Should I continue ED?

[PeachBaby]

I feel caught in a catch 22 situation. I am starting to worry I am on the ED for too long and am creating *new* allergies because I may be becoming malnourished or not healing properly, setting myself up for a downward spiral. (Last night *I* got an allergic reaction, so shocked!) I've been eliminating since maybe April or so, but then for the past two weeks, I've had to cut out quite a bit. During these past 2 weeks, DS started to improve tremendously at first (finally!) but then got horribly worse (mostly in behavior and sleeplessness, although his red spots flared up too).

Whenever there is a reaction I try to pinpoint the problem food, but then I *always* start second-guessing, is it some other food? I have been journaling but only for the past 2 weeks, (but not in super detail -- eg. as to exactly what time, but I kind of write it out in order for the most part) but it is still hard to tell what the trouble foods are.

I am in a foreign country which makes it so hard (can't run down to my health food store). And I never was really one to buy from the internet, so I don't have any source of supplements, or probiotics, or any healing stuff that I trust (it's all in foreign language so I can't read ingredients). So I worry that I am not doing all I should be for DS. The only thing I have is I tried to look for natural sources of probiotics. I have found sauerkraut, and just posted re: kombucha but it has msg.

Question: If I am allergic to papaya (which I think was the cause of my allergic reaction last night - I got red lips and a mouth bubble blister), would that affect DS as well? He started improving 2 weeks ago, but then he gradually got worse, and now I am glad I started journaling. I detective worked and think it is the papaya I have been eating which I never thought I was allergic to before. As I ate it and recorded it over the past 2 weeks, it seemed to correlate with his gradual decline after greatly improving (beginning from 2 weeks ago)

But I always think, okay now I know what it is, try again (ED). But then, *always* it's an up and down ride, another allergy pops up..... so I worry that if I stay on the ED, I will just create (or find) another allergy ... and then have to drag on the ED which I know is not good since I really am starting to worry about my nutrition as well as my calories. My veins are literally popping out on my arms.

You mamas here are all so great, always helping out each other, and I know you all are going through your own challenges. I don't know that I need any advice from this post as I suspect it must be the papaya, but well, I just felt better sharing. So thank you for listening. I think I will just try again one more time. I am pretty sure it was the papaya. ....... I think. ..... I hope.

[mamafish9]

Hugs mama, what a hard road you have been on!

It sounds like you are almost there. It also sounds like you need to get more foods back in. Yes, EDs can create nutrient deficiencies and more reactions, especially if you are on them for too long. And yes, if you are reacting, your DS could definitely be reacting to that!!

I seem to recall you eat a ton of veggies, but fats are a challenge - what about protein? You can make your own fermented veggies, so that would give you a trustworthy source of probiotics (I haven't done this, but others here have, so hopefully they will chime in with how to do that!). Can you get chicken or other meat bones where you could make bone broth? That would be very healing and nutritious for both of you.

[Wugmama]

Have you identified any foods that you feel were causing your lo's issues? It is so hard to say. My TED did not go well. After cutting out various things off and on I did a 6 item TED for 17 days and didn't see ANY benefit. My milk almost dried up and baby had a big reaction to formula she had previously had just fine (I had been hospitalized for 2 days at age 12 days for a TIA and that was when we bought it and she had it).

I ended up seeing a chiro/chinese medicine doc who told me to just start eating (except nightshades) and got me on a bunch of gut healing measure that are commonly discussed on this forum. It took many months, but gradually saw improvement (she never got worse, either, once I was back eating everything). We eventually got to the point where she told me to also stop wheat and dairy and so did, then massive improvements (although before cutting those both out and much more did no good). Once baby was a cleaner slate (severe eczema was her issue) I could tell when I ate something if it caused eczema. We've been off gluten, diary, corn, eggs, nightshades and peas for quite some time and are doing well.

I felt like my TED was horrible and urge caution. I definitely wouldn't say it would be a wrong decision to stop it at this point and diversify as much as you can and do as many gut healing measures as possible.

Keep us updated.

Tracy

[Chinese Pistache]

I agree that EDs for too long with too few nutrients can cause more allergies. Do you have enough foods that you can do a 4 day rotation diet? That way you're less likely to get sensitized to a food.

FWIW, after my allergic dd was born, I was so reactive. I became allergic to adhesive, my mild nickel allergy went nuts, corn caused eczema and I got hives from pineapple. After lots of gut healing, time, and even through a second pregnancy, I do not have these reactions any more. Granted, I do avoid many foods because my baby is allergic, too (to some different foods), but I can eat a wide variety of foods, including corn and pineapple.

Shopping from the internet could really broaden your gut healing possibilities. Are there any specific obstacles you have wrt that?

[PeachBaby]

Thank you all so very, very much! Your support is so very comforting!

I am still having a reaction in another spot, although it's much less than my original reaction, and I'm wondering if it is still residual from the papaya or if it is from something I'm still eating. But DS's symptoms are going up and down within the course of a day. Some red spots have improved but he also got some new spots. : He also still wakes up crying thoughout the night as if uncomfortable. How long does it take on average for symptoms to go away once I stop eating the offending food? (To be honest, I did eat a small serving of canned salmon yesterday though, not from cheating, but I panicked that I wasn't getting any high protein source for DS for the past several days).

From this list of foods, does any jump out as being questionable?

Black Olives (in water, salt, and ferrous gluconate) - esp. if I eat a lot of it
Sweet potato (like if I eat too much which I started to do cause I'm so hungry all the time, sometimes like maybe 4 whole ones within a day)
Satoimo -it's kind of like a "potato" and reminds me of taro/poi (Hawaiian food) flavor
Sauerkraut (cabbage and salt, no preservatives, kept refrigerated)
Molasses
Onion
Nori (plain unflavored seaweed sheets)

These were what I ate within the past several days (along with other fresh vegetables that are probably okay and which I don't suspect). I stopped even all fruit for the time being. I was eating lots of fish, but I recently stopped eating fish about 5 days ago (with the exception of yesterday's serving) because I think DS is reacting to that. I stopped the papaya 3 days ago.

If none of these seem like they would be a problem, I will assume it is residual from the papaya or fish reaction.

If they all seem okay, I am thinking to return to eating them, wait maybe a day or so, and then to also start adding the following listed below. But I don't know that I want to wait to test for them individually. If things were going well, I would go slow and test, but I think I desperately need more nutrition and calories (yes, I need more protein and fat!), so do you think I could just go ahead with eating all of these? Or do you have any suggestions how to start incorporating them as quickly as possible? I think I want to try a 4 day rotation diet. I will look up how to do that.

Lentils
Kidney beans
Garbanzo beans (chickpeas)
Octopus
Squid
Tapioca
Milllet
Quinoa
Olive oil
Palm Oil (from Malaysia, it says 100% palm fruits oil, but I still worry about the possiblity of it being adulterated)

I have something like oxtail, but haven't used it because DS reacts to all meats (red meat, chicken, and lamb is what I tried) I found out the Japanese people don't like grassfed beef, they only like grainfed beef, so they don't sell grassfed beef at my local supermarket. Do you think I could still make oxtail soup, refrigerate it, then skim off the fat layer? Or would the protein particles from the offending grains still be in the soupy liquidy part and still cause a reaction?

Oh, gut healing is a good reminder! Yes I am checking out the discussions on that.

I also will consider buying from the internet (various reasons why I don't usually buy from the internet, but one big one is that I have no idea where to start (i.e, who to trust for a really good source). I want to get a good multivitamin (no dairy, wheat, corn, soy, rice, etc). I am EBF. Any advice you may have would be greatly appreciated!

Thank you! And hugs from a grateful mama!

[PeachBaby]

Aaaauuuugh, I can't be strong anymore, not even for my DS. I ate lentil, kidney beans, garbanzo beans, and octopus. i am so worried he is not getting any protein. Since yesterday he sometimes had a dryish sound to his voice and that is freaking me out. Am I causing that by not eating proper nutrients? DS had a bit of blood when he made poo a few hours ago and it hurt him to make the poo. maybe its still from the fish i had yesterday, or from the beans, i dont know. i dont know anything anymore. I just absolutely broke down and and yelled and all in front of DS too. This is driving me insane. And there's nobody here that can understand or help.

DH wants to give DS formula already because he sees how much we are struggling. Should I? I feel like the milk I am providing for DS is harming him slowly, little by little, anyway. Of course when DH suggested formula, I adamantly refused, but is there ever a point where maybe I do need to consider that?

I can't handle this anymore I need to know HOW to fix this and I can't.

[WuWei]

Consider reading, Formula for mom not baby!

Check Where to start? Help 101 and see how many of the healing alternative you have incorporated into your lifestyle.

There are many alternatives, not just formula/no formula. It will get better and easier.


Also, Blood in Infants stool, what worked for us!!



Pat

[Wugmama]

When my milk dropped dramatically (because I went on a TED) we supped w/formula but baby reacted severely to that. Then we got the expensive one that you can buy at the grocery store, nutramigen I think? It tasted terrible, she wouldn't drink it. then we got neocate. Our insurance didn't cover it so we went on craigslist and got some locally, cheaper than ordering it from the company. And she supped w/that. She was 5 months old and I was pretty shook up about it at the time. But you know what? She is 21 months now and still nursing. It was really no big deal, and helped to ensure she was getting enough calories.

Definitely check out Pat's links.



Tracy

[PeachBaby]

Update

Thank you Pat and Tracy for your encouraging words and guidance!

I have been reading up a lot on all the resources and that has been so helpful!

So to update, the past 2 weeks has been a real roller coaster ride! Immediately after my last post, he started to clear up on all his symptoms, yay! So I thought, okay, we can do this! Then several days later, *I* made a huge mistake, ate something wrong (unknowingly, of course), and he immediately got the worst ever. Since then, I've been working to fix that, and he'd get better, then not, then better, then not,..... Right now, he is finally doing much better, as long as I can manage to keep it up.

Finally got him allergy tested for IgE and IgG for a dozen items and found out to my great suprise that he is not allergic/intolerant to any of them. So I guess he must be getting all his reactions from my food allergies/intolerances. I took an allergy test also and will get my results next week.

During these past 2 weeks, it seems as if I am getting more allergic to things . Sometimes I'll be eating a food I have (or thought I have been) okay with, but then my palate starts to get blistery/bubbly/rough. This has never happened before (except for shellfish). I think I am creating more allergies!? Because of this, I've had to stop eating sweet potato, satoimo (taro), sauerkraut, olives, .... and I'm sure I also felt it when I ate peach, and maybe a few more foods.

So I'm in a pickle. My heavy carbs that were sustaining my hunger are gone. And my probiotic source is gone. As is my fat source.

To compensate, I finally found out how to get grassfed beef. But it doesn't have a lot of fat. But at least it is now my protein source, since I haven't felt safe with fish, nuts, or beans. I also took the plunge with the palm oil I bought and, cross my fingers, I hope that turns out to be a safe food.

Probiotics is what I am working on now. I e-mailed a kefir source, but have gotten no response. I was hoping to get a non-dairy source of kefir as well as information about how to do it. Does anyone know who is still active in distributing kefir (internationally)? Thanks!

[Wugmama]

That sounds really rough. I know for myself, even though we have our list down pat of what not to eat and have for a year now I still screw up at times because ingredients can be so hidden, especially gluten and corn.

I really wonder if you shouldn't try to go a rotation diet route. Have you read about those? It is where you eat a really wide variety of foods (not including any that you know you really react badly to) but rotate so that any one food family is only eaten every 4 days. I have one at home someone gave me (a print out) but I've never done it. I know Kathy (kjbrown) has two children on them, different ones, and has for many months and has had good results. You could do that while continuing gut healing measures and be getting all the good nutrients and minerals found in a variety of foods which will help your healing and keep up your health and milk supply. You can't afford to keep losing foods.

I haven't gotten my baby tested yet. She will be 2 in Sept. I know her issues are highly related to mine. I had really bad eczema on my hands and legs, really bad, turned into staph infections. I had NEVER had eczema until I got pg, and it just got worse w/every pg. From what I understand though the intolerances are difficult to test for. Our mainstream allergist swears they are impossible to test for.

Have you supped the baby w/neocate? Try looking on your local craigslist to see if you can pick up a small amount to try.

Are you taking any supps? Are they free from the common allergens? Are you taking LIQUID CLO? Yucky and expensive but it has truly, truly been a godsend for us and I'm so greatful for it.

Thanks for the update, I've been thinkin' 'bout you and your lo.



Tracy

[WuWei]

Where are you located? Someone might be able to send you water kefir grains.


Pat

[kjbrown92]

Is he having any solids himself? Or is he only breastfed? I thought the IgG tests weren't accurate for a baby who hasn't had the solids yet... at least through the ones here in the states.

Do you know FOR SURE any foods that he/you react to?

I still say take out the top 4 (dairy, gluten, soy, corn) and anything else you're pretty sure he reacts to. And if you are getting IgE responses (which it sounds like you are) take out the top 8. Then rotate whatever else you can find.

