bringing the cupcakes would pretty well ensure that Azita mostly got the same experiance as the other kids.

I was floored when I got there. The cupcakes were hardly even noticed. Pizza, candy, snacks, junky-type “juice”. It was a buffet of gluten, dairy and artificial flavors. One mom brought oranges, which remained unopened.

Oy, what would have been wrong with some cupcakes and orange slices? It was a junk-foody, decadent party even for adults. Even more frustrating was the fact that the teacher called me at 6 pm the night before to tell me she’d be bringing pizza– so that necessitated a trip to the health food store to get Daiya cheese and to make a crust, right at dinnertime and just before bedtime. Super convenient for us.

True, we could have just not sent pizza for her and let her sit there while everyone ate there hyperactivity-inducing treats, but that’s just not how I roll. I want my kid to relish the fact that she eats in a way that will nourish her body. At this point, while she is 5, I think that includes making sure she doesn’t feel left out. As she ages, I think there will be times that she just don’t have what others have and is okay with that.

Fast forward a few months, and I get a letter home from the school asking to bring eggs filled with non-chocolate candy for the egg hunt at school.

It specifically details store-bought wrapped candy. Yet another school-related activity where we are giving our kids the message that it has to revolve around food. I wasn’t going to send artificial food for anyone’s child, and so I sent eggs with organic Vitamin C drop from yummy earth, and a bag for Azita to trade the candy she gets in her eggs, and she was very cooperative and happy with that plan.

It just strikes me though, the way candy is specifically asked for. There are dozens are spring celebrations that could revolve around activities and art and play, not sugar. There are dozens of spring celebrations that could revolve around spring itself, and not a secular activity tied to a religion not every child shares, but that is for part 2.

What struck me, really, was that I went to a egg hunt for a playgroup I’m a part of. The organizer had suggested stickers and toys be in the eggs as well.

Out of 8 moms or so that brought eggs, I think only two brought candy (and I was one of them, but only because I had all the Vitamin C drops and have had way too much morning sickness for any extra store trips for stickers– though that was my original plan).

The eggs had bracelets, plastic bugs (Ada’s favorite), dinosaurs… and the kids loved it. It *didn’t* revolved around artificial junk in any way shape or form. Why can’t schools be like that?

I know change only happens if someone raises their voice and asks for it, but I’m feeling pretty unlistened to by the public school system at the moment. With the rise of food allergies, these schools need to get on the ball. Seriously.

