Anyone else need an ED support thread? - Page 3

[DevaMajka]

Originally Posted by LisamommyRN

It's been 4 weeks that I've been playing with this diet-eating between 4 and 15 foods. Am I going to be ok?

First, you might be surprised at how balanced your diet is (with the 15 things). I've put a few of my ED's in nutritiondata and found that with my prenatal vitamin (actually, the rec. dose is 3, I only need 2), I pretty much reach 100% of everything. Calories are the hardest for me, but I get close.

Second, I was worried about that too. Even at 100% of the rda's, there is a big benefit to having more variety. That's why I decided to get down to beans and rice, and go from there. BUT I had a very strong feeling that it would only take a day to know if that was working or not. That definitely wouldn't work if you had to do it for a week.

If I were you, I'd go back to the 7 that got you to baseline, then add one thing at a time. But that's not what I would've done a month ago.
Or, if you are SURE that those 7 did get you to baseline, start with those plus one thing.

[DevaMajka]

Also, I want to thank you all for posting here! I so needed a thread like this to commiserate and obsess about my ED and ds's symptoms, and to chat with others doing (or that have done) the same!

eta- I also realized that I used spray canola for the waffle iron, and it has soy lecithin in it- so that must be safe as well!

I wasn't sure if he was reacting to pear, but this morning I looked and he does have a few more bumps. So it's either pear (started 2 days ago) or banana (from 30 minutes before I looked). or both. For some reason, I'm thinking both. That could just be because I'm being negative.
It does give me hope about dairy passing, though.

[LisamommyRN]

Sorry for ducking out for a few days... I got so discouraged/depressed I just couldn't concentrate enough to put a post together about it.
But now I think the frothy poop was due to die off from the introduction of the Pharmax probiotics, not a food reaction- it lasted about two days and left as suddenly as it came on. And looking back at my log, the same thing happened when I first started the culturelle. I only went back to my completely safe list for one day, and good-looking poops started that evening, too soon for me to attribute them to the re-restricted diet. So now I'm back to 13 or so foods. I'll keep them stable for 2 more days or so, then start adding again.

Mamafish- the reason I'm not thinking it's a reaction to the FOS/inulin etc is that we were taking very consistently, even when we were at our best "baseline." It only seems to be a problem upon initation. Does that make sense?

DevaMajka- So sorry about your dog. That must be so stressful. Congrats on the soy lecitin, though! that's huge. I hope dairy passes, too. And you're right, this thread has really been helpful. It's great just to have a few people following along, so I don't have to retell the whole story each time I want advice or opinions. And thanks also for mentioning that nutritiondata site- it's really cool! (Very very slow to load, but very cool.) Based on it's analysis, I'm really only missing zinc, b12, and thiamin... makes me consider a bcomplex supplement, cause the foods recommended are rather outside my tastes... we'll see.

northerngirl- what are you up to? have you started work yet? how's everything going?

[DevaMajka]

woohoo! So maybe those 13 foods ARE ok! That's fun. I hope you stay at baseline! Do you have any idea how long it takes to see a reaction for you guys?

northerngirl- what are you up to? have you started work yet? how's everything going?

We're...eh...today I'm back to black beans, quinoa millet waffles, and rice/plain rice cakes. He reacted to something, and now I'm not sure what. I added stuff too fast. Probably banana and maybe milk. Possibly pear too, but I'm not sure I would even count that as a reaction.

So, new plan- get to baseline again (hopefully just a day or two), and get in prenatal vitamins. Then...I dunno, a veggie I guess. I have to figure out a veggie that I think will pass, that ideally ds would like to eat. Carrots, maybe. Nutritionally, the best things to add would be spinach, kale, asparagus, or papaya.

Mamafish- what did you do about the "calcium making sals sensitivity worse" problem? I didn't even take in the rda of calcium yesterday, and the milk seems to have made his rash worse.

[mamafish9]

Originally Posted by LisamommyRN

Mamafish- the reason I'm not thinking it's a reaction to the FOS/inulin etc is that we were taking very consistently, even when we were at our best "baseline." It only seems to be a problem upon initation. Does that make sense?

Sure does - good detective work, and have fun adding more foods!