Sample (my DS except I left out all nuts, shellfish, rice, white potato and probably some others):

Day 1
sorghum (sorghum syrup and sorghum flour)
tapioca (pearls and flour)
beef
tomato
lettuce
carrots (can you get yourself a juicer?)
celery
strawberry
date
grape
mango
coconut (coconut flour, coconut oil, coconut milk, etc.)
flaxseed
honey

Day 2
buckwheat
chicken
cinnamon
garlic
ginger
banana
blueberry
avocado
pineapple
broccoli
cabbage/saurkraut
cauliflower
brussel sprouts

Day 3
aspargis
lima bean
kidney bean
navy bean
pork
duck
onion
radish
blackberry
raspberry
peach
plum
cherry
apricot
cottonseed
oregano

Day 4
millet
beet
cucumber
spinach
squash
cantaloupe
honeydew melon
watermelon
olive
pumpkin
nutmeg
sesame
sunflower
vanilla

My DS has been on it for over a year (though he can't have chicken or carrots; I added them so you could see where they go).

[PeachBaby]

Thank you all for responding! What would I do without you mamas helping me!


While I was doing my reading, I considered both the rotation diet and the SCD. They both sound like they could be helpful, so I am trying to implement both. The SCD seems to be helping both of us, but at the same time, I think yes, we do need to rotate the foods more, but I'm already so limited in what I can eat, I don't know if there are enough foods to rotate. Thank you Kathy for the sample rotation diet, that is very helpful; I had been wondering about seeing someone's sample diet. When I get my allergy test results next week, I will be able to see if I can add any of the tested items back in.

I am in Japan. I think being in a foreign country is so overwhelming when I have this allergy issue to deal with. I have no idea where to start to look for formula that I can trust. I tried the craigslist here for other baby things before but it is barely active, so I am sure there would be no formula. The other option I see is getting the ones they sell here, but it would all be in Japanese, so I feel so insecure, not knowing how I can translate the ingredients or trust that it translates correctly. Same goes for supplements. I have no idea what to take, so I am currently taking none. If I suspect DS reacts to fish, is it safe to take CLO?

I have read here that intolerances/allergy testing may not be so accurate, but I had no idea about the IgG test not being accurate for a baby not yet eating solids. So maybe DS does have intolerances but it just didn't show up. DS is still ebf, but he is starting to look skinnier I think, so I wonder if my milk is not providing him with enough fats and protein.

I myself cannot tolerate wheat, dairy, or shellfish. I also recently got reactions to papaya, prunes, sweet potato, taro and maybe pumpkin?, sauerkkraut, sunflower seeds, squid and/or octopus, coconut, and maybe more. I guess I am trying to stay away from the top 8 allergens too.

DS seems to react to beef (although still trying to determine if this grassfed beef is okay for him), chicken, lamb, beans, avocado, dairy, fish, prune, egg, soy, beans, coconut, shellfish, rice, flax seed, and maybe grains (quinoa, millet?), tapioca or molasses?,

Anyway, so I tried to make a list of what foods we tolerate and can find here at our grocery.

PRO:
grassfed beef

FAT:
palm oil

VEG:
zucchini
cauliflower
mushroom
carrot
onion
squash
asparagus
cucumber
leek
broccoli
parsley
canned beets
frozen peas (still testing to see if okay)
leafy greens (spinach, mizuna, shungiku, pak choy, etc.)

SEASONING/SPICES:
sea salt
black pepper
fresh herbs
fresh garlic
fresh ginger

FRUIT:
blueberries
cherries
grapes
apple

* * * * * * * * * * * * * * *

Other possible options I want to test for soon (but am not sure I should for all) include:
olive oil (I think I just got a slight reaction to olives)
coconut oil (also had a reaction to coconut meat)
grapeseed oil
sesame oil (I worry about nuts and seeds)
sunflower oil (I had a mouth blister reaction to sunflower seeds I think)
liver/organ (DS may have reacted to)
cauliflower
celery
dates
honey
more fruit
nightshades (eggplant, tomato, bell pepper, potato)

Grains, starchy CHO seem to give us both problems. But I get sooooooo hungry without my carbs.

[FireWithin]

After two years of a very strict diet for my son, I started to see reactions, such as hives from peaches. I started to react to other foods with sulfur and sals.

We've begun to fight back with supplements. So far, I've gotten stone fruits, eggs, lentils and black beans back.

I started taking the following in hopes of helping that specific detox path.

high quality B complex (thorne) for all the Bs, but especially folate, B6, B12
Molybdenum (this was a biggie for me)
epsom salt baths (for the sulfate)

what was happening to me was I stopped being able to convert sulfur foods to sulfate, AND I didn't (or still don't) have enough sulfate in my body to help handle sals foods. (If I said this wrong, someone please chime in)

I think it is very important to start taking supps to help your depleted body.

[PeachBaby]

Thank you for your reply Mammo2Sammo! Yes, I am starting to look online for what supplements to take. And it sounds so hopeful that you are able to reintroduce foods back into your diet. Way to go!