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Discussion Starter · #1 ·
So I've noticed our ranks around here are swelling it seems and thought maybe it was time for our own thread to share tips and tricks and successes and failures and all the fun that comes from nursing a food intolerant/food allergic child. Anyone care to join me?
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I'll start. As the siggie says, I'm Kerri. I'm breastfeeding an 8 month old food allergic and intolerant child. We have a host of non-IgE mediated food allergies as well as even more food intolerances. We're currently off diet after thinking we'd be weaning but are prepping food today and tomorrow to go back Monday for the longterm. I live on crookneck squash, turkey, pears, olive oil, sea salt, and pure cane sugar.
Ohm, and my one vice coffeee. We've been at this for the better part of 6 months.

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Discussion Starter · #13 ·
I was giving DD some probiotics, but got lazy
I just added quinoa to our diet, and discovered I hate the stuff. OH, and sucanat...Gonna have to go back to regular sugar of some sort
But I've got osme good recipes for quinoa flour so maybe that will help!

Zion: have you tried going top 8 free for a while? Its a pitb, but might help you get rid of the mucous. Then add back in and see what happns (though apparently, nursing moms aren't supposed to consume treenuts/peanuts and many avoid shellfish). I'd also keep a food diary. If its constant, then its probably something regularly in your diet, not constant, probably less regular in your diet. It might give you a starting point.
 

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Discussion Starter · #21 ·
Heat cna exacerbate eczema, so if DD has any at all and gets hot, it gets worse. As for cheating, I'm completely off my diet at the moment. Bad momma! I'm trialing a new elemental formula and trying to find a good turkey source - but I'm more procrastinating about it. I just hate the darned diet..I admit it. If she completely tolerates the elemental, I'll be considering weaning....Probably won't but it'll be tempting. If not, I have that extra push to force the diet (I'm always bad when sick and I've got a nasty cold ATM) HOwever, once I go back on, I don't cheat. It kills me, but I don't.
 

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Discussion Starter · #29 ·
For us, no but for you, it does sound like a good sign! For us, she's constipated when BFing w/o diet changes. When she's getting an allergen direct (like citric acid in benadryl) she has horrid diarrhea and much mroe frequent. When diet is perfect, well, I haven't seen that in so long I don't remember. BUt yours def. sounds good. Sounds like he's not completely there but is def. making improvements!!

Update on us: We're sooo much better! Quinoa is the miracle food that made my TED doable. DD slept last night....ALOT! I think her shortest stretch might have been2 hours, and the rest were 3 hour increments!! I'm sooo thrilled! HAng in there mamas - There is light at the end of the tunnel!

Mtn mama: I know some one who did something similar (She held food with both hands and if her practicioner could get hands apart, not a good food) and managed to successfully treat Idiopathic PUlminary Disease and send it into remission...Something Drs. said was absolutely impossible to do!
 

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Discussion Starter · #37 ·
So I lost quinoa yesterday
Totally bummed. I replaced it with pumpkin seeds. IF they don't work, then I'm seriously thinking about weaning as I can't find a safe magnesium supplement and I have to have a source in my diet. I've been at this since DD was 7 weeks old, and its getting tiring to constantly worry and guess. Poor kid has massive issues and days like today I think a safe formula would be better (If there is a safe one)
 

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Discussion Starter · #42 ·
Yay for spaghetti squash, let's just hope its a true pass. We should know by Friday. I'm over my weaning kick. I keep reminding myself that even if she wa son formula she'd still react to the other things she reacts to, and get food off the floor, etc. and our lives would still be changed forever by being touched by our little Squeakums, and then I wouldn't have boobs to cure all. It helps that I have spaghetti squash to provide bulk for me at the moment. I just need something easy and bulky like that (We gave up on pumpkin seeds b/c it was so time consuming and not filling). We're waiting on a new supplement for our magnesium needs, but feel much better this time. HOw's everyone else hanging in there??
 

