A few food allergy questions. Please help!

[bluejaunte]

I'm pretty well terrified right now, so any advice/assistance is helpful. I'm so stressed my teeth are chattering and I'm shaking head to toe.

We're looking at class 0/1 allergies to corn, chocolate, and beef; class 2 allergies to soy, cow milk, wheat, and egg; class 3 allergy to peanut. That's all but 2 of the things they tested for. We need a more comprehensive test, and he'll probably be allergic to all of that too.

Are any of these likely to go away? Or some causing others, and then when the causes get eliminated the others go away?

If you have a peanut allergy do you have to avoid all nuts, legumes, and seeds, generally? What about coconut? Cashew butter has sort of been his calorie staple so far but someone just told me that cashew is the most deadly allergy there is, and I think I shouldn't give him any more until we get that tested. I'm not anywhere near so worried about the no dairy/egg/soy as I am about having to eliminate tree nuts, legumes, and seeds. I just bulk ordered some sunbutter but he might well be allergic to that too!

IS there a more comprehensive blood test? There must be ..

Do toddlers usually lose a ton of weight on an elimination diet? It's looking like pretty much all I can feed him is rice .. and that hasn't even been tested yet. He may well be allergic to that too. I spent so long his first year trying to get him to grow (which was probably an issue due to the allergies!) and now I'm so scared he'll turn into a bundle of sticks.

Would he have turned up an allergy to something he'd never been exposed to? He wasn't allergic to fish/shellfish, but that's a really common one and he's got almost all the other ones. Actually he'd had NN omega-3 liquid before this test, so I guess he was exposed to fish ..

He's so picky anyway. These days he wants to live on dry cereal (gluten-free corn stuff; his corn allergy is minor -- class 0/1 -- and I haven't found rice chex yet). He won't eat meat, and he can't have dairy/soy/egg and probably no nuts/seeds/beans either .. and as he hasn't been tested for fruits/veggies/etc yet, he may well be allergic to most of those too. Do they actually get less picky when you remove allergens?

What about things like vaccines? He hasn't had any yet, and I'd love to never give him any, but we're in NY so I don't know if we can get him an exemption. I don't much want to inject him with something he's allergic to.

How do you monitor symptoms if they're not external? He's never had what I'd call visible allergy symptoms -- rash, vomiting, etc. except that his poop gets mucousy when he eats dairy (which is very infrequently). Then again, he's clingy/miserable for no reason a lot. That's probably because I'm poisoning him, right? Does that improve off of allergens? What if he's allergic to something he's not tested for? Every time he gets clingy or cranky I won't know if it's because he ate something he shouldn't. Every. freakin'. time.

If I remove an allergen he's not reacting visibly to, when I trial it back in will he react violently to it? Is he likely to become one of these people who can't be around someone who's eating peanut butter without needing rushed to the ER?

How am I going to get him to eat anything nutritious? He's still nursing, so that's something .. but what am I going to eat? I'm vegetarian!

[kjbrown92]

How old is he?
What was the test - RAST (blood test) or skin prick test?
There can be false negatives and false positives with either test, though more likely with the RAST, and more likely if the child is under 2yo.
I wouldn't say you had to avoid all legumes just because he's allergic to soy and peanuts.
Did they say anything about epipens or a plan of what to do if there was a more sever reaction?
Kids do outgrow allergies(though nuts and shellfish are less likely to be outgrown than others), usually by age 5. The statistics are out there.

[Twoplussixis8]

What test was done?

[bluejaunte]

It was a blood test. That's all I know. The results just say "Allergy Panel, Food" and there was another for mold (which he has a couple of really mild allergies to).

He's 27 months. I read that they can be outgrown but he's hard to feed NOW. I guess part of that might be due to the allergies?

They didn't mention epipens but he hasn't been to an allergist before. That's next. He got the allergy panel because I requested it -- his liver panel is elevated and he has chronic low ferritin serum/high normal-to-high white count and he's pretty miserable a lot of the time, so I was requesting every test I could. The pediatrician never suspected allergies, so he didn't have any advice for me except "see an allergist." I'm sure there'll be discussion of epipens there.

If he was going to be allergic to fish, that would've shown up, right? Or should I not start giving him the omega-3s again? Eh, I guess I'll talk to the allergist first ..

Is there a better blood test out there that covers more foods? Tree nuts, fruits, veggies, legumes, etc? I'm terrified of the skin test & I have no idea how we'd run it on him without sedation. He's had so much blood work and he has a mortal fear of doctors already.

