Anyone else need an ED support thread?

[DevaMajka]

I just thought I'd put this out there. It seems like everyone else has an easier time on ED's than I do, but I can't be *that* much more indulgent than everyone else!
I'm not sure how many others are on an ED or TED, or starting one soon. But any interest in a support thread?

[LisamommyRN]

I do! I do!
I've been doing varying degrees of elimination now for 7 weeks now, trying to figure out why DS2 is having bloody, mucousy poops.
I think we found a baseline, and I started adding foods back in. Now there's a little backsliding in the poop department, and I'm unsure whether we were'nt at a stable baseline, or whether he's reacting to somthing I added... I'm afraid I muddied the water after two weeks of a strict TED.
Sigh.
So yeah, I'll sub a support thread!

[DevaMajka]

awesome! Well, not that you need it but it's nice to have company.

How long were you at baseline? Do you think you added stuff too fast?
That's a bummer that you had a reaction.


I've successfully completed day 1 of my close-to-TED. woohoo!
Chicken (but not a lot), black beans, chickpeas, pear, apple, quinoa, millet, celery, cashews. And sea salt, canola oil, baking powder, and white sugar.
It wasn't too bad, really. I'm doing better than I have on prior ED's, even ones with more food options. Luckily, I can eat black beans all day without wanting to be sick!

DP isn't optimistic that we'll reach baseline. He thinks it's because we've thought before that we were so close to figuring it out, and we don't know much more now than we did then, except to confirm that sals are a problem.
Hopefully he's wrong! I'm so determined to stick with this!

[LisamommyRN]

Well, I guess it depends how I define baseline... his diapees were free of visible blood for 5 days before I added anything- but they were brownish-yellow and mucousy and tested positive for hidden blood. Then they started looking really great- yellow and seedy, but still positive for hidden blood. Now they're looking more mucousy again. So there were only 2 days of good-looking ones, and I haven't had a totally blood-free one yet. (But the hidden blood can persist at least two weeks after the obvious bleeding, as the gut heals, and I couldn't wait that long on the TED, my supply was really decreasing, and I was starting to feel really depleted.)
So if I define baseline as nio visible blood, we're still there. If I define it as sweet-smelling yellow seedy poops, we're having a reaction. The last foods I added were salmon, buckwheat, bananas, and kale. I'm going to drop the salmon and buckwheat for now, and move on- adding eggs, asparagus, and apples tomorrow. (I'm adding 3 or 4 foods every 4 days.)

Congrats on your first-day success! Do you suspect corn at all? If so, be careful with the canola oil and baking powder, I think. I was reading another thread- your plan is to keep it up for a week, then try the variety-nutrient approach? How old is your LO again? and the main sx is a rash?

[northerngirl]

Count me in! My dd 11 weeks today tested positive for blood in stool this past Monday. I have been strictly GF, DF for over a month and soy free, fish oil (dh has fish allergy) free for over a week. Before dd was born I had been mostly gf with sneaking some pizza 2x a month. I have a low gluten sensitivity. Just decided to take out nuts yesterday since I was eating a lot of them. Corn or eggs will be next I guess....I'm having a real hard time with figuring out what to eat and what to fix for meals for my dh and older dd. We only are eating chicken a couple times a week. This is coming from years of not eating meat. Ugh.
Dd has had mucus in her poop since near the beginning. She was having curds in the beginning as well. Now its liquid and varying amounts of mucus. She had acne that was really rough feeling for 3 weeks, but that is gone and her cheeks are pretty much smooth. She still has cradle cap on her head, behind ears, and in eyebrows. On her head seems to have lessened a bit.
Dr. doesn't think I need to resort to TED yet as dd is gaining well and sleeping well.
Are you ladies giving probiotics to your los? Are you taking them as well? I am in the market for a new brand that is allergy free. I usually take Metagenics Ultra Flora Plus DF but have since stopped. I saw that Jarrow has a top allergen free one, in my price range....dd is waking....

[DevaMajka]

Originally Posted by LisamommyRN

So if I define baseline as nio visible blood, we're still there. If I define it as sweet-smelling yellow seedy poops, we're having a reaction. The last foods I added were salmon, buckwheat, bananas, and kale. I'm going to drop the salmon and buckwheat for now, and move on- adding eggs, asparagus, and apples tomorrow. (I'm adding 3 or 4 foods every 4 days.)