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Ada is undergoing her second surgery—or second time being put under general anesthesia today, about one month after the turned three. She has officially surpassed the number of times Payman or I have had a surgery.
The first time she was 22 months old and we only decided to do the dental surgery route because she needed that and an endoscopy might be telling about the situation of her distraught little tummy. She wasn’t eating gluten at the time, though she was most definitely reacting to cross contamination at the time, and she did not have any gut damage, or esophagus damage either.
On the teeth side of things, she ended up with four crowns on her molars, three pulpotomies (root canals) with resin filling over top and one tooth with resin filling but no pulpotomy.
Since that day, 14 months ago, Ada has broken two of her resin fillings (it seems they just broke off—there was no noticeable injury and erupted four more molars. Her canines have decently deep cavities that have been scraped away (and I swear her tooth just crumbles) at least twice.
I remember going back for an appointment last September and the dentist said it looked liked we were keeping them very clean. We brush and wipe them with a cloth, but admittedly, it is very difficult to floss her.
Then we went back in November and all that was out the window. Her teeth were getting worse and worse looking, and she had food in stuck in them… a huge chunk of something she ate for breakfast, which the dentist insisted was there from the night before. We do not agree. I just don’t think its possible I missed a chuck of food *that* size.
Anyhow, the dentist’s unyielding opinion is that we don’t brush her teeth well enough and that is the problem. She repeats over and over—though *I* no longer bring it up, that there are no enamel defects in her teeth and they are extremely rare. I could add, though I’ve stopped, that they are not rare among the special population of those with celiac disease.
This morning, as we prepped for surgery, she told us that she wants to be “aggressive” with her treatment—which I actually agree with b/c I don’t want to be here a third time and have resigned myself to the fact that she has metals in her body—and do as many crowns as we need, after she takes x-rays and determines how bad the decay is.
But she always takes it one step too far, and Payman sometimes thinks I’m being too sensitive and sometimes agrees with how I feel.
Minutes before I have to sign a paper that says I understand the risks of anesthesia—including brain damage and death—she says we must be aggressive because she isn’t convinced that Payman and I will be able to keep her teeth clean enough to keep this from happening again.
Thanks, lady, really. I am risking my child’s life and putting her body through something because I’m just not able to brush as well as everybody else.
Okay. Maybe I’m touchy, but damn. She also said that Ada’s teeth have been dirty every time we’ve ever come in, so could we possibly “really” commit to the flossing this time? Payman makes the valid point that, as a doctor, if she *truly* believes this is all our fault, she has an obligation to drive home that point for Ada’s benefit.
It’s annoying that her memory of how dirty Ada’s teeth are at *each* visit and my memory of being told how I’m doing a good job at least once are different.
So an hour into the surgery she calls us in the waiting room, as we knew she would. Goods news—the decay in the newest molars is not as bad as suspected! She tells Payman, but not me, that she doesn’t understand, after reviewing Ada’s records, how the molars have the decay they do. I swear, that’s all I’ve ever wanted anyone to say. *&^%
I guess she saw less decay than expected from the x-rays and must have reviewed her notes from each visit, notes that *should* show that her molars at least have been decently clean at most visits. I freakin’ scrub the hell out of them. But I am bad at flossing—apparently my largest downfall as a mother of a gluten-intolerance child. (I made a joke the other day that bad teeth is just another way gluten says “F You” to people).
Not that gluten has anything to do with it according to the dentist, who has never studied gastroenterology or celiac disease.
So back to the point. Sorry for the bitter tone and language of this post. I’m a little raw at the moment .
These molars are less than a year old, and coupled with Ada’s records, the dentist admitted she doesn’t understand why they are decaying the way they are.
However, good news is she is now suggesting no metal crowns on the molars! Just resin fillings, and maybe very close visits so that tiny cavities can be filled with resin without totally traumatizing Ada each dental visit. And, “Can you agree to really devote yourself to the flossing?” Yes, God woman. I’ll force her more than I do now. She does admit that she understands why it’s hard for us to do it—b/c Ada protests so much. She cries through brushing as it is.
She is losing all four front teeth, and getting crowns on the two canines. Those top four caused most of the problems… they have the root canals and the decay… they probably breed the bad bacteria. She’ll have a toothless little grin until she’s eight at least, but what else can we do?

Dental work feels drastic to me as a reason to put your child under. But with all of Payman’s dental work the past year, even as an adult, he is developing a deep-seated dread of dental work, and we don’t want to do that to her.
Okay—rant over! A few more hours and I’ll see my swollen lipped little angel!

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Navigating someone else’s kitchen is always hard. I searched for 10 minutes for the right pan.

But then I stood face to face with how hard it is to navigate someone else’s kitchen and make food that is gluten and dairy free.

It amazes me still that people think we are the ones with the restricted diets… in the midst of eliminating culprits, sure it can be more limited, but once one has it narrowed down– even to gluten/wheat, dairy soy and eggs– the diet tends to be more expansive. Sounds odd, right?

But Lord have Mercy… I was hard pressed to find anything that didn’t have dairy or gluten in a stocked-to-the-brim fridge and freezer.

It *shouldn’t* be this hard, and making food in my own kitchen is decidedly NOT hard. This is *not* a post about how hard eating gluten or dairy free is. Just a rant really.

I go to find some seasonings. The spice blend states it may be contaminated with traces of wheat. Out.

The salt has dextrose (corn sugar) in it. Not wheat, but it’s out for me still. I take a philosophical objection to corn being added to just about damn near everything, and it’s more likely cross contaminated with something we don’t eat that way, anyway.