[kjbrown92]

The clinginess etc. could be because he's not feeling well because he's reacting to the foods. So yes, that could improve when you take the foods out (of both your diets, if you're still BFing). Some kids get less picky when their trigger foods come out of their diets. Some don't. I would get more foods tested if I were you. And either way, I'd start keeping a very detailed food journal (just him if he's weaned, both of you if you're still BFing). You may notice patterns of clinginess after a certain food, etc. Check all supplements, vitamins, meds for those things as well.

[bluejaunte]

Ok, I won't remove all legumes until we can test them (if they even test for those?) What about tree nuts and seeds? Someone told me yesterday that cashews were the deadliest food allergy, and common in kids with peanut allergies. Should I remove them without further testing? My gut says yes, but then again I'm terrified and panicking.

[bluejaunte]

Hmm, okay, now I'm seeing a lot of info on false positives on the RAST test. I'm guessing that was the test they did.

If he's never had any visible allergic reactions to foods (no hives, swelling, rash, vomiting, etc -- actually when he was tiny he vomited three times when he had banana but then seemed to outgrow it) .. is it likely these are false positives? At least some of them? I've always thought of him as having probable food intolerances, probably celiac (we go to the GI tomorrow), as his main symptoms are restless sleep, clinginess, irritability, random awful diaper rashes, gas, mucousy poops on dairy ..

He's still nursing and up until, um, yesterday, I was eating a moderate amount of soy, and there was trace casein in a couple of things I've discovered in the fridge. He's always eaten corn, egg, tree nuts, seeds, etc. with no problem.

Do I cut EVERYTHING or see the allergist first? I was already preparing to cut wheat, gluten, dairy, and soy, but this has totally thrown me for a loop.

[sbgrace]

I put replies in your message.

Originally Posted by bluejaunte

I'm pretty well terrified right now, so any advice/assistance is helpful. I'm so stressed my teeth are chattering and I'm shaking head to toe.


We're looking at class 0/1 allergies to corn, chocolate, and beef; class 2 allergies to soy, cow milk, wheat, and egg; class 3 allergy to peanut. That's all but 2 of the things they tested for. We need a more comprehensive test, and he'll probably be allergic to all of that too. Not necessarily allergic to other things. You also need to know there is a 50% false positive rate in allergy testing. A competent allergist is going to suggest follow up testing. It's hard at two but maybe a food challenge. Given the other diet restrictions you're looking at you need to know if he's really allergic to this stuff. He may not be.

Are any of these likely to go away? Or some causing others, and then when the causes get eliminated the others go away? Statistically he's likely to outgrow the dairy, soy, egg, etc. He's less likely to outgrow peanut but that does happen. Tree nuts (which he may well not have) are very unlikely to outgrow.

If you have a peanut allergy do you have to avoid all nuts, legumes, and seeds, generally? No, not necessarily at all.
What about coconut? Coconut is not a common allergen and most nut allergic people handle coconut fine (there is a lot of nut cross contamination in coconut products though but that's another issue altogether).
Cashew butter has sort of been his calorie staple so far but someone just told me that cashew is the most deadly allergy there is, and I think I shouldn't give him any more until we get that tested. I'm not anywhere near so worried about the no dairy/egg/soy as I am about having to eliminate tree nuts, legumes, and seeds. I just bulk ordered some sunbutter but he might well be allergic to that too! My son did develop a sunflower allergy after I fed him sunbutter. But his allergens made it more likely he was seed reactive than your son's allergens. Since you're not seeing reactions and you're so limited I would still feed him cashew butter (assuming it doesn't have peanut trace--call the company) but I would test cashew. If he's negative keep doing it/if he was going to react he would have by this point as he eats it daily.

IS there a more comprehensive blood test? There must be ..
You can RAST test anything. They just picked the ones they picked. You can do a nut and seed panel and that's certainly one you want.

Do toddlers usually lose a ton of weight on an elimination diet? We would hope not. He has to have adequate calories and protein to grow. So if that isn't happening you've got to make changes to make it happen. At the end point I suppose you could do a hypoallergenic formula though I don't know if he'd drink it and it's very expensive. I would be stretching to find either vegetarian protein and calorie sources for him or seeing I could morally handle non-vegetarian food with him. It's looking like pretty much all I can feed him is rice .. and that hasn't even been tested yet. He may well be allergic to that too. I spent so long his first year trying to get him to grow (which was probably an issue due to the allergies!) and now I'm so scared he'll turn into a bundle of sticks. He will if all you feed him is rice of course but that's not going to happen. Deep breath. First step is figure out if these are really allergens. Some may very well be false positives. They likely are.