Hmmm...from what I've read, I'd count mucousy poop as a reaction. (which reminds me, I need to go back to when ds had mucousy poop and see if anything pops out at me now that I know more).
Eggs and apples will probably feel really good to add! It's probably a good idea to back off at least salmon for now. I really really hope you get to baseline again after 4 days with your new additions/subtractions.

Just to mention, I REALLY wish that I'd been patient enough to wait for a full 4 days of baseline (well, we've never been there, but a full 4 days of close to baseline) before I added more foods. I don't know if it would have made a difference, but I hate feeling the "coulda woulda shoulda." kwim? This whole ED thing is really messing with my relationship with food!

Sorry- cable guy is here to install free cable- I have more to respond to- back soon

[DevaMajka]

Originally Posted by LisamommyRN

Congrats on your first-day success! Do you suspect corn at all? If so, be careful with the canola oil and baking powder, I think. I was reading another thread- your plan is to keep it up for a week, then try the variety-nutrient approach? How old is your LO again? and the main sx is a rash?

I've never specifically suspected corn. It doesn't really fit the timeline, but anything is possible. lol. I do have corn free baking powder, but I totally didn't think about the canola oil. Hmmm... maybe I'll try olive oil instead.
eta- I was going to say that I was totally corn free for a long time, but I was using canola oil the whole time. hmmm...

I think I'll give it to the end of May, max (just to give me time to change it up if necessary). If we're not at baseline by then, then yep, I'm going to just try a widely varied diet. But I'm hopeful- his rash is improved today.
Ds's symptoms are a rash in his diaper area, and sleep problems (that really only happens with lots of sals though). And frequent urination, but I'm not sure if that's a symptom or just normal for him. He had mucousy poo in the beginning, but hasn't since, even on my "eat everything" week.

Originally Posted by northerngirl

I'm having a real hard time with figuring out what to eat and what to fix for meals for my dh and older dd. We only are eating chicken a couple times a week. This is coming from years of not eating meat. Ugh.

I'm feelin' ya on both counts. It's hard to cook for dp and ds1. It's expecially hard when I can't taste stuff to see if the seasonings are right. lol. I just cook our old favorites for them, usually. Or stuff that's so easy I can't mess it up.
We used to be largely animal-product free. We still ate meat when out if we wanted, and occasionally bought eggs and cheese. But now I'm eating it way more. I have a vegan friend who has expressed her disappointment in my choice, so that makes it harder. I'm hoping to decrease the animal products again once I add more stuff in.

Are you ladies giving probiotics to your los? Are you taking them as well? I am in the market for a new brand that is allergy free. I usually take Metagenics Ultra Flora Plus DF but have since stopped. I saw that Jarrow has a top allergen free one, in my price range....dd is waking....

I am giving a probiotic to ds. It just now ocurred to me that it's not allergen free- I got it when I was sure that dairy was fine. bah.

[LisamommyRN]

Northerngirl - welcome to the club! I started out eliminating this and that, like you're describing, but I got impatient- and I wasn't sure how long the doctors would "let" me try to figure it out before pushing formula. That's why I went the TED route... I just wasn't seeing improvement after eliminating the top 8 plus citrus, tomatoes, etc etc. Turns out maybe I wasn't being as strict as I thought I was- my (progesterone-only) BCP has lactose and cornstarch. So I quit that.
My LO is also gaining and sleeping, thank goodness.
I'm giving Culturelle to both of us right now, but the more I read here, the more inadequate I think this is. I looked at the HFS today, and saw Jarrow brand non-allergenic, 5 billion CFUs... so I'm thinking about that. It's a pain in the butt, though, to make sure he gets a little extra BM in a bottle just for that. (I mix in about an ounce of "fresh" BM, let cool to room temp, 'cause I'm worried about killing the probiotics with warm milk. Does that even make sense?)
As far as cooking- I've been roasting whole chickens for myself, and throwing a few sweet potatoes in there at the same time. And I make a whole pot of quinoa at a time. I do all this ahead of time, so at meal time, I'm just cooking for the rest of the fam, and re-heating my own food- and maybe steaming a veggie for myself. (Funny, though, that DS1 now want's whatever I'm eating, 'cause it's different, even though he would never eat kale otherwise!) Once or twice a week, everyone eats what I eat, for simplicity, and to keep me company. But yeah, the not tasting, and not licking fingers while I'm cooking- tricky.