Fresh lemon juice and olive oil on the chicken then (heaven help you if you were vegan in this particular house!). How I wish the olive oil wasn’t stored under the cabinet jammed on top of cleaning chemicals.

Now I need a new pan. I found some frozen veggies that aren’t organic, but I can’t be snobby at this point.

Superb. I find a pan and the cabinet and pans have bread crumbs from the counter in them. Need to wash that. Now throw on my chemical sensitivities and aversion to perfumed cleaning products. The dish cloths all smell of fabric softener, which has some pretty well documented health worries, and gives me a freaking headache. So, a rinse with water and a non-recycled paper product? That will have to do.

Then I think about the chicken we will eat. And the news story this morning from a poultry plant in a neighboring county where turkeys were being stomped on and kicked. I can’t feel good about eating something that has been abused, even if I did ascribe to the philosophy that we are the stronger animals and can eat animals as humans without guilt, and I do not entirely.

I could not find a fresh vegetable in this particular kitchen. The entire fridge was filled with gluten and dairy and meats… but the meats also had gluten or dairy, or at least preservatives and additives that I don’t eat or give my kiddos.

I know this post sounds like food snobbery, and thank God, truly truly thank a Creator or Providence or just good luck that I live here and not it the majority of the world where people know true hunger or competition for clean food.

But really… why is it so hard to find real food in a random American kitchen? The food I did find that is food allergy or celiac disease suitable is factory-farmed, unwholesomely treated meat. I remember an Iron Chef special… way before Iron Chef America on Food Network, where the Japanese Iron Chef’s went into an American person’s home and made them dinner as a surprise. One Chef commented that he couldn’t find anything fresh to work with. Just jars of condiments and prepared stuff with junk in it. Maybe the chemical smells are making me cranky, but it sure is tedious to work in someone else’s kitchen.

And it’s not the gluten and dairy, people, it’s the poor eating habit and the lack of care of what we put into our bodies. We had a beautiful gluten and dairy free Christmas dinner, cooked in my mom’s kitchen with only me and the kids being gluten and dairy free. But she made the effort to get the right stuff, and not a single wheat-eating person missed the wheat, not even at dessert.

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Azita’s first day of school. She’s ready, I’m ready… there was little anxiety on our parts besides the natural amount. Many people asked how I felt, I think expecting it to have been difficult. I feel mostly just proud. It was hard on Ada and Payman, actually.

I’ve also done my groundwork and met with the teacher and a representative of the county about food and chemical sensitivities, so I felt fine about that. Azita did complain of a tummy ache today– what she sometimes complains of when she is exposed to a chemical smell or substance that doesn’t agree with her. But we won’t jump to comclusions yet.

In the car this morning Azita was assuring Ada that they would play when they got home. When I took Ada out of the car seat, I told her we’d be leaving Azita at school and she burst into tears. During the day, she’d hear a noise and say “It’s Azita!” and I’d tell her that Azi is still at school, and she actually said– in her two-year-old voice– “that’s horrible”.

Not only is it horrible, it inspired this shot, better than the grumpy face one I was going to use:

I wasn’t worried about Azita. She’s much more outgoing than I was. I remember clinging to my mom and needing to be distracted by coloring a ball so she could leave. Azita got a Cinderella picture to color and the boys got Toy Story pictures. Has the marketing of gender specific brands increased since I was a kindergartener, then?

I also remember not eating lunch for the first week of school because I didn’t know where to find the silverware and I was too shy to ask. Azita is hardly cripplingly shy.

The boy was looking for a gray, and Azita went right up to the teacher and said “He needs a gray. Do you have one?”

I wasn’t surprised when I picked her up and the teacher told me she was a little too talkative. That was the most anxious part of the day– waiting in the car line for 20 minutes, knowing she’s 50 feet away or so. Her little face was so excited when she saw us. I didn’t park to go get her sooner because Ada had fallen back asleep in the carseat. She’d been woken up for the second time during her nap to pick Azita up. Maybe a decent bed time will be in the cards now that Azita has a strict schedule.

Here is Ada, trying to stay awake as we drove to pick up her “sthither”:

And finally she drooped as we waited in line:

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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.

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