[northerngirl]

Yes, I'm here ladies. Thanks for thinking of me. It is great to have a few to chat with about the in's and out's of figuring out our LO's sensitivities.
I don't know how you ladies do it eating 7 or 13 things. Ugh. Hats off to you.
Really that is what I should be doing (I think).
We've been hangin' in there. Lots going on. Starting back to work tomorrow. Working from home, but working. Luckily I can work from home this week and some of the next, as long as there is stuff I can do at home.
So my dd has torticollis and a slightly flattened spot on her head (which I don't really see). She tends to look one way all the time and tilts her head slightly.
It was a bit overwhelming at the physical therapist appt. Like we have to all these stretches and make sure that she's not looking with her favorable side and that she not laying on her flat spot. Blah. And it's not like I have her in the bouncer or car seat all the time. Although I feel slightly responsible bc I she was sleeping only on one side of me since birth, and that is the side she turns to. We've since switched. And I want to take her to Cranial Sacral Therapy but $$ is tight and insurance doesn't cover. I'm really going to try to scrape something together so she can go a couple of times.

As for dd's poo, she still has mucus. I have not taken anything else out since nuts last saturday. Things don't seem different bc of that. How long does it take for the mucus to not be there one the offender is gone? I had added a probiotic for me and that hasn't seemed to change anything.
I kinda feel run down and I'm just hungry. On top of all of this I have some weird rash type thing on one of my boobs the size of a silver dollar. A bit on the other side too. I just noticed it 3? days ago. I hope I'm not getting an infection. Never had mastitis, could it be that? I don't have a fever, it doesn't hurt, no bumps, I am tired, had a headache last night. Who knows. Just one more thing. I called my midwife's asst. today and she was concerned about what I am eating, like I am not eating enough, which is probably true.
I am definitely loosing weight, not that that is bad, but I am petite.

I had started to nurse just one side per feeding. Her poops are the same yellowishbrownish with mucus. I think my supply seems less or things are evened out, but I feel empty all the time. It didn't seem like that before.

Deva--thanks for that site rec, I want to sign up. Very interesting.
Wow this got really long. Sorry.

[LisamommyRN]

devamajka- so sorry about the reaction... I know first-hand how devestating it can be to feel set-back like that. But we try try again, right? now you have a little more information... like maybe wait 3 or 4 days between additions? As far as veggies go, I had success with kale- it felt really nourishing, and Kathy swears she's never heard anyone react to it!
northerngirl- thanks for the update! Sorry about the torticullis, but at least the remedies aren't invasive, and maybe you can build the stretches into some sort of massage/bonding bedtime routine, to make it more special and less of a chore.
IME, it takes about 5-9 days to see an improvement in the mucousy poop. Way too long if you ask me . Oh, and the smell changes in that time, too, I noticed. From really stinky to sweet smelling.
I have nothing to contribute re: breast rashes, but I do want to say watch your supply- I did block feeding originally to rule out oversupply, but then when I started the ED my supply tanked, and I ended up having to do sessions where we switched multiple times, and pump extra, to make enough milk to go back to work. Is someone else caring for your LO while you work from home? DH? or are you doing both? Anyway, good luck with your first day "back."

[DevaMajka]

Yep, I'm doing 3 days next time. And kale- yummy! I never realized how nutritious kale really is until I looked it up on nutritiondata.com! So very good for you!

Originally Posted by northerngirl

I don't know how you ladies do it eating 7 or 13 things. Ugh. Hats off to you.

It's mostly that I'm impatient. I think he has multiple sensitivities (unless he's sensitive to rice), and it would take forever to figure it out if I didn't just do a TED. Plus, I have hopes that this shows that there are lots of things that he's NOT sensitive to, so I can start eating yummy things again!


Sorry about the torticollis. Is that something that's relatively easily fixable?

I kinda feel run down and I'm just hungry. On top of all of this I have some weird rash type thing on one of my boobs the size of a silver dollar. A bit on the other side too. I just noticed it 3? days ago. I hope I'm not getting an infection. Never had mastitis, could it be that?