Would he have turned up an allergy to something he'd never been exposed to?
Not technically I suppose but if you ate fish in pregnancy or breastfeeding he was exposed. There is trace nuts and peanuts in so much. Most likely he's been exposed to the major allergens in some way prior.

He's so picky anyway. These days he wants to live on dry cereal (gluten-free corn stuff; his corn allergy is minor -- class 0/1 -- and I haven't found rice chex yet). He won't eat meat, and he can't have dairy/soy/egg and probably no nuts/seeds/beans either .. and as he hasn't been tested for fruits/veggies/etc yet, he may well be allergic to most of those too. Do they actually get less picky when you remove allergens?
Sometimes they do. But you don't know if he's really allergic to all this let alone that he's going to have more allergies. Have you seen any allergic signs in him food wise? Are you ok with him eating meat if you can find away to get it in him? He may be able to have dairy or soy or egg and this isn't an issue. He's unlikely to be allergic to all legumes. He doesn't (symptom wise) appear to have nut allergies or seed allergies. Protein is going to be your struggle. There are grain protein sources--quinoa and buckwheat and teff for example. But you are going to need more imo. But don't cross that bridge mentally until you have to do that. You need a good allergist right now.

What about things like vaccines? He hasn't had any yet, and I'd love to never give him any, but we're in NY so I don't know if we can get him an exemption. I don't much want to inject him with something he's allergic to. I don't think his allergen is in vaccines. I don't vax but I'm not in NY and I don't know the laws there. There are vax boards on here and you could ask there.

How do you monitor symptoms if they're not external? He's never had what I'd call visible allergy symptoms -- rash, vomiting, etc. except that his poop gets mucousy when he eats dairy (which is very infrequently). Then again, he's clingy/miserable for no reason a lot. That's probably because I'm poisoning him, right? Does that improve off of allergens? What if he's allergic to something he's not tested for? Every time he gets clingy or cranky I won't know if it's because he ate something he shouldn't. Every. freakin'. time.
This is hard. My son is GI too and it's really difficult. You saw GI though in the stool with dairy so you pull that. He may not have the other allergens. You need an allergist and probably a pediatric GI to sort this out for you. I would say you pull the suspected allergens and see if he is normal/healthy and then add them in one at a time but you're already so restricted that I'd be concerned about adequate protein and calories while you do that. So I wouldn't. I would see an allergist though to try to sort out if you've got false positives. I would avoid peanut though and get an epi pen. You don't need peanut to feed this kid, it was RAST 3, and it is potentially deadly. I would assume he's really allergic to that and it could cause anaphylaxis so you need an epi pen. I'd avoid dairy since you saw reaction to that. The others you need help to figure out if they are true reactions.

If I remove an allergen he's not reacting visibly to, when I trial it back in will he react violently to it? Is he likely to become one of these people who can't be around someone who's eating peanut butter without needing rushed to the ER? You don't have a choice w/peanut in my mind since he was class three on RAST. If he's peanut allergic (I'd assume he is) he's already one of those people. Just because you haven't seen an anaphylaxis doesn't mean he can't have one with the next exposure. Avoid peanut. Get an epi pen.

He's still nursing! That's going to help. How important is vegetarianism to you? I would never ask that of anyone except that if those allergens are correct this is going to be a struggle for you. You'll have to think through this. See what a nursing mom needs protein wise. For now get it through protein rich grains, beans, and maybe the cashew butter since he's eating that and not reacting (and anything else protein rich like that). He may not be soy or egg allergic and that will fix your problem. One thing at a time.

[bluejaunte]

Wow, thank you SO MUCH.

The cashew butter he's been eating does actually have the warning label on it about being manufactured on equipment that processes peanuts & tree nuts. Huh. No reaction so far, but I'll pull it. No chance the peanut allergy was a false positive, then, I guess. Well, good thing he doesn't like peanuts. Now I'm just scared of cross-contamination and being around people who've eaten it .. especially when he goes to school. Eep.

Off to the ped GI tomorrow morning ..

[chrystigalbreath]

I don't mean to butt in on this but i have a child that is allergic to ALL seafoods and the most accurate testing for children is done at the age of 3 and that came straight from my daughters GI Dr and allergist and pulmonologist.

[bluejaunte]

Huh. So these might be false positives? Given that he's constantly exposed to all of these things with no reactivity?