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Discussion Starter · #44 ·
Welcome! Yes, some of us really live on 3,4,5 foods. Its not for fun, thats for sure. MOst of us started out eliminating 1 or 2 foods. For me, it was wheat first, then dairy, then I said the heck with it and went all out TED. I now know that DD reacts to: dairy, soy, wheat, corn, tomato, potato, avocado, citrus, millet, rice, quinoa, steel cut oats, and spaghetti squash. ANd thats just the start of it...But she is fairly rare. Many kids only have top 8 issues (dairy, wheat, soy, egg, citrus, fish/shellfish, peanuts, treenuts) or only have symptoms occasionally that can be tracked through a food diary (like my DS who has contact dermatitis to salad dressing??). I wouldn't go to a TED without definite need, and even though I *knew* we needed it, we probaly started earlier than would have been recommended (in my case, it was just intuition). Good luck and feel free to post questions or PM us (or at least me, I shouldn't speak for everyone LOL)
 

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Discussion Starter · #47 ·
misfidget: we're waiting to intro solids. I don't do rice cereal to begin wiht, and really won't now since DD is allergic/intolerant to rice. We're waiting until she's 12 months *theoretically* it may be before that, but we'll go with the GI and the allergist on that one, so 10 months at earliest since she's not seeing allergist until then. And I'll start with pears and squash, both cooked, since she seems to tolerate those best. And only while she's not reacting.
 

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Discussion Starter · #73 ·
Welcome everyone new! I've been avoiding the thread as I've been off diet for a couple weeks. We're going back though. BUt I think we're near to setting a limit for calling it finally. I've decided that teff and amaranth will be trialed and if we fail both, we'll call it quits. THis sounds great in theory, but I cry just thinking about the reality. DD is a boob tick so we'll seee if it even works. We're planning to trial the formula as soon as I can take a few days away to spend with a bottle feeding expert (AKA greatgrandma) just so we know its an option. We're currently making all kinds of future plans (Fulltime RVing while following DH's work, etc.) that seem so impossible on a TED or even very strict ED, but then I think about carrying around tons of formula and think it sounds worse. I need a real boost. Anyone want to inspire me? The hardest part is giving up all my plans, dreams, expectations of nursing a toddler, and a preschooler, etc. Add to this my desire to get pregnant (not possible if I'm strictly TEDing) in 6-9 months, tandem nurse, etc. and it gets soo complicated and disheartening. I know DD will live no matter what, and that for ehr, formula isn't evil, its medical food. BUt taking away her comfort seems awful. Yesterday I let her suck on a piece of sugar cane (stupid me thinking it'd be the same as sugar). GUess you could call it our first real "solid". She sucked on it for a couple minutes and then reacted terribly. ^*%*&^% ARGH! AT least I had the boob...What about when I don't have it anymore?! Whew. I needed to get that all out to others who understand this.

Oh, the good news (I should focus on this): DD did gain some courtesy of my last rounds of dieting. She's 17 lbs. 5 ounces at 9 months AND her iron levels were PERFECT! Take that Mr. Doubtymystuffa Ped! My breastmilk can completely provide for my daughters unique and changing needs =P Even without a virgin gut. I had worried when she started finding crumbs to hoover it would negatively impact her ability to absorb iron, but I guess not as her level is just as good or slightly imrpoved from her last bllod draw just before 6 months.
 

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Discussion Starter · #96 ·
Haven't been around in a while. Welcome everyone! We thought we were weaning. We've been off diet for a while, but now we can't wean as she is definitely reacting to both elementals. Poor kidlet has major testing next week...A swallow study and a pHprobe. Her first hospital admission
I'm going back to a diet for her, though not positive what yet...I'm thinking quinoa and organic turkey but we'll see. Right now I have terrible dental issue that I may need to deal with before hand as I may need a liquid diet if the pain continues. Why do dentists cost so darned much?!?! Anyways, Kirkman has a good non dairy cultured probiotic. Even dairy free probiotics can be cultured on dairy FTR>
 

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Discussion Starter · #332 ·
Splunky- DD stopped sleeping, became crankier at home (She's a doll out and about where she can play to her audiences LOL), had really funky poop for an EBF baby and her weight gain started slowing. I started cutting at the first signs, and went TED after about 3 weeks of cutting w/o great success. It might be worth looking into at least. We also had touches of rashing/hives/allergy ring and shiners. We have no ige allergies, but lots of non-IgE.

And I guess you mamas can consider me done...I'll still check int, but DD is now fed medical food by g-tube due to FTT. I couldn't keep up my diet anymore and take care of my kids, myself, etc. I'm glad we made it to 1 (And we're still finishing weaning), but I don't regret moving her to the tube and medical food if it makes her feel better and grow better.
 
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