So DevaMajka, I am counting the mucousy poop as a reaction, especially since it got even a little worse today. So where to go from here? I'm really reluctant to go back a step and wait til we're totally at baseline, even though that's probably the "best" course of action. That would leave me eating only 7 foods, though, for another week or so. I'm just not feeling that's healthy.

So to organize my thoughts a little:
The poops started to get visibly better on May 10, best by May 13. The last thing I eliminated before this was the BCP on May 6. So on the 5th BCP-free day I saw improvement, and on the 8th day everything looked great. (Though still guiac positive.)
I added quinoa, grapes, and avocado on May 8, these I consider safe, since poops continued to improve from there.
Stools started to lood worse on May 14, the 3rd day of salmon, buckwheat, banana, and kale.
So if I'm looking at this right, I'll see a reaction about 3 days after and exposure, and can expect resolution about a week after.
Confounding factors may be: inconsistent use of probiotics, delayed reaction from previously added foods, DS drinking EBM from up to three days previous.

So today I added eggs, apples, and GF oatmeal (for its galactagogue properties). If stools do not improve over the next 3 days (Mon, tues, wed), I will toss all the new foods out, and go back to the 7 safe foods for a week. At least I will have had a little nutrient variety for a few more days.

Anyway, I hear you about the messed up relationship with food- I simultaneously feel completely detached from food (we went to a picnic saturday, and it wasn't even hard not to eat anything) and completely obsessed (what food should I add next to maximize my micro-nutrient diversity). Oh, and I wasn't the patient one- my DH said- you've done it this long, what's another 3 days... finish what you start. I wouldn't have been able to deal with him if I stopped short and he was right in the end. I hate being told "I told you so," YK?

Re: corn- it's in everything. Have you looked at cornallergens.com? They have a HUGE list of ingredients that "may" be derived from corn. It's really crazy.

And don't beat yourself up about the probiotics... that's why its great we're all sharing experiences, to pick up on things like that. Great to hear the rash improved!

Sorry this turned out be so long... needed to get everything out to clarify it in my head.
Thanks for listening!

[mamafish9]

Just popping in, with sympathy - been there, done that, NOT fun. Hugs, mamas!

Lisa - for probiotics, just wet your finger, dip it in probiotic powder, and wipe it in your LO's mouth. Easy, no need to put it in a bottle. I agree, get a better source than culturelle - for starters, culturelle has FOS/inulin, which lots of kids react badly to (I think theirs is derived from chickory root). It also only has one strain of probiotic, and not one babies most need. I'd suggest pharmax infant probiotics for a babe as little as yours. You definitely want a high bifido infant strain (I think Klaire labs makes one too).

[DevaMajka]

Sympathy is a good thing!!

I'm glad to see that this thread is helpful I know I really needed it!

How's everyone doing today? And I'm not sure I gave an appropriate welcome and hello to northerngirl

I'm with LisamommyRN- I started out taking out this and that, but I felt so impatient that I decided to take out loads of stuff pretty quickly. Obviously, my approach didn't get us answers fast, but I wasn't down to a TED until very recently. I think our situation is compounded by the fact that ds is reacting to food chemicals, so it makes it really hard to figure out through food journaling, kwim? I'm guessing that he is also reacting to one or more whole foods, too. Don't know why- just a hunch.

I'm doing ok. Just a little down. At least I'm not having a hard time sticking to the almost-ted. His rash improved then got worse yesterday, and is about the same today. His sleep was better last night though, so that's good.

Originally Posted by LisamommyRN

Stools started to lood worse on May 14, the 3rd day of salmon, buckwheat, banana, and kale.
So if I'm looking at this right, I'll see a reaction about 3 days after and exposure, and can expect resolution about a week after.
Confounding factors may be: inconsistent use of probiotics, delayed reaction from previously added foods, DS drinking EBM from up to three days previous.

So today I added eggs, apples, and GF oatmeal (for its galactagogue properties). If stools do not improve over the next 3 days (Mon, tues, wed), I will toss all the new foods out, and go back to the 7 safe foods for a week. At least I will have had a little nutrient variety for a few more days.

Did you decide to take out buckwheat and salmon? I think you have a good plan- see what happens with eggs, apples, and oatmeal and if you don't see an improvement, go back to the safe foods. It totally sucks.
But if you do that, and you get back to baseline, you'll be able to add foods faster, instead of waffling back and forth between 7 foods and 15 foods (which is what I keep doing. lol.)

[kjbrown92]

Originally Posted by DevaMajka

I've successfully completed day 1 of my close-to-TED. woohoo!
Chicken (but not a lot), black beans, chickpeas, pear, apple, quinoa, millet, celery, cashews. And sea salt, canola oil, baking powder, and white sugar.

Originally Posted by DevaMajka

I've never specifically suspected corn. It doesn't really fit the timeline, but anything is possible. lol. I do have corn free baking powder, but I totally didn't think about the canola oil. Hmmm... maybe I'll try olive oil instead.
eta- I was going to say that I was totally corn free for a long time, but I was using canola oil the whole time. hmmm....

I was going to ask about corn in the baking powder too... what kind of "corn-free" baking powder do you have? Because if it's the one made with potato, then add potato onto your list that you can have. Remember when you're on any ED, that if you have a food that you're eating, eat a lot of it, especially if you're nursing, to make sure you're getting enough fat and calories.

What's the connection between canola and corn? I've never heard of it and we're corn-free here, and haven't reacted to it yet. We only use canola and olive oil. And DD2 reacts to minute amounts of corn, so I'm figuring canola is safe for us.

[LisamommyRN]

mamafish- thanks for the probiotics recs, i'll look into them.
kathy- i thought canola oil could be cc with corn, but i could be wrong...
devamajka- i did take out the salmon and buckwheat. if they are the culprits, i should see improvement by... thursday? (left in bananas and kale- low suspicion and good nutrients)

how'd everyone's diets go today?
i enjoyed another egg-kale "omelet." poops are still mucousy and stinky.

just had an almost magical evening getting both LO's down to sleep- for the moment at least, i feel like i have it all together

[DevaMajka]

Yay for the good evening!! That's awesome

Originally Posted by kjbrown92

I was going to ask about corn in the baking powder too... what kind of "corn-free" baking powder do you have? Because if it's the one made with potato, then add potato onto your list that you can have.

The ingredients are rice starch, mono calcium phosphate, baking soda. (I didn't look up mono calcium phosphate- sigh. When will I ever learn? Hopefully it's nothing bad!)

I've done well sticking to my ED (what's it been, 3 days? except I forgot that I had decaf on the first day. So 2 days.) But ds's rash has worsened again. crud crud crud. I'm giving it another day, and if it gets better then worse again, I'm going to switch it up. He was is his diaper for about an hour today, so maybe that contributed?
His rash isn't even that bad. But it gets itchy when I'm not on an ED, and it just seems like if I could determine some culprits, I could have a more varied diet without worrying that everything I eat is THE thing that triggers it.

Either it's something that I've assumed to be safe for a while, or it has more to do with nutrients. I'm at the point now that I really want to TED it until I'm out of options, because once I stop, I don't want to do it again, kwim?

[kjbrown92]

Originally Posted by DevaMajka

The ingredients are rice starch, mono calcium phosphate, baking soda. (I didn't look up mono calcium phosphate- sigh. When will I ever learn? Hopefully it's nothing bad!)

Just change one thing at a time, or you're going to go crazy!
What's the brand of baking powder? It would be nice not to have to make my own all the time (though rice is on rotation for DS, so I still wouldn't be able to use it all the time).

[DevaMajka]

Originally Posted by kjbrown92

Just change one thing at a time, or you're going to go crazy!

Definitely good advice! I'm glad you said it, because it's been in the back of my mind to just change everything. And that's not worked for me in the past, so... lol. See, this thread has been good for me. It makes me think twice about rationalizing a new food (I'm the queen of rationalization. But my reasons tend to make sense only to me )

The baking powder is Baker's Supply House Organic Baking Powder. It's a local brand, I believe. But I'd be more than happy to buy a jar and send it to you My regular grocery store carries it.

[LisamommyRN]

So DS's poops are still mucousy today, but according to past precident, I shouldn't expect improvement til at least Thursday. So I'm trying to just acknowledge each one and move on.
I ordered the Pharmax neonatal for DS, and the maintenance ones for me, should arrive in a few days.
This may be TMI, but now I'm having loose stools... GI bug? intolerance of my own? (I've never never never had poop problems- even while pregnant.)
The only thing I'm eating in quantity now that I don't in usual life is kale. Who knows.
All else is well.

[DevaMajka]

Kale does that to me, too, if I eat a lot of it. I've never known exactly how to interpret it, but it's happened more than once. It doesn't happen every time I have kale- it just seems to happen when I eat a LOT of it.

sorry, I had more to say, but ds2 is being fussy and crying, and I need to cook dinner. And I just found out my dog has cancer. bah.

eta, ds2 just smashed his fingers in a drawer, so I'm nak.

Lisamommy- just 2 more days, and hopefully you see an improvement! Waiting is hard!

I'm doing well, ED-wise. ds's rash has looked good all day, and seems to continue to improve, whereas the last few days it got worse as the day progressed. I'm almost afraid to say what we've eaten today
We've eaten black beans, quinoa millet waffles, and canola oil and sea salt on the black beans. Oh, and somehow ds managed to get a chicken bone out of the trash and was gnawing on it. I was right there, but his back was turned- I thought he just had a toy. The trash can is on the other side of the gate! I had no idea he could even reach it- he somehow got it knocked over, then grabbed the bone. This child is a handful, I tell ya!
Anyway, I know that's not a good diet, but it was just for today, just to see if his rash would get worse through the day or not. We'll add something tomorrow.

I went through my food journal, and there were a few weeks in a row where his rash was good except for a few reactions that I'm now sure were from Bragg's soy sauce. The foods I ate a lot of during those weeks are:
rice (in lots of variations- bread, cereal, milk, cakes), eggs, mozzarella cheese, butter, banana, ground flax, pear, cashews, black beans, carrots, green beans.
So I'm going to add one of those tomorrow, or maybe chicken. Hopefully I pick the right one!

[northerngirl]

So I finally got some probiotics from my hfs yesterday, Floragen 3. Looks safe, no dairy. Put the call into dd's dr to get me a code to order the Klaire infant probiotic. Anyone know how much that costs? When I was telling the nurse about that I needed an authorization code to order it from this website, I thought, she must think I am crazy. She said they do have any at the hfs?
We had her on the pharmax but a while after giving it to her she spits up and I think one time vomited. She never spits up, so I attributed it to the pharmax.
I also got myself some more digestive enzymes since I had run out, source naturals brand, looks safe. I am getting really frustrated bc I have been so gassy (not burping). Geez. Last night dh said did the dog fart, no that was me. Does this mean (I) am eating something that I am intolerant to? I've also been having these moments when I feel real dizzy for a second, happens when I'm sitting or standing. Maybe I'm just dehydrated.....
Dd's poop still has mucus. Yellowish though.
Bought some ground turkey at our coop and I have no idea what I'm going to do with it. Never had it before. Trying to branch out a bit. Suggestions?
Dd is waking...

[LisamommyRN]

turkey burgers, turkey meatballs, turkey taco meat... basically I use it any way I'd use ground beef. Just don't expect to be fooled by the results. And FYI, the lower fat content means it can dry out easily, so don't overcook.
We still have mucous poop over here, too. It can sure take it's time, huh?

[DevaMajka]

Originally Posted by northerngirl

I am getting really frustrated bc I have been so gassy (not burping). Geez. Last night dh said did the dog fart, no that was me. Does this mean (I) am eating something that I am intolerant to?

I've asked about that before, and it seems like the answer is "it depends" lol. Gas is really normal- I guess it's typical for people to pass gas like 20 times a day or somesuch. I did read that it could be a problem if it's stinky, though.
Are you eating more beans, cabbage or other gassy foods? Those cause gas because many people don't have enough enzymes to digest them completely. There's bacteria that eat what hasn't been digested, and then THEY produce gas.
Or I've read that it could be a specific combo of foods. Or something yeast related.

Dd's poop still has mucus. Yellowish though.

Bummer about the mucous How long have you been on your current ED?
Is yellow an improvement? If so, that sounds like a good sign!