[sbgrace]

Yes, they might be false positives. Good chance really that some are given the 50% rate. He can't, in my opinion, eat that cashew butter given the peanut warning. However, if worse comes to worse you can grind your own cashew butter if you can find whole cashews without peanut trace. I'd start googling cashew butters and see if you can find a company that makes nut butters but doesn't process peanut. Also start looking into other protein sources for him (and you).
How soon can you see an allergist?
Also, you need someone to prescribe an epi pen now.
Most kids who are anaphylactic aren't going to react unless they consume something. Some will of course and you carry an epi pen. The school needs education about when to use the pen.

[bluejaunte]

We only got the lab results yesterday. (Man, it feels like longer ago than that.) So we'll try to make an allergist appointment tomorrow. He goes to see the pedi GI tomorrow morning. D'you think she can prescribe the epi pen? Or does it have to be an allergist?

I guess the chance of false positives decreases as he gets older? So annoying that it's in the super picky 2yo stage that I have to be hypervigilant and cut things left and right. Is it possible that if, as I suspect, he's celiac, that could be causing the other allergies? I remember reading something about that the other day ..

Definitely cutting the cashew butter. I know there are raw cashew butters out there from companies that don't process peanuts, so I should be able to find something.

Do you figure that the peanut allergy can't be a false positive, given his lack of reactivity, or just that we should err on the side of caution? I agree that we should, I'm just trying to figure out how the false positives work. Is it that low numbers (say, class 2 and under) can be false positives because of margin of error and higher numbers (class 3 and up) can't? Forgive all the stupid questions, please. Allergies are something I never really considered up till yesterday due to his lack of reactivity.

So even though he's never been reactive before, and it might be a false positive, I'm treating the peanut allergy like a real danger. Also cutting out wheat, dairy, soy, and egg. Was sort of lax on the corn today, but his allergy rating for that was 0/1 (.07, with >.05 being allergic). It occurs to me, we put cornstarch baby powder on his diaper rashes, and it heals them. If he were reactive to corn, wouldn't the powder make the rashes worse?

Ugh. Really don't want more positives (false or no) on nuts/seeds/legumes/fruits/veggies. I don't have a moral issue with feeding him meat, but he seems to hate it, and so do I. Will request further blood tests at the GI tomorrow, and if she won't write the scrip I'll harass his general doctor. He's used to me by now.

[sbgrace]

I'm replying in your text.

Originally Posted by bluejaunte

We only got the lab results yesterday. (Man, it feels like longer ago than that.) So we'll try to make an allergist appointment tomorrow. He goes to see the pedi GI tomorrow morning. D'you think she can prescribe the epi pen? Or does it have to be an allergist?

I guess the chance of false positives decreases as he gets older? So annoying that it's in the super picky 2yo stage that I have to be hypervigilant and cut things left and right. Is it possible that if, as I suspect, he's celiac, that could be causing the other allergies? I remember reading something about that the other day ..
He/she might prescribe. The doctor/pediatrician who ordered the lab should have and I would think would if you ask. Make sure you talk to the pediatric GI about eosinophil gastrointestinal disorders given the loose stools, growth issues, and now allergy positives. http://www.apfed.org/egid.htm Any gut damage can increase allergy risk imo, yes celiac can be part of your picture. You do know you want him tested before you pull gluten from his diet?

Definitely cutting the cashew butter. I know there are raw cashew butters out there from companies that don't process peanuts, so I should be able to find something.

Do you figure that the peanut allergy can't be a false positive, given his lack of reactivity, or just that we should err on the side of caution? The reason I suspect it's not a false positive is that it tested class 3 (that's a high positive) and he's got the loose stools issues which could well be his reaction from the trace. And it's such a serious allergen and you really can't do a safe food trial with it at his age (he can't tell you if he feels funny, his throat is swelling, etc) that I think you have to assume, for now, it's truly an allergy.
I agree that we should, I'm just trying to figure out how the false positives work. Is it that low numbers (say, class 2 and under) can be false positives because of margin of error and higher numbers (class 3 and up) can't? Ask the allergist. I'm curious about what he'll say. My impression from our allergist was that the higher the RASTs the less likely they were false positives. It was the marginal (like your corn) that they seemed to want to trial. I think that's typical. But I've not asked directly.
I don't believe you have a higher false positive rate under age two. I've read after two it's more accurate but I think that has more to do with false negatives than false positives. The rate is 50% false positive no matter the age in my understanding. Another question for the allergist though and I'm curious about the answer you get.

Forgive all the stupid questions, please. Allergies are something I never really considered up till yesterday due to his lack of reactivity. You know how they say there is no such thing as a stupid question..true!

