Help me figure out what to do next

[bodhitree]

I've been working on figuring out my DD's food issues for the past few months. We are currently avoiding dairy, gluten, citrus, chocolate, and almost all soy (aside from occasional very small amounts of tamari). We also mostly avoid eggs, simply because we have never eaten them very much and I don't want to use such an allergenic food as a replacement for all the stuff we've cut out.

Here are the results I have seen after eliminating various foods:

-Dairy: DD's rash that she had for a month and half started clearing up three days after stopping dairy.

-Gluten: She started seeming a lot less anxious after stopping gluten. She had been having crazy intense separation anxiety for several months, and it disappeared at the same time that we cut out gluten. Possibly a coincidence, but it really did seem like flipping a switch.

-Citrus and chocolate: I noticed that frequent waking in the first couple hours of the night seemed to correlate with eating citrus and chocolate. We cut them out, and now she usually only wakes once in the first few hours after going down for the night.

-Soy: We cut that out because I've heard that kids who have problems with dairy also often have problems with soy. We do still occasionally eat fermented soy (like a tablespoon of tamari in a whole pot of coconut curry), but I haven't noticed any difference in behavior, skin, or sleep when we eat it versus when we don't.

The problem I'm having is that she still doesn't seem to be at baseline, and I don't feel like I can keep cutting things out. I am a longtime vegetarian (it's been fifteen years since I ate meat), and I'm not at this point wanting to go back to eating meat, but with eliminating all of these things, it's starting to feel hard to find things to eat and maintain a diet that's varied enough for us to be getting all our nutrients. I was trying to cut out corn this week, but it always sneaks in somehow in some little ingredient I didn't even think about until after I've already eaten it.

The things that make me think DD is not at baseline yet are that she still wakes about 6 times on an average night, and she still has rashy skin (faint patches around her mouth, and now two new patches of eczema that I just noticed today on her upper arms). The problem is, I'm not sure what my next steps are. I'm reluctant to do any allergy testing because I've read over and over again how inaccurate those tests can be. We also can't pay out of pocket for any testing at this time, so that limits our ability to do any of the nonmainstream tests that people sometimes do.

So what do I do next? I don't feel like I can cut out any more major allergens, like corn, without adding something else back in. I'm already food journaling, but I'm not seeing any clear patterns. We do eat peanut butter every day, and I have slight suspicions of tomatoes as well, so maybe should I try rotating those in and out and see what happens? This whole process is starting to feel overwhelming to me, and I just can't see what the best next steps would be.

This got really long. Thanks for reading! And thanks in advance for any suggestions anyone can offer.

[kjbrown92]

The rotating might give you some answers. Some things take a while to get out of your system so it depends how often, for instance, that you're having the soy, even if it's only a small amount. My DS would react to that amount. And his soy reactions last for 10 days. So that's still a possibility. Are you still BFing and she's eating solids? That makes things a little more difficult to track. Because you're looking at a delay through you and it staying in your system longer (different for everyone, for me it took 4 days to get offender out of my milk) AND direct ingestion and however long it takes to get through her. Without BFing, it gets a little easier because you're only looking at one. My kids still rotate any foods they've added back in over the last year (they've been restricted for... ever... but they've been on a rotation for 2.5 years but we stopped rotating some of the safest foods after about a year and a half).

[DevaMajka]

It's hard to know what to do after you have out so many foods. I hear ya there! I've had a heck of a time finding patterns too- that gets really frustrating. What worked for us was to kind of guess. lol 

One day, J's eczema got worse than usual (and it seemed sudden, so we suspected it was something from that day), so we took out what seemed like the most likely suspects. I actually don't remember how accurate THAT was, but after that, I more or less made educated guesses, and started taking those foods out. I based it on gut feelings, foods I suspected at any point, and foods that came up more often in the days preceding reactions (even if it wasn't every time). That worked out really well- we actually have out all the major eczema food triggers, and some triggers for other symptoms.

It's been a year for us, and had only found one trigger before last month, when we "guessed" and came up with a few of them. We haven't officially tested them, but looking at patterns and accidental exposures, I think at least half of them truly are triggers. 

