Tuesday, January 4, 2011

The Elimination Diet Saga

Not so sure about beets.


It is taking me a really long time to finish this post. I wrote the first draft in October, and every time I sit down to edit and hopefully be done with it, I find I have more to add. On the whole, I feel ready to put this whole elimination diet to rest—to report my findings, proclaim my success, reflect on what I’ve learned, and move on to other subjects. But what I’m realizing (in part due to my inability to finish this post) is that this process of keeping a careful record of what I eat (or now that we’ve started solids, of what I feed Cedar too), and then tracking his reactions, will continue for many months still, if not years.


Of course, it won’t ever be as challenging as when the list of things I wasn’t eating exceeded the thing I did eat. And it won’t ever be as challenging as when I didn’t know what was causing Cedar’s gas pains that led him to writhe in pain, nor what was causing his face to be covered in a red, puffy rash which caused him to scratch it into infected, yellowing sores. No, those hardest days are far behind us already. In comparison, the challenges we now face are easy.  



But let me back up and recount this journey, for it has been no small feat. For five months and counting, I have been on an elimination diet. I started the diet back in August when Cedar was about four months old and had been suffering for a couple months through bad gassy spells. Some days, his gas would come and go throughout the day, causing discomfort, but nothing that couldn’t be appeased with a little nursing, bouncing and distraction. Other days, however, his gas would wake him from his sleep with an anguished howl, and a particularly bad spell might last for over an hour, during which I would bounce, massage, nurse, and shift him from position to position, trying to bring some relief.



In addition to the gas, Cedar had a rash on his cheeks ever since he was about a month old. My midwife had suggested it might be from dairy, and sure enough  once I eliminated dairy, it went away. (Later it would come back, though nowhere near as bad, and I’m no longer sure this subsequent rash is now food-related). Cedar’s gas and rash symptoms peaked at around four months. On days when I was especially exhausted, his discomfort could be enough to tip me over the edge into tears myself. I tried gripe water and Hyland colic tablets, I talked to his doctor, I made an effort to burp him more often (wondering if perhaps the gas was from air bubbles created when feeding), I did research online, but nothing was of much help. I tried to trace his gas to foods I was eating, and started avoiding things like cabbage and beans -- but still, his gas persisted.



Finally, I decided to visit a naturopath. I suspected that she would probably have me go on an elimination diet, and though I’d dreaded going to this extreme, I was convinced by now that more action was needed. I was tired of the guesswork. The ND gave me a long list of foods I shouldn’t eat, and briefly explained how I could reintroduce them one by one, after Cedar’s gas disappeared. How long would I have to be on this diet? She couldn’t say exactly. It could be months.



And so I cut out all dairy, soy, gluten, eggs, corn, tree nuts, peanuts, shellfish, beans, garlic, onions, tomatoes, citrus, peppers, spicy foods, coffee, and Brassica vegetables (broccoli, cauliflower, cabbage, kale, brussel sprouts, radishes, turnips, bok choy, etc.) from my diet. After doing more research, I also began avoiding fish, pork, processed meats, peas, berries, mustard, and cinnamon, which had also appeared in some sources as potential allergens. I was already cutting out so much that I didn’t want to take any chances.



Within a few weeks, Cedar’s gas pains went away. He still had a gassy moment or two, but none of the whimpering in his sleep, none of the prolonged cries that required constant bouncing and soothing to abate. For this, the diet was already worth it; for this I could already proclaim it a success. But we were only just getting started. I would still need to introduce each item, one by one, then wait for a reaction which could come anywhere from 4 hours to 3 days later. The naturopath explained how sometimes a little of something might be okay, but a little of this, plus a little of this, and a little of this, all together could create a reaction. So if you didn’t test everything one by one, and in a significant enough quantity, you could never be sure what caused each reaction. Also, I quickly learned that many reactions could last for several days, which meant that it might take a full week just to test one item on the list. And even then, if a test result wasn’t entirely clear, I would need to retest it. This is why elimination diets are a huge commitment and can take forever, but they also can provide the clearest and most accurate results, as opposed to blood tests which often show false positives.



Thankfully, summer was an ideal time to embark on such a diet. Despite having so many foods off limits, I could still eat plenty of fresh fruits (think nectarines, apples, apricots, cherries…) and vegetables (chard, spinach, lettuce, cucumbers, beets, and carrots were my mainstays), along with chicken, beef, quinoa, rice, and potatoes. I ate a ton of avocados, the only creamy thing I could spread on a sandwich, which I’d make with millet bread from the PCC, the best gluten-free option I found. Frequent treats included bags of salt and vinegar potato chips (seeing that every other flavor but plain had onion or garlic powder in it), coconut ice cream, Larabars (once I was eating nuts), and Pamela’s gluten-free, vegan ginger-almond cookies. Oh yeah, and wine. I never eliminated wine, grateful it wasn’t on my list. And I never could bring myself to cut out caffeine either, but I did go down to just one cup of tea a day for the first while, and coffee was then one of the first things I tested. Thankfully, it proved to be okay. There’s nothing worse than being sleep-deprived and cut off from caffeine.



As long as I planned my meals ahead of time and only ate at home, this diet wasn’t that hard to follow and could still be pretty delicious. Most things still taste pretty good marinated with olive oil, salt, balsamic, and maybe a little sugar or wine.  But good luck finding anything in a restaurant or deli that doesn’t have garlic, onions, soy oil, butter, or cheese in it. Not even the PCC makes dishes without garlic. I must say, however, that without my husband’s help dreaming up new dishes that I could eat, it would have been much harder. For the most part, he’s eaten what I’ve eaten for dinner, and seldom tempts me to stray by bringing ‘forbidden foods’ into the house.



That said, after just two weeks on the diet, I couldn’t wait to start reintroducing foods. Salmon and almonds were amongst the first foods I tested, and to my relief, Cedar did not seem to have a reaction to them. Hurrah! I could start eating almond butter on my millet bread for breakfast, and smoked salmon (caught and smoked by my husband, no less) in my salad for lunch. These were nice easy options for a quick protein fix, as opposed to always having to fry up a piece of raw meat. Sure I like meat, but I was not used to eating so much of it, at every meal, without any other source of protein for variation.



I mapped out a rough plan of what order to test things in, but often I ended up spontaneously changing my mind on what to try next, based on what we had (or didn’t have) around and how hungry I was. Mostly, I wanted to start with the foods that I least expected Cedar to have a reaction to so I could expand my diet as quickly as possible, and then work towards the items that were the most common allergy culprits: namely soy, gluten, corn, peanuts, shellfish and eggs. (I wasn’t even going to bother testing dairy.) I kept a careful record of everything I ate each day and Cedar’s sleep patterns to see how much of his frequent waking was linked to gas.  I wanted to be able to catch any subtle reactions, in addition to the obvious ones.



Hoping to reintroduce another easy protein source, I tested eggs early on, despite it being a common allergen. Cedar seemed a little more gassy about three days later, but I wasn’t sure, so I decided to hold off on eating them still and retest them later. Next, I tried tomatoes, and Cedar had a definite reaction a day or so later. I hadn’t suspected tomatoes. (So maybe those times he’d reacted badly to spaghetti, it wasn’t the garlic or the wheat, but the tomatoes that were affecting him! These were the kinds of small revelations I was having.)  Next, came citrus. I ate two oranges, and Cedar seemed a little gassier than usual a couple days later, but I wasn’t positive. My conclusion? I could have a little lemon or lime in my food, but I should probably stay away from guzzling glasses of orange juice for now. Easy enough.



Next, came soy. I drank four cups of soy milk over breakfast and lunch. Four hours later: major gas. The next day: restlessness and difficulty napping. And the next day: still gassy and restless. Definitely a reaction. I also hadn’t expected soy.



As much as I was hoping Cedar wouldn’t react to most things, it was also a relief when he would show a reaction because this meant that there was a point to me going to all this effort. It would have been so frustrating to go through months of self-sacrifice only to emerge with inconclusive results.



By now we were already about two months into this whole endeavor—three weeks where I’d eliminated everything, and five weeks of reintroducing foods. Peanuts came next. Cedar was definitely really gassy for the next few days. The problem was, however, that the same night I tested peanuts, my husband had (without thinking) put a dash of garlic and hot pepper-infused vinegar in our rice pasta dish. So the peanut test was wasted, which might not seem like a big deal except that it represented one more week I would have to be on this diet-- and at this point, I was increasingly anxious to be done with it.



Making mistakes like this was so frustrating, but so easy the minute I let my guard down and forgot to read a label. So much is hidden in so much. Like dairy in salami, or soy oil in granola, breads, tortillas, crackers, and mayonnaise. Soy is in everything, and most of it is genetically modified which is probably what has made it such an allergen for people. One night I was so excited that my husband was making a gluten-free crust and gravy for a chicken pot pie, and that we were actually eating something different for dinner that I forgot all about the fact that soy oil is what is in Crisco. Fuck. Soy again. Nights of a sleepless baby again. We already knew soy was bad for Cedar, and this now meant days of gassiness and another week added on to the diet.



Surprisingly, gluten proved to be just fine. I’d held off on testing gluten for months, assuming the worst. What a relief! Beer! Toast! How nice to know that my diet would improve again, even if I still cannot have anything vaguely creamy for some time.



By now, I’d started to get impatient and cut a few corners, for example eating some pecans, walnuts, ginger, cinnamon and berries without formally testing them, to no obvious adverse affect. Garbanzos were also okay (yay, more protein!), as was corn, kale, red peppers, mustard, and onions—the latter two of which have been especially exciting in the flavor department. I never thought I’d be so excited about mustard.



I’m still not sure about eggs. I’ve since read that eggs are one of those allergens that cause rashes more than they do gas, and since Cedar’s rash never completely went away, it is hard to tell for sure if he had a reaction the last time I tried them. I don’t really want to eat a ton at once and risk a bad outbreak, plus not a day goes by when I’m still not fantasizing about the next new food I’ll try, so it’s easier for me to just avoid eggs for now, indulging on occasion. (Plus, they make me gassy too.) And sadly, garlic also tested not okay, prompting major gas spells the two or three times I had it. There is so much I want to eat that has garlic in it.



I’m still gauging if I can get away with eating small amounts of things here and there (not to mention whether organic vs. non-organic, or GMO or non-GMO versions will make a difference to Cedar’s system), but all of this takes time—the requisite three days to wait after testing something if I want to do it right. In the meantime, we’ve also started introducing Cedar to solids, which means we have to wait three days after giving him something new too. (This is recommended practice for all babies, but especially so if your baby has already proven to be sensitive.) So far, we’ve given him yams, pumpkin, avocado, banana, peas, quinoa, apple, beets, and oatmeal. And so far, no obvious reactions, though I have a few suspicions. Since he eats so little of each thing at this point, however, it’s hard to say for sure. Time will tell.



For now, Cedar and I take turns trying new foods—this week, mama tests something, next week, Cedar. If there are no gassy reactions, then we can try two new foods a week, if there is a reaction, then maybe one.  It’s not that I expect him to be allergic to most things, especially the vegetables and fruits we’re starting him on, but when you’ve committed five months and counting to this process, it just doesn’t make sense to start getting sloppy now. It’s worth it to still proceed cautiously, one food at a time, because in the long run, that is the quickest way that we are both going to expand our palettes.



That brings us up to present. I still need to retest peanuts, and try shellfish, both of which I’ve avoided (call it intuition-- or fear). And then that pretty much just leaves all the individual gassy vegetables, beans, plus combinations or varying amounts of this and that. Sometimes I end up testing things on a whim, because I am hungry, get a craving, or there is no other immediate tasty option. For instance, when I decided to “test” a Dick’s burger and fries, or indulge in dark chocolate, which is really hard to find without soy lecithin in it, an “emulsifier”, whatever that is. And of course, by now, Cedar may very well have started to outgrow some of his sensitivities, which means that I could start retesting things if I wanted to. For instance, I tried butter the other week—apple pie for Christmas. In the past, the dairy rash reaction tended to come on a day or two afterward, and sometimes wasn’t so obvious until I’d had dairy a few times. I’m pretty sure his rash got worse after the butter, so I’ve deemed it still off limits, but I’m still planning to test goat cheese soon which might be less offensive than cow products. Sigh. Am I tiring you out yet with these details?  



At times I’ve felt like some people think I’m being overly cautious in my approach, but if they’d witnessed how uncomfortable Cedar once was and knew how much harder it makes our life when he doesn’t sleep well because of gas, then maybe they’d understand. It’s hard for me to explain the sinking feeling of dread that overcomes me when I hear Cedar begin to whimper in his sleep. I usually go into the bedroom to stand nearby so that the moment he wakes up crying, which I know from experience will come soon, I can be there to soothe and nurse him back to sleep.



In many ways, I feel like I’ve been flying solo on this whole endeavor, with the exception of the support of my husband. I don’t have a doctor who has guided me through the process, since my pediatrician knows little about food allergies, and the naturopath I first visited left me with some doubts as well as to her knowledge of infants and transference through breast milk. I have also not had the time to do the additional research that I would if I could. For instance, I’ve wanted to visit another ND for months, one who knows more about babies and who takes my insurance, but it seems like I blink, and before I know it, another month has gone by. At times, I’ve had to just let my intuition guide me, a resource I don’t want to underestimate. But I do suspect that if I’d had a skilled expert in children and food allergies guiding me through this from the beginning, I might have proceeded more efficiently and saved myself some of this trial, error, and guesswork. An expert might have been able to help me analyze the patterns of Cedar’s reactions, or cue me in from the beginning which sensitivities were likely to appear as a rash versus gas, or both. An expert might also help me figure out where I have been overly cautious with my diet, and where I might still not be cautious enough.



In the end, I’ve pieced together what knowledge I can in what time I’ve had, made a plan, and stuck with it. I’ve seen positive, conclusive results, at the same time that I still have lots of questions and unknowns. I’ve been taking fish oil for the last couple months, recommended by many to help eczema, and I think it’s made a huge difference for Cedar. I’ve also been using a borage butter baby eczema cream, which may or may not be helping too. Several have mentioned that I should also take probiotics or give them to Cedar directly, but I haven’t had the time yet to research what dosage. You’d think I’d jump on any potential solution immediately, but as a full-time mother there are so many things I mean to get around to researching or doing, and inevitably, some things—both potentially important or inconsequential—get put off or forgotten.



For now, Cedar’s gas continues to come and go as I continue to try new foods, mess up and eat things by mistake, or give in to occasional whims that I suspect won’t be worth it but oh well. His rash comes and goes too, perhaps influenced by the air and the environment. I visited a pediatric dermatologist months ago who prescribed hydrocortisone, which I continue to apply sparingly as needed for now since it keeps his rash under control. I’d rather not, since it can cause thinning of the skin if used too much, but the doctor assured me a little bit was okay, so I’ve resigned myself to this “treat the symptom, not the cause” solution. Everyone assures me that Cedar should eventually outgrow his sensitivities or allergies by the time he’s a year old, or two or three. And thankfully, the worst of his symptoms are over.



So, am I still on an elimination diet? Depends how you look at it. My diet has expanded so much since I first started this whole process that it doesn’t really seem like I’m on the same diet anymore when I’m just cooking for myself. And yet, I am still constantly obsessing about food—specifically, what food I’ll test next and how exactly I will eat it. When I do finally get around to eating something new, I take that first bite with a giddy sense of excitement and with an underlying current of dread, knowing that whatever fleeting pleasure these once forbidden flavors give me might not be worth the next day’s reaction. And, of course, put me out in the world and I still can’t eat hardly a thing at any restaurant and I still have to give my hosts a long list of things I can’t eat. I hate being the one with a million special requests, as I’ve never been a picky eater or had any food sensitivities of my own, but most people graciously accommodate, going so far as to omit the precious garlic from their main course.



Still, I remember in the past being a wee bit skeptical of people who had a lot of sensitivities, asking are you sure you can’t have just a little garlic in your dish? (Unspoken implication: are you sure you aren’t being just a little paranoid/overly cautious/or particular? I mean, what’s a little gas?). Even the pediatric dermatologist I visited had this attitude, calling me a “saint” and joking, “I’d just let him fart.” I had to explain that it wasn’t just “a few farts” and nor did he have some mysterious condition called colic that would just “go away with time.” My son’s discomfort was clearly caused by what I put into my body. His rash, on the other hand, I couldn’t say for sure, but being a dermatologist you’d think she would have been more sensitive to the potential food/rash connection.



Yes, this whole process has been incredibly long and tiresome. But nothing compares to how hard it was to not know what was causing or how to help my son’s pain. And although I dearly miss garlic, cheese, and the ability to order take-out or to eat my mom’s home cooking, I am also thankful for the way this diet has forced me to eat more healthily and to notice and appreciate all that I can and do eat every day.

3 comments:

  1. I can relate to so much of this, Anne! I have not followed the elimination/reintroduction process as assiduously as you have, but then I have only my own symptoms to worry about. I can't imagine having to think about my baby's potential discomfort, as well as my own, each time I test a food on impulse! My process is still ongoing; I am probably still avoiding foods I needn't, and eating some I shouldn't. But I feel soooooo much better. I've also watched the GF/CF diet make a night & day difference in my daughter's brain function ... incredibly gratifying, after enduring more than one of those "Aren't you going a little overboard?" conversations!

    So: Congratulations on all you've accomplished for Cedar and for yourself! And I agree that one of the benefits is the simple act of eating consciously, as so few of us do in this culture. For me, that has been a great gift.

    ReplyDelete
  2. Wow. You are a good momma Anne. This has been a lot of work and a commitment. Good for you for embracing the positive aspects of improved nutrition and mindfullness re: what you put into yours & Cedar's bodies. I love reading about your experience, I'm going to forward your post to a friend whose baby has a rash also...and FYI the background color of your webpage makes the text so easy & pleasant to read, feels good on my eyes. :)

    ReplyDelete
  3. Thanks, ladies. Yes, it is so gratifying to see and notice clear results, and so frustrating to be unclear... so glad it's been helping you and your daughter, Jill.
    Yes, Cecilia, please pass it on to her. I am happy to trade notes with anyone going through something similar as I have certainly spent my share of time pondering all this. Glad you like the color, too. I had worried it might be the opposite-- hard to read. But I don't have time these days to fiddle with fonts and formating, even if I wanted to!

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...