Sounds like it could be bf related. I've had bumps like that, mostly when I was nursing ds1. He usually nursed very very frequently. Sometimes, though, if he was busy for a while (like if we were visiting family) he nursed less, and that's when I was more likely to get lumps/rashes/etc.
Did the red rashes start after you started block feeding?
Make sure you keep feeling for lumps/clogged milk ducts. You don't want it to go too far. But I've had those red spots with ds2, too, and they just went away. Just don't go too long without nursing on each side. I know, that's easier said that done if you're trying to block feed, but just space it out slowly.

It's definitely important to eat a LOT of the foods you can eat. And lots and lots of fat. Oil on stuff, avocados, cheese. I'm probably going overboard on oil, but I just really don't want to underdo it, kwim?

I guess I'm lucky in one regard- I haven't noticed my supply decrease at all since being on an ED.

[mamafish9]

Originally Posted by DevaMajka

It's definitely important to eat a LOT of the foods you can eat. And lots and lots of fat. Oil on stuff, avocados, cheese. I'm probably going overboard on oil, but I just really don't want to underdo it, kwim?

I guess I'm lucky in one regard- I haven't noticed my supply decrease at all since being on an ED.

Those two are related. IMO, the only way not to starve on an ED and have your milk supply tank is to eat a ridiculous amount of fat.

Oops, gotta run!

[DevaMajka]

I'm feeling encouraged today. It seems like his rash is just about gone after a day of no triggers. For this, at least, I'm grateful! I think he reacts within a day too, but I'm not positive of that.

So yesterday was a beans, rice, and waffle day. His rash is really close to gone. I made the executive decision to test the prenatal vitamins, even though his rash isn't totally gone yet. If it continues to get better, we know that the vites are ok. If not, then I'll test them again, properly.
It's a bummer that we still don't get to add anymore food, but the vitamins pack more punch nutritionally.

In looking through my food journal, it looks like we're dealing with a lot of different whole food sensitivities, or more than one food chemical- or a combo of whole foods and chemicals. If it's a food chemical, it's compounded by the calcium in milk (makes sense, with the whole phenosulfur transferase pathway thing). I'm not going to go there though, and try to make predictions- it's too depressing! I'm just going to test the foods one by one, and see where it takes us.
I guess one positive to the food chemical thing, is that supps seem to be helpful in increasing tolerance, so we'd just have to find the right combo.

[mamafish9]

Originally Posted by DevaMajka

. If it's a food chemical, it's compounded by the calcium in milk (makes sense, with the whole phenosulfur transferase pathway thing).

That's a pretty good clue he's mag deficient (the calcium makes absorbing mag more difficult, so it magnifies existing deficiencies). My DS' mag needs doubled when we added milk back in. So push mag directly into him, every way you can. It can turn around quite quickly, if you get enough mag into him.

[DevaMajka]

I wonder if I should just focus on that for a bit- supping mag and mo, and go with your plan of a varied diet for a while.

I mean, my TED worked. But 2 of the first 3 things I added failed (banana failed before I added milk). That seems like a bad sign to me. lol. And if mag and mo help, then whatever fails this TED won't necessarily fail after I add them in.

Do you think the banana and milk failures are enough evidence that it has something to do with that pathway to just go full force into this plan, and ditch the ED for now (but still watch sals)?
The only thing is, he's sensitive to something else in addition to sals and amines. It's either rice, or another food chemical. But it could be glutamates. So maybe I do have my answer.

[DevaMajka]

Wow! I'm a little surprised at what's happening here.

Yesterday, I got discouraged because his rash wasn't gone, and because banana and milk failed. And I was really craving a grilled cheese sandwich with tomato and pickle. So I ate one. It wasn't until after I ate it that I noticed the ingredients of the pickle on it included sodium benzoate (I think he reacted to it before) and tartrazine. He had some grilled cheese sandwich too, but no pickle.
I took my multi, mag and mo, and gave ds a little bit of mag, mo, and probiotic. He didn't take much, because the mag is pretty sour (it has malic acid in it).

Last night he slept pretty well. But the crazy thing is that he didn't pee at all. He was totally dry this morning! (one of his symptoms is frequent urination). AND his main rash is actually a bit better this morning. The rash under his bellybutton, the one that might be ringworm, is slightly worse- I think we've got to take him to the doctor to figure it out.
So, yeah. I'm not sure what to think about his reactions improving! Maybe have a grilled cheese sandwich again today (minus the pickle!) and see what happens.

My plan last night was to add all my supps, chicken, and green beans to the black beans, quinoa, and millet, and see if all those were safe. I'm fairly certain they will be, so it seems like a good place to start.

[Huck]

Hi everyone! I'd like to jump into this support group. I certainly need it. I'll try not to make this too long to start. We've been on an ED for 3 months. No dairy, soy, gluten, corn, nuts, sesame, citrus, tropical fruits, sugar, coffee, chocolate...
We do use coconut oil topically and I drink coconut milk and I have cheated on small amounts of sugar in things like hot dogs. I've also had some bananas-can't decide if they're really tropical.

Unfortunately, I just realized that we've been messing up on corn b/c of all of its hidden forms and corn is one of the foods I was MOST suspicious of.

And I broke down and tried coffee for several days (WHAT WAS I THINKING) which I think caused a reaction (fatigue, runny nose, feeling sick-me).

So, my DD is now 7 months. She started with itchy rashes at just over 3 months and the ND said she had cradle cap, yeast, eczema, & tinea. So we started the ED and her head got much better (it was oozing and awful). But we can't seem to get to baseline (perhaps the corn problem or something environmental??). Her cheeks keep flaring up and then getting better. She has a rashes on her back, backs of knees, inside of elbows, and often on her forehead. And the back of her head and neck seem to itch her a lot-they feel dry, but don't look bad. We've treated the yeast... got much better... cradle cap is now completely gone!

That's about where we're at. My ND's reintro sheet says to wait 2 weeks after a reaction before trying a new food. Sounds like folks aren't waiting that long. Hmm.

Deva-Where does your son have rashes besides under bellybutton? My ND said my DD's rash on her back looked like tinea (ringworm) but I don't think it is. Good topicals for tinea are tea tree & coconut oil. Don't know if you can do those.

[DevaMajka]

Welcome! Sorry you have to be here, but glad for the company

I totally understand giving in and trying the coffee. I hate when I "cheat" and then regret it afterwards.

How long have you been off all of those foods? Bummer about the corn Just curious- what made you suspicious of corn?
My first impulse is to say that you are still eating something that's a trigger. Do you have any other ideas other than corn?

Originally Posted by Huck

That's about where we're at. My ND's reintro sheet says to wait 2 weeks after a reaction before trying a new food. Sounds like folks aren't waiting that long. Hmm.

Deva-Where does your son have rashes besides under bellybutton? My ND said my DD's rash on her back looked like tinea (ringworm) but I don't think it is. Good topicals for tinea are tea tree & coconut oil. Don't know if you can do those.

I have never waited 2 weeks before adding a new food. I can't even seem to wait 4 days I need to get better at waiting. It's the ONLY way I'm going to figure this out!

Ds's rash is totally in his diaper area. His main, food related, rash is between his bellybutton and his penis. When it gets really bad (seemingly from sweet potato) his scrotum and the whole area gets bright sunburned red

The rash directly under his bellybutton is different. We took him to the clinic today, and that doc said it was ringworm, and prescribed something else (we were using canesten). That rash seems totally unrelated to food. I could try coconut oil. It is moderate in sals, but so is the cream I'm currently using. I even have some coconut oil- thanks for the tip

[Huck]

We've been off all of the foods I mentioned for 3 months. I'm also off all nightshades. I'm suspicious of corn b/c I'm a huge corn freak. I ate so much popcorn while pregnant. Ha, I'm also suspicious of dairy & soy (DH was intolerant of both as a babe). DS (3 yrs old) seems to have a problem with too much cow cheese. Goat seems okay. And suspicious of gluten as well. Sigh. Of the foods I'm eating, I guess I'd be most suspicious of bananas, trace amounts of corn in prepared foods, beef, and any suggestions...?

I keep wondering how you know if it's an environmental trigger. I KNOW her cheeks get much worse when wet & when she's stressed out from teething or in the car. I'm also suspicious of "tagless" labels (look up Carter's tagless rash for more info) & printing on t-shirts & inks.