So even though he's never been reactive before, and it might be a false positive, I'm treating the peanut allergy like a real danger. Also cutting out wheat, dairy, soy, and egg. Was sort of lax on the corn today, but his allergy rating for that was 0/1 (.07, with >.05 being allergic). It occurs to me, we put cornstarch baby powder on his diaper rashes, and it heals them. If he were reactive to corn, wouldn't the powder make the rashes worse? I would think honestly but corn is tricky. It's a top intolerance. So might be worth cutting given his symptoms.

Ugh. Really don't want more positives (false or no) on nuts/seeds/legumes/fruits/veggies. I don't have a moral issue with feeding him meat, but he seems to hate it, and so do I. Will request further blood tests at the GI tomorrow, and if she won't write the scrip I'll harass his general doctor. He's used to me by now.

I make smoothies with chicken breast. Gross to me (and I'm certain to you) but it's the only way I could get protein in my son for a while. Hopefully you won't be faced with that. I hope the appointment is helpful.

[bluejaunte]

One more question (for now )

When sourcing cashew butter, I'm finding a couple of manufacturers that have no peanuts anywhere on the premises. Is that enough or do I have to somehow find out whether the cashews themselves have ever been near peanuts? How far back do people tend to go?

[lnitti]

Originally Posted by bluejaunte

It occurs to me, we put cornstarch baby powder on his diaper rashes, and it heals them. If he were reactive to corn, wouldn't the powder make the rashes worse?

Not necessarily. We used a diaper cream that had almond oil in it. It worked wonders. It was a favorite. dd never had any reaction to it. Later we discovered she is allergic to almonds, and had probably reacted to it in the cetaphil cream (in the tub, not the lotion).

My dd saw her current allergist at 2 and 3 months. We did a SPT for anything that was questionable on the RAST. There were some negatives on the RAST that we retested with the SPT that turned up positive (almond for example), and some positives on the RAST that turned up negative on the SPT (soy for example).

We are assuming that she is allergic to soy and almonds even though the RAST and SPT did not agree. Our doctor said that 2 years old was too young for a food challenge, which is the true test, since we cannot rely on her to tell us if anything feels funny (anything non-visible to us). So it was better to assume allergic until we can prove not allergic at some point in the future.

[sbgrace]

Originally Posted by bluejaunte

One more question (for now )

When sourcing cashew butter, I'm finding a couple of manufacturers that have no peanuts anywhere on the premises. Is that enough or do I have to somehow find out whether the cashews themselves have ever been near peanuts? How far back do people tend to go?

I call the company and ask if my son's allergens are used on the equipment that processes the food. Usually they will tell me if it's even in the facility/room etc.

[bluejaunte]

Ok, cool. I emailed a couple of raw foods companies that do cashew/tree nut butters but no peanut butters, and one of them, Artisana, told me:

"We take our statement of being 100% "peanut free" very seriously.
Our cashews... as well as all of our nuts and seeds are completely free of peanuts... from source to the jar."

So I think (barring undiagnosed tree nut allergies) that's an option.

Went to the gastroenterologist today. She thinks it's food-related, but can't tell if it's celiac, allergy, or intolerance without more testing. She ordered a whole battery of stool tests, plus the celiac test and a few more blood tests. Plus I'm going to call in RAST testing for tree nuts, seeds, citrus, etc. I just hope it's food-related, whatever it is, and not some kind of rare metabolic disorder we have to haul him down to the city to have looked at .. but I guess it'd be quite a coincidence to have food allergies AND a metabolic disorder that could present identically.

In short, he's still confusing specialists left, right, and center. The fact that the RAST did turn up allergies to foods he's been eating at least trace amounts of, though, may well explain the lot of it. The GI says that food allergies can account for the malabsorption (low ferritin serum) as well as the elevated liver panel and white count, etc.

He's so strong. He's probably feeling pretty miserable all the time and he doesn't (often) let it show.

[wendinbill]

First off, I'm so sorry for your little one's struggles!!

I am a Phlebotomist, and I wouldn't put too much faith into RAST testing. We've had the same patient done three seperate times, and all three times her allergies were different. I'd do a scratch test w/ an allergist.

Good luck, I hope it's not as severe as the RAST indicates.

[bluejaunte]

Wendinbill, thank you thank you thank you. I've been reading articles about the high false positive rate on the RAST. Are there false negatives too? Now I'm worrying that maybe things that turned up as nonallergens might actually be a problem too ..

Weird thing is, he's nonreactive to all of them. He does get digestive issues (diaper rash) and does have the allergