I know you may not want to use the epi but the epi is very safe.  Anaphylaxis (a systemic reaction) that is left untreated is potentially deadly so I hope you are able to give the epi if your child needs it.  It is a big pain in the butt to have to go to the ER by ambulance (which is how you should go--not to urgent care becuase they don't have the safe life saving equip ERs do).  You should call 911 if you epi. 

Here is a link to a sample emergency action plan.

Plans vary a bit but this is an average plan.

http://www.foodallergy.org/document.doc?id=234

Your allergist should have provided you with a written plan and the fact that he did not is a big red flag.

For us our general rule of thumb is one symptom, Benedryl, two or more symptoms Epi. 

If asthma flares and there is know ingestion, Epi. 

If after Benedryl, the single symptom does not improve, I'm on the phone with urgent care getting advice on the next step.

Again, experience will guide you on this over time.  It is so hard with babies.  They can not tell you anything.  It was huge when my DD could start to tell me what she was feeling.  So, if in doubt if something else is going on, always Epi.  Over time I got to read my DD's expressions and her behavior and I knew what was going on.  My DD's anaphylaxis is different depending on what allergen she ingested.  Certain allergens for her cause immediate stomach pain.  Others start with itchiness. 

Follow your allergists suggestions and trust your instincts.  Mother's instincts are typically right!

You guys seriously rock!

QuoteI use to start from tomatoes....ummm, really did not have to start there - LOL.  Now I mix some cans of crushed tomatoes, some diced tomatoes, and tomato paste (for me they have to be plain, no herbs, or spices, etc....so there is no garlic).

I think I have to start with tomatoes only, it seemed like all of the cans of crushed tomatoes in Whole Foods had cross contamination warnings for Dairy. Grrr…I may have to hunt down a good reliable brand. Thank you for the tips. I feel like printing them off and putting them in my kitchen!

Hezzier, thank you for the link! I'm going to check it out.

QuoteAs people said, testing by itself can't diagnose a food allergy.  A person can test positive and not be allergic and can test negative and be very allergic.

We met with her allergist today and he said nearly this exact same thing. He said keep her away from soy, keep her on a very restricted diet and because her reaction to soy seems to be so severe that I can use her Epipens liberally. (Personally, I think he's a good doctor and we're in the near Stanford and that's where he went to med school. He also suggested that there is a child allergy study going on at Packard Children's Hospital that I could opt to include my daughter in but I don't know how comfortable I feel about that because she's so young. I just don't know, my knowledge of food allergies still feels severely limited.)

The items that I've had her blood tested for are ones that I suspect her to be allergic to based upon my consuming them, breastfeeding her and her having either a skin or GI reaction. When she had her first skin test (which feel like ages ago now!) I strongly suspected dairy, soy and peanuts. Nothing else. I have a 2 year old, we were eating lots of kid friendly foods, PB&J, Greek Yogurt, cheeses (cheese used to be one of my primary food groups) and my poor baby DD was having bowel movements constantly. I couldn't figure out what was going on. Her pedi just told me that some babies poop a lot. Ooooooookay. After 6 months I had figured out the correlation of my diet and her near immediate reactions and made an appointment with an allergist on my own and he did the skin test. I was floored that only Dairy was the ONLY positive because I KNEW that when I cheated and ate something that I suspected was not okay, like a soy frap, then she'd had a GI reaction. The hives and itchiness are a more recent symptom, or maybe I'm looking for them now, I don't know.

Breastfeeding her has been a blessing because I'm sort of doing allergy testing on her to a degree without having to directly expose her to anything. However, her allergist said today that I can give her Neocate Jr. so I can finally (FINALLY!) stop breastfeeding her. I want her to receive the nutrition that she needs and I just don't know how I can accomplish that when I can't give her formula or put her on milk. Apparently Neocate is the answer to that so I ordered some today and Amazon is delivering it tomorrow. Today he also said that we'll do more testing on her in a year, not anytime soon. In the meantime, I need to stick to fruits, veggies, chicken, beef, rice, pasta and black beans. I asked if I could try to give her some coconut stuff and he said I could VERY cautiously try to. I'm too afraid to do it though. I just need to adapt to what her body can accept and stop trying to add for the time being. He was pretty firm with making sure that I understood that if her body is saying she can't handle it, then she can't handle it. Soy is out. Dairy is out. Eggs are out (I tried to give her eggs 2 - 3 months ago, because that's what you do with babies and we ended up in Urgent Care because she started raspy breathing/coughing after I gave her eggs, plain eggs.) Nuts are only out because of the blood test but you don't really give a baby nuts anyway, so that one is kind of a wash anyway.

I'm really conscious about what I feed my older daughter especially, we do almost exclusively organic everything, I try to not buy anything in cans because of BPA, I'm super picky about meats, eggs and milk (when eggs and milk were still staples in our house) and try to do as local and fresh as possible (thankfully being in California makes that easier). But taking out dairy, eggs and nuts really limits what I can do. I was staying away from soy in general because of the hormonal aspect of it but it's the number one substitute for dairy but it doesn't even matter anyway because soy is out. I'm just going to learn how to do clean eating done right. I'll check out that cookbook you mentioned, thank you for the suggestion!

Btw, what is the general rule that you guys follow regarding epipens? I'm pretty liberal with Children's Benadryl, if hives appear at all I give her a dose of Benadryl, if she's itchy I let her itch unless she's REALLY itchy, then I do Benadryl. I've only done the Epipen that one time and it was really terrifying for the both of us. I don't want to ever give her another Epipen shot. That stuff is not for the faint hearted. My husband would have had a panic attack if it would have been him instead of me.

P.S. Sorry for the novel and thank you for reading it and all of your wonderful advice and wisdom!

You asked about clean eating.  I grew up eating natural, whole foods.  It was frustrating to find that many organic and natural food products were not safe for my child but he could eat what I grew up thinking of as 'junky brands' such as Nabisco.  Skittles are allergy-free for my son!  They are totally cr*p but they are safe as can be from a food allergy point of view. 

I tend to cook from scratch but if I have to choose between a safe brand that isn't so healthy and something with an allergen warning on it I'm going with the unhealthy food choice.  This happens most often when we are traveling or out and about without a snack and run into being out of the house longer than planned.  Usually I cook from scratch.  I still don't like junk food but DS has to eat and if he is hungry a safe option is important.

You got a lot of good info already.  As people said, testing by itself can't diagnose a food allergy.  A person can test positive and not be allergic and can test negative and be very allergic.

The examples you gave of her flaring after you having soy and nursing are concerning.  Hives from exposure through nursing means she is pretty sensitive!  However, I see most of the things you listed as examples are things with multiple ingredients so I think it would be hard to say for sure that soy is the cause.  It would be a lot more telling if you ate edamame or tofu by itself and she reacted.  When products have more than one ingredient it can be very tricky to find the cause of reactions.  I was convinced my son was allergic to a particular food when he was little and it turned out it wasn't that food at all. 

You said, 'Skin testing was with the first allergist. We're now onto a new one, he was the one that suggested blood testing. He's basically said that we need to wait until she's a little older (which was a few months ago) to do more accurate testing. He also told me that because she's so young she could very realistically develop more allergies.'

Testing when older doesn't mean it will be more accurate.  Testing has a high false positive rate.  If there are things you are avoiding based only on test results then you may be avoiding some things needlessly.  A good allergist will work with you to figure out what you really must avoid and what might be a false positive. 

As for 'she could develop more allergies' that is true of anyone.  But most people develop all of them that they are going to deal with by the age your daughter is already so I wouldn't worry about that now.  I'd worry about avoiding totally what you must avoid and figuring out if maybe you have some false positives. 

A very good cookbook that is almost completely top 8 free is 'The Whole Foods Cookbook' by Cybele Pascal.  She has two other cookbooks as well which are both great. 

I use this site for baked goods, pancakes, etc

http://artofdessert.blogspot.com/

Not everything is dairy free but often times she gives subs that you can use instead.  We've liked everything we've tried from this blog.

Subs for milk are hard.  I am only lactose intolerant.

I have not found a coffee creamer I like that does not make my coffee taste weird.

I have not found an ice cream I like that is creamy.  (there are some coconut based ones that are suppose to be good but my kiddo is allergic to coconut.

In mashed potatoes, I use some of the starchy potato water with safe margarine.  My kids actually do not like mashed potatoes with milk, they say they don't taste like potato.

In frosting I love to play with liqueurs and juices.  I even once made blueberry frosting with blueberry syrup (for pancakes) and my kids loved it!  If I don't want a flavor other than vanilla I use iced water.

Baked goods I use juices or water and I adore chocolate cake with cointreau or for really chocolate taste, a chocolate liqueur.


For Egg, I always had good luck with flax gel for things like meatloaf, meatballs, and heavier baking like pumpkin breads.  For lighter baking I had some luck with applesauce.  Both changed the flavor of lighter tasting pastry or cookies.  For those I played....a lot......some very bad experiments.  And then I discovered making cake with 7-up!  Vanilla cake tasted so good again!  Sometimes just adding extra baking powder to get more lift was enough.  Sometimes corn starch helped hold baked goods together.  There are some egg free baking cookbooks out there.  I had mixed luck with them but that is where I started and then experimented from there.

As for pancakes.....I just left out the egg and upped the baking soda or powder depending on what the recipe called for.  They are not as fluffy, but they are good.  Heart healthy Bisquick makes up nicely without the eggs.  I don't have a box right now but the website ingredient list is: Enriched Flour Bleached (wheat flour, niacin, iron, thiamin mononitrate, riboflavin, folic acid), Canola Oil, Leavening (baking soda, sodium aluminum phosphate, monocalcium phosphate), Dextrose, Sugar, Tricalcium Phosphate, Salt, DATEM, Corn Starch.


For me no two sauces are the same because I just put whatever I'm in the mood for in it.  And I don't measure.  There are a few things I always do.  I always start by sauteing some kind of an onion (no garlic for us) and once in awhile I'll add peppers (not a favorite flavor of mine).   I use shredded carrots, yep, dump the bag in or shred my own right into the pot - that's my sweetener.  Salt and pepper or red pepper flakes.  If I am using dry herbs I add them before a long simmer.  If I am using my favorite -  fresh basil, I add it for the last half hour only as the flavor seems better.  I use to start from tomatoes....ummm, really did not have to start there - LOL.  Now I mix some cans of crushed tomatoes, some diced tomatoes, and tomato paste (for me they have to be plain, no herbs, or spices, etc....so there is no garlic).  Sometimes I add beef broth, sometimes I add red wine, those just change the flavor a bit.  That's it.  Mine sits on the stove for hours on low.  I don't use the crock pot because it is too small for the amount I make.

Then when I want something different, from there it's my mood, mushrooms, sausage or other meat, olives, zucchini or other veggie. 

One extra word of advice when making sauce in a crock pot (yes this really did happen in my single days).  If you start your sauce in the morning and go to work and your friend calls with tickets to see Carlos Santana and you don't go home, by the time the concert is over and you get home.......sauce looks like baked beans!  LOL!  You mean my crock pot doesn't turn off by itself?

I did try to make my own sauce on Saturday and it was really bland but it didn't cause a reaction in my DD at all. I need to find a good recipe, preferably one that I can let sit in the crockpot for a few hours.

I have picked up the Enjoy Life chocolate chips recently and they were great and I was shocked at them being dairy, egg, nut AND soy free. At this point, because my allergic DD is still so young, I'm really just trying to curb my non-allergic DD to allergy friendly foods because I do make her muffins and pancakes and we make cookies (I'm a stay at home mom, so we bake something together once a week during baby DD's nap time). I also have an Earth Balance vegan and soy free butter here that taste EXACTLY like real butter and it's heaven, but I'm not anywhere near brave enough to allow allergic DD to come near it.

After it was confirmed with the skin test that she was allergic to dairy, I committed our family to a strict Paleo diet. Which was great, but Paleo still has lots of nuts and eggs and soy. So that's out. I have tons of coconut flour, almond meal and coconut oil that I'm afraid to use. I found a site yesterday that said it caters to recipes for those with allergies but I swear each recipe has something in it that I can't use. Lately, I've been using http://minimalistbaker.com for recipes, which is good because she uses Flax Eggs as her egg sub and I can do grape seed oil in lieu of butter or coconut oil but I'm so stumped when it comes to milk.

In regards to reactions being the Golden Rule instead of testing, then soy is her biggest trigger. Anytime I've consumed soy and then breastfed her she flares up big time. Hives all over her little neck, arms and tummy. I thought soy frapaccinos from Starbucks would be a good dairy substitute, wrong. I thought Cinnaholic would make allergy friendly cinnamon roll treats for our family, wrong - those things are chock full of soy. Marinara with soy was the worst experience ever however that could have pretty much been a trigger of something else or multiple things. But each time I'm stumped because she's tested negatively for soy both in the original skin test and recently in the blood test. And that has all been after I have consumed it and then breastfed her, with the exception of the marinara sauce, that was first hand contact.

I think moving forward, I just need to resign myself to the fact that I need to do a lot more cooking from scratch and freezing batches to keep things simple around here.

And I love that idea of a halloween costume with gloves! Genius!

I don't trust Whole Foods labeling at all.  Many mystery reactions solved.  They cater more to those who have "allergies" and less for those with allergies, kwim?

Celery is a common ingredient in veggie based sauces.  Dairy as well.  So you are looking at shared lines.  WF tends to have a too bad, so sad attitude if you have a reaction.  It is frustrating as heck. 

I do shop at Whole Foods but mainly to find other brands we trust - Enjoy Life, Tinkyada pasta, Lucy's Cookies, Ians (these are brands that work well for our allergy set, not necessarily yours).

We do have allergens in the house but I am dealing with a MIL who has a gluten and bean intolerance, DS1 who is allergic to wheat, rye, barley and egg, DS2 who tests positive to peanuts (no known reactions, he did outgrow a long list of allergens/intolerances) and me who is allergic to bananas, eggplant and a host of drug allergens.  But we also have strict eating practices - assigned seats in the kitchen/dining room, food only at table, different colored glasses for the boys (and different colored plates when younger), DS1 has his own toaster (MIL tolerates cross contamination and her bread contains eggs), wheaty items are cooked but cannot be made from scratch (so I cannot make wheat biscuits from scratch but can make them frozen or from a can), I can cook gluten free from scratch, I buy Annie's cookies but only the GF options, etc.

We read labels every single time, even products like Enjoy Life which are free of the top-8 allergens, every single time. 

Welcome!  You've already received lots of good advice here.  Every family finds a different way that works best for them. 

I also chose to have our home allergen free.  My oldest has many allergies and asthma.  My DH, myself, and other two children do not.  I needed and wanted one place that was always safe, where I did not have to think, restrict my child, etc.....  Those baby/toddler years are tough with not touching faces and not putting things in their mouth.  Then there are the years of wiggly teeth, hands always in their mouths! 

Now my baby girl is 15.  She's come a long way, we both have.  At this time we only have 2 of her allergens in our home, eggs and sunflower seed spread (our family peanut butter replacement).  Sunflower seeds are a new allergen for her, just tested positive this past May.  She's had no interest in the spread but the boys have learned to be very careful when they use that or if they are using eggs.

The boys do not mind or complain ever about not having her allergens in the home.  It's the way they grew up.  Their first peanut butter was at school and neither one of them thought it was any better than Sunbutter, which our schools also have.  They eat melons and pineapple when they can when they are not home.  Neither one of them seems to care about nuts or sesame.

It becomes a life style.  At first very scary and restricting for good reasons and then a matter or routine.  Over time as they grow up, less restricting.  My DD is learning how to eat safely at a restaurant without me.  She goes to the mall, the movies, and pizza places with her friends.

Oh and on the subject of Halloween, even to this day, DD's costume includes a pretty or scary pair of gloves!  Our dentist office sends candy to the troops that the kids bring in.  I give mine a small thing....these days DD gets a new pair of earrings.

Have you tried to make your own sauce?  I do.  My DD is allergic to garlic so I trust no jar sauce.  I make a big pot and freeze containers.

One of the most important things I learned from this group early on is reactions trump testing (as CMdeux just said)!  DD tests positive for apples but eats them often.  She tests positive for shellfish, can not eat crab or lobster but can and does eat shrimp.  Someone already said this earlier, keep a food and reaction journal.  It helps a lot when they are small and can not tell you what they are feeling.

Unfortunately, RAST (and skin testing) results do not correlate with either severity or with threshold dose.

That is, someone with a low RAST could be like my DD and need only microgram quantities of peanut to react with near-fatal anaphylaxis...  or could have a RAST over 100 and not actually be clinically "allergic" at all. 

History trumps test results-- period.   

Also to keep in your back pocket-- RAST values tend to peak at about 4-6yo.  It will be SUPER depressing if you retest in three years and don't see that one coming.  Just know that RAST values can go up and down for reasons that have nothing to do with anything.

You'll manage Halloween when that time comes.

Many families have a Great Pumpkin or a Halloween fairy. We let our child go truck or treating with a cheapo basket. He'd bring it home and trade it for something better: safe candy (you will find some) and a prize--less than "Santa Claus main gift level" but better than an every day toy.

I would throw the TOT candy in a bag and then in the trash in the garage. Many of the safe stuff he collected was rendered unsafe by being mixes with the other stuff. And repackaged can y is really dangerous.

Often times family members don't get it. That may be one is the most difficult things.

Thank you so much for your replies. I don't know any other parents that have allergies similar to my daughters'. I either run into parents that are dealing with really severe peanut allergies on levels that I haven't encountered personally or parents that have kids with a mild dairy or mild egg allergy and they kind of minimize food allergies. Then there is everyone else and they don't understand why peanut butter shouldn't be allowed in schools, which is fair, 13 months ago I didn't get it either but now I do and I'm pretty sure my close friends get it now by knowing me and my daughter. Anyway, it's comforting to know that there are people here who have been doing this a long time and your kids are in schools and healthy and eating. Yay!

In regards to food tolerance levels and whether or not she may outgrow her allergies, is that at all related to the scores that she was given when she did the allergen blood testing? I think it's a RAST score? Her levels were relatively low on everything but her allergist gave me the impression that it's likely that the nut allergies are more or less here to stay regardless of score. I'm wondering if celery is the same way but that's developed since the last time we saw him. She scored highest on dairy, which sucks, but scored nothing on soy and I swear she is allergic to soy.

Welcome and ((hugs)).

My 16 year old DS has been allergic to raw celery. He does fine with it cooked, though I honestly would not try that at this point. We always picnic at Easter, and once about dice years ago he reacted with hives around his mouth to a good that was cross contaminated with celery that DH and I packed for ourselves.

It does get better.

And your child is likely to outgrow at least a couple of these.

It does cause some problems at school. But there is something that can help. Tuck this info away in a folder for school: a 504 plan is a legal document that will give your child both safety AND inclusion. You'll want to talk to school before Kindy, but you can get one later.

Do you guys just stay away from processed foods entirely? How are there not entire lines of food product out there that are specifically geared towards food allergy kids? Or are there and I just don't know about them yet?


Yeah, because the bummer is-- there IS no hack when your allergen list includes soy, milk, and eggs.  That is, in my experience (and I've lived it) the evil trinity of food allergy, basically.  You could maybe substitute wheat in for one of the three and wind up in nearly as awful a place, but honestly-- any three of those four (wheat/milk/eggs/soy) is a living nightmare in many ways.

It means that about 99% of anything that comes in a can, bag, or box is automatically off-limits unless you KNOW that there's no cross-contamination in processing that food.  The only way to really know that is to call the manufacturer and hope that they are helpful.

Sorry about that. 

It will probably help you to know that it's LIKELY that one or more of your child's allergens is high-enough-threshold (that is, needs a larger triggering dose to cause reactions) meaning that you might be able to get away with foods that have a known but low level contamination risk (like a milk substitute run on shared lines with soy, for example).  That kind of thing DOES make it easier, but it's also often trial and error to figure it out over a long period of time.  I was very lucky that when my DD was your child's age, milk and soy were both like that for her.    UN-luckily, peanuts and treenuts were most emphatically NOT like that, and neither was egg, which meant that about 90% of the gluten free stuff that I could have used for her... I couldn't.  I was forced to take some calculated risks in order to feed her at all, because I had to find protein and grain (or grain-substitutes) that she could tolerate and which were high enough in vitamins and minerals to keep her out of a FTT diagnosis... which, um... she actually DID earn anyway briefly when she was two.

I don't recommend that people use bulk foods if they have food allergies, for example, but if you are dealing with multiple life-threatening food allergies, and you have at least two of the unholy four mentioned above, all bets are off-- you do what WORKS.



Potatoes, chicken, and carrots were a staple meal at our house during those years, btw.  That was my "I need to not be staring at my kid for the next five hours" meal.    It's low allergen risk, and EVERY aspect of it is lower risk still due to lack of processing and the ability to scrub/wash the ingredients thoroughly beforehand.  That and a little Morton's salt was about all that DD ate after a reaction of any magnitude-- at least until things settled down again in a week or two.