Deva- does the rash under his bb have the central clearing characteristic of ringworm?

[DevaMajka]

Just a drive by posting (I only have a second before I have to hustle the kids to bed)-
I thought it would be fun for us all to list any known triggers, any foods known to be safe, and any foods that we strongly suspect to be either safe or unsafe.
Also, if you feel like it, mention if you've hit baseline yet or not.

Sure safe foods - black beans, quinoa, millet, sugar, sea salt, canola oil, corn-free baking powder, and soy lecithin (in the spray oil).
Probably safe- wheat, cheese, butter, a few tomato slices on sandwiches

Triggers (99% sure of these)- sweet potato, salicylates, banana, milk (but most likely not dairy, just the calcium in milk blocking magnesium).

We hit baseline for a day before I started adding stuff back.

[LisamommyRN]

Huck- welcome! Hope the thread helps you sort out what's going on. It seems like you've already done alot of work, and made alot of progress. Maybe you could try eliminating eggs? legumes? fish/shellfish? What do you eat alot of? Are you keeping a food diary? Maybe you could add pertinent environmental info, like what clothing DD is wearing?

DM- Kudos to you if you go the supps/food chemical route... that stuff is still over my head for now (and I have a heath science background, too!)

So we're definately back at baseline- about 10 days out from last exposure to a trigger, a little prolonged from new probiotics adjustment. But we've had 3 days of good poop, so I'm ready to indroduce a couple new foods tomorrow.

Our current safe list is:
chicken, eggs
sweet potato, carrot, kale, avocado
pears, apples, bananas, grapes/raisins
GF oats, quinoa
coffee, sugar, olive oil, sea salt

We tried/failed:
salmon
buckwheat
broccoli

Suspicious of:
corn
coconut
rice

Now- what to add?
I want to add things that I'm pretty sure will pass, cause I can't take another set back so soon. Unfortunately, all the foods I really want are not in that category. (Nuts, beans, tomatoes, chocolate, berries)
So I'm thinking asparagus, turkey, and mango.

oops... DH ready for bed... gotta go!

[DevaMajka]

Originally Posted by LisamommyRN

So we're definately back at baseline- about 10 days out from last exposure to a trigger, a little prolonged from new probiotics adjustment. But we've had 3 days of good poop, so I'm ready to indroduce a couple new foods tomorrow.

WooHoo!!!
I vote for adding the safe things. You don't want a fail again so soon! Maybe next time you can get a little more risky

DP convinced me to stick with my current path. I decided to test out starting with my original safe list (black beans, quinoa, millet) and add my multi, mag, and mo. And since I splurged on grilled cheese yesterday and his rash didn't get worse, I kept in bread, cheese, butter, and a couple tomato slices. His rash is actually looking great! Sooooo close to gone.

Huck- I'd definitely consider taking something else out. Unless you are suspecting an environmental trigger more? I'm not sure how you know...
I knew because I went to almost TED's early on (15ish foods). I'm not the patient sort. lol. His rash definitely came and went in relation to foods.

His rash under his bellybutton (not the rash I am talking about above) was looking skin colored in the middle. After using canesten for 2 weeks, about half of it is light, and there's a dark edge on the top of it. It's not a whole border, so not textbook, I guess. But I really really hope it's ringworm! Because then, I can get it to go away! It was really depressing when I thought it was food related (like his other rash)- it wasn't going away, so he seemed to be sensitive to everything!!

[Huck]

Lisa-Congrats on baseline!! We are already avoiding eggs (forgot to mention). I haven't been doing a food diary, but I just started right now. I included what I ate, what DD ate, what her rash looked like, what we did, and I guess I should include what her poop looked like. Anything else to include??

I think I will try avoiding legumes to see if anything changes.

I took all tagless clothing out of DD wardrobe starting 5/5. Also avoiding metal snaps unless they are nickel-free. I double rinse everything and use very little soap. Pretty sure it's not the laundry soap b/c her diaper area usually looks great & that has a lot of material/skin contact. I just invested in a bunch of organic clothing for her. Previously had mostly second hand things. Only use 100% cotton and wool.

Will finish posting later...