I think your idea of taking out peanut butter and tomatoes for a few days is a good one. (we used to eat a lot of vegan meals, and I cook a LOT with tomatoes. I sort of suspect them too, but I'm hesitant to take them out.)

Another idea- add a lot more variety wherever you can- veggies you don't usually eat, different beans, etc. (I'd probably keep fruit to a relative low, though.) It might help spot a pattern if you are consuming a particular food less often.

[bodhitree]

Originally Posted by DevaMajka 

It's hard to know what to do after you have out so many foods. I hear ya there! I've had a heck of a time finding patterns too- that gets really frustrating. What worked for us was to kind of guess. lol 

One day, J's eczema got worse than usual (and it seemed sudden, so we suspected it was something from that day), so we took out what seemed like the most likely suspects. I actually don't remember how accurate THAT was, but after that, I more or less made educated guesses, and started taking those foods out. I based it on gut feelings, foods I suspected at any point, and foods that came up more often in the days preceding reactions (even if it wasn't every time). That worked out really well- we actually have out all the major eczema food triggers, and some triggers for other symptoms.

It's been a year for us, and had only found one trigger before last month, when we "guessed" and came up with a few of them. We haven't officially tested them, but looking at patterns and accidental exposures, I think at least half of them truly are triggers. 

I think your idea of taking out peanut butter and tomatoes for a few days is a good one. (we used to eat a lot of vegan meals, and I cook a LOT with tomatoes. I sort of suspect them too, but I'm hesitant to take them out.)

Another idea- add a lot more variety wherever you can- veggies you don't usually eat, different beans, etc. (I'd probably keep fruit to a relative low, though.) It might help spot a pattern if you are consuming a particular food less often.

Thanks for the empathy. I think that's what I needed more than anything else, honestly. Sometimes reading on here makes me feel like this process is easy for everyone else and is only hard for me (which I understand must not actually be true--I'm sure people just don't feel like complaining and don't mention how hard it is).

We are switching to almond butter for the next couple weeks to see what happens, then if we don't see any improvement I will probably try sunbutter for a couple weeks after that. I'll work on cutting out tomato for a while too.

I also really like your idea of adding more variety with fruits and veggies. We do usually eat more variety of fruits and veggies than the average family, I think, but we could certainly do better. I have a suspicion of apples in the back of my mind too, so I will try rotating through bananas and pears to see what happens.
 

Originally Posted by kjbrown92 

The rotating might give you some answers. Some things take a while to get out of your system so it depends how often, for instance, that you're having the soy, even if it's only a small amount. My DS would react to that amount. And his soy reactions last for 10 days. So that's still a possibility. Are you still BFing and she's eating solids? That makes things a little more difficult to track. Because you're looking at a delay through you and it staying in your system longer (different for everyone, for me it took 4 days to get offender out of my milk) AND direct ingestion and however long it takes to get through her. Without BFing, it gets a little easier because you're only looking at one. My kids still rotate any foods they've added back in over the last year (they've been restricted for... ever... but they've been on a rotation for 2.5 years but we stopped rotating some of the safest foods after about a year and a half).

Yes, we are still BFing. She's 21mo so she eats a lot of solids, but we usually eat all of the same things. That's a good idea to rotate foods even after you add them back in, so I'll have to keep that in mind. I'm working on a sub for the tamari, but nowhere around here seems to carry the coconut aminos. I'm looking for the chickpea miso someone mentioned on my other thread as a possible sub too.

[nick&jonmom]

Just curious if you're eating legumes. Without knowing yours or childrens allergy history, it's hard to say but my experience with my severly allergic 9 yo ds is that he cannot eat any legumes at all. He's very allergic to peanuts and soy and all other beans that we've ever tried or had him tested for. He's not even ok with peas. I know that being a vegetartian limits your protein sources, but honestly legumes could be a big culprit for your nurslings allergic reactions. I myself am at the end of my rope with my nursling (baby #3) since she seems to be more sensitive then either of my boys were....getting ready to post for some help myself!! Good luck, it is such a tedious road and food is such an integral part of life that it just really sucks sometimes!! Hugs to you!!!

[kjbrown92]

Originally Posted by bodhitree 

Thanks for the empathy. I think that's what I needed more than anything else, honestly. Sometimes reading on here makes me feel like this process is easy for everyone else and is only hard for me (which I understand must not actually be true--I'm sure people just don't feel like complaining and don't mention how hard it is).

We are switching to almond butter for the next couple weeks to see what happens, then if we don't see any improvement I will probably try sunbutter for a couple weeks after that. I'll work on cutting out tomato for a while too.

I also really like your idea of adding more variety with fruits and veggies. We do usually eat more variety of fruits and veggies than the average family, I think, but we could certainly do better. I have a suspicion of apples in the back of my mind too, so I will try rotating through bananas and pears to see what happens.
 

Originally Posted by kjbrown92 

The rotating might give you some answers. Some things take a while to get out of your system so it depends how often, for instance, that you're having the soy, even if it's only a small amount. My DS would react to that amount. And his soy reactions last for 10 days. So that's still a possibility. Are you still BFing and she's eating solids? That makes things a little more difficult to track. Because you're looking at a delay through you and it staying in your system longer (different for everyone, for me it took 4 days to get offender out of my milk) AND direct ingestion and however long it takes to get through her. Without BFing, it gets a little easier because you're only looking at one. My kids still rotate any foods they've added back in over the last year (they've been restricted for... ever... but they've been on a rotation for 2.5 years but we stopped rotating some of the safest foods after about a year and a half).

Yes, we are still BFing. She's 21mo so she eats a lot of solids, but we usually eat all of the same things. That's a good idea to rotate foods even after you add them back in, so I'll have to keep that in mind. I'm working on a sub for the tamari, but nowhere around here seems to carry the coconut aminos. I'm looking for the chickpea miso someone mentioned on my other thread as a possible sub too.

It's still a good idea to do the journal. It just might be harder to figure out, but write down what you're eating and what she's eating, plus all the symptoms. I found both the Coconut Aminos and the Chickpea Miso at Whole Foods. If you go to the website, you might ask if they have some at a store near you. I also find some of the odder things on line. Like sweet potato starch. The only place I've ever found that is Barry's Farm online.

It's not easy. I don't think any of us had it easy. I've been doing it over 10 years. And we're still doing it. DS will be 11yo in June, and he was projectile vomiting at a week old from dairy in my diet. And then soy on direct ingestion. Still took me a while to figure out. And then we kept thinking he'd "outgrow" it, add it back in, things seemed good, then he'd change symptoms, so we'd end up pulling it out again after making the connection. Then had DD2 who didn't react to anything through my milk. It wasn't until she started solids. But did I notice? Even after having one child with food intolerances? No. I went to the doctor and said why does she still get up so often in the night? And he said "maybe she's lactose intolerant" And I was like duh - why am I so oblivious. Of course I knew she wasn't lactose intolerant, but I started on an elimination diet and food journaling. Now she's almost 6yo. So if you'd seen me in the early days with food journals all over the counters and all the recipes I tried that were failures, and me walking around like a zombie because the kids were up all night, you'd see that it wasn't easy. Sometimes it's brutal, and frustrating, and sometimes you want to cry or scream. And if it makes you feel better, go for it. And most of us have had our share of clueless doctors as well. My only goal is to make it easier for just one person who is on this journey. And if you want to rant, and it helps ease your frustration, we'll still listen. And we might offer ideas that you haven't thought of, or that you've tried and rejected. It's still a learning experience for almost all of us.

 

[ASusan]

I wouldn't discount a typical (IgE) allergy test. A RAST was our starting point, and it was SO helpful. It's a (simple) blood draw, and your ped/fam practitioner can order it. If anything IS positive, it also gives you a baseline that suggests how intense the reaction is (so you can follow it over time). Is it 100% accurate? No. Does it give you IgG reactions/intolerances? No. But is is another piece of data.

[DevaMajka]

Originally Posted by bodhitree 

Thanks for the empathy. I think that's what I needed more than anything else, honestly.

I know what you mean! A month ago, I didn't have anything figured out (other than sweet potato, which we've known for a while), and I really couldn't figure out how people know all these things like "he reacts to banana, but only if he doesn't take enough mag and if he's also had tomato in the past week, and only if it's a full moon." lol. I'm totally making that up, but ykwim. I always feel like other people are so much better at figuring out the patterns than I am, and I'm sitting here looking at something obvious but can't put it together.

I've since realized that seeing those little patterns ("he can eat one chip, but not 5, and he does better when taking probiotics" stuff like that) are probably a lot easier once you just figure out the darn foods. That's the hard part (in my limited experience). And buddy can it be hard!

How long have you food journalled? Because for me it took 6 weeks to see a pattern with sweet potato, but when I looked back it was a pretty clear pattern. I just didn't think to suspect sweet potato, kwim? It's been a year since, and I just realized in the last few months that his poop is related to his sleep. It wasn't a clear pattern- some days the mushy poop is before the sleep, some days it's after, so it wasn't an easy pattern to spot. And egg- NOW egg seems to trigger his eczema, but we never noticed it before. I don't know why- maybe we didn't eat eggs often enough for it to get that bad, or maybe we had other triggers in that were hiding the egg pattern. So it's just one of those things you have to keep up, take out things that you suspect, and don't consider ANYTHING completely safe until you're at baseline.

oh, and also write down all potential symptoms- I missed some in the beginning, and I think it would have helped a lot sooner if I'd had them. And it makes a difference how the journal is organized, I'm finding. I now have separate columns for each symptom, and that's what made it easier to spot the poop-sleep relationship.

[bodhitree]

Why doesn't multi-quote work right anymore?
 

Originally Posted by nick&jonmom 

Just curious if you're eating legumes. Without knowing yours or childrens allergy history, it's hard to say but my experience with my severly allergic 9 yo ds is that he cannot eat any legumes at all. He's very allergic to peanuts and soy and all other beans that we've ever tried or had him tested for. He's not even ok with peas. I know that being a vegetartian limits your protein sources, but honestly legumes could be a big culprit for your nurslings allergic reactions. I myself am at the end of my rope with my nursling (baby #3) since she seems to be more sensitive then either of my boys were....getting ready to post for some help myself!! Good luck, it is such a tedious road and food is such an integral part of life that it just really sucks sometimes!! Hugs to you!!!

Yes, we eat lots of legumes since they are a major protein source for us. I hope that's not the problem, because I don't see how we could be healthy vegetarians without them! Good luck getting your little nursling's needs figured out.
 

Originally Posted by kjbrown92 

It's still a good idea to do the journal. It just might be harder to figure out, but write down what you're eating and what she's eating, plus all the symptoms. I found both the Coconut Aminos and the Chickpea Miso at Whole Foods. If you go to the website, you might ask if they have some at a store near you. I also find some of the odder things on line. Like sweet potato starch. The only place I've ever found that is Barry's Farm online.

It's not easy. I don't think any of us had it easy. I've been doing it over 10 years. And we're still doing it. DS will be 11yo in June, and he was projectile vomiting at a week old from dairy in my diet. And then soy on direct ingestion. Still took me a while to figure out. And then we kept thinking he'd "outgrow" it, add it back in, things seemed good, then he'd change symptoms, so we'd end up pulling it out again after making the connection. Then had DD2 who didn't react to anything through my milk. It wasn't until she started solids. But did I notice? Even after having one child with food intolerances? No. I went to the doctor and said why does she still get up so often in the night? And he said "maybe she's lactose intolerant" And I was like duh - why am I so oblivious. Of course I knew she wasn't lactose intolerant, but I started on an elimination diet and food journaling. Now she's almost 6yo. So if you'd seen me in the early days with food journals all over the counters and all the recipes I tried that were failures, and me walking around like a zombie because the kids were up all night, you'd see that it wasn't easy. Sometimes it's brutal, and frustrating, and sometimes you want to cry or scream. And if it makes you feel better, go for it. And most of us have had our share of clueless doctors as well. My only goal is to make it easier for just one person who is on this journey. And if you want to rant, and it helps ease your frustration, we'll still listen. And we might offer ideas that you haven't thought of, or that you've tried and rejected. It's still a learning experience for almost all of us.

 

Thanks for sharing about your experiences. That makes me feel better. I have had lots of failed recipes over the past couple of months, and I think I have probably only had five nights of truly good sleep since DD was born. I walk around like a zombie a lot of days. It's kind of sad that I'm truly pleased that she only wakes around six times a night these days. But I will take any progress I can get, however slow and difficult!

I did find the chickpea miso and coconut aminos at the bigger Whole Foods here in town today. Silly me, I was looking by the Asian foods, but the coconut aminos were by the special raw foods and the miso was refrigerated by the tofu and stuff, not by the other misos.

I am going to keep doing the food journal. I actually made a spreadsheet for it, because I'm that kind of gal. I have columns to list everything we eat during the day, columns to check off if suspect foods were consumed that day, and columns for symptoms. I hope that more patterns will start becoming apparent soon. In the meantime, thanks for your help. I really appreciate it.

[bodhitree]

Originally Posted by DevaMajka 

How long have you food journalled? Because for me it took 6 weeks to see a pattern with sweet potato, but when I looked back it was a pretty clear pattern. I just didn't think to suspect sweet potato, kwim? It's been a year since, and I just realized in the last few months that his poop is related to his sleep. It wasn't a clear pattern- some days the mushy poop is before the sleep, some days it's after, so it wasn't an easy pattern to spot. And egg- NOW egg seems to trigger his eczema, but we never noticed it before. I don't know why- maybe we didn't eat eggs often enough for it to get that bad, or maybe we had other triggers in that were hiding the egg pattern. So it's just one of those things you have to keep up, take out things that you suspect, and don't consider ANYTHING completely safe until you're at baseline.

oh, and also write down all potential symptoms- I missed some in the beginning, and I think it would have helped a lot sooner if I'd had them. And it makes a difference how the journal is organized, I'm finding. I now have separate columns for each symptom, and that's what made it easier to spot the poop-sleep relationship.

I've been food journaling since the beginning of December, so I don't have as much data yet. What are all the symptoms that you track? I have columns for sleep, skin, general mood, and notes on anything else that seems unusual, but I'm sure there's something I'm missing.

[bodhitree]

Originally Posted by ASusan 

I wouldn't discount a typical (IgE) allergy test. A RAST was our starting point, and it was SO helpful. It's a (simple) blood draw, and your ped/fam practitioner can order it. If anything IS positive, it also gives you a baseline that suggests how intense the reaction is (so you can follow it over time). Is it 100% accurate? No. Does it give you IgG reactions/intolerances? No. But is is another piece of data.

You know, you make a really good point. The fact that it isn't perfect data and won't solve all my problems doesn't necessarily mean it isn't worth doing. I think I'll make an appointment with DD's ped to talk about that. Thanks!

[DevaMajka]

Originally Posted by bodhitree 

Originally Posted by DevaMajka 

How long have you food journalled? Because for me it took 6 weeks to see a pattern with sweet potato, but when I looked back it was a pretty clear pattern. I just didn't think to suspect sweet potato, kwim? It's been a year since, and I just realized in the last few months that his poop is related to his sleep. It wasn't a clear pattern- some days the mushy poop is before the sleep, some days it's after, so it wasn't an easy pattern to spot. And egg- NOW egg seems to trigger his eczema, but we never noticed it before. I don't know why- maybe we didn't eat eggs often enough for it to get that bad, or maybe we had other triggers in that were hiding the egg pattern. So it's just one of those things you have to keep up, take out things that you suspect, and don't consider ANYTHING completely safe until you're at baseline.

oh, and also write down all potential symptoms- I missed some in the beginning, and I think it would have helped a lot sooner if I'd had them. And it makes a difference how the journal is organized, I'm finding. I now have separate columns for each symptom, and that's what made it easier to spot the poop-sleep relationship.

I've been food journaling since the beginning of December, so I don't have as much data yet. What are all the symptoms that you track? I have columns for sleep, skin, general mood, and notes on anything else that seems unusual, but I'm sure there's something I'm missing.

My columns for ds2 are eczema/rashes, sleep, poop, and "other" which would be stuff like peeing more frequently than usual, headbanging, being unusually fussy, etc. So you pretty much have all those, except the poop (which may not be an issue for you).

Ds1 (potential) symptoms are dark undereye circles, red ears, potty accidents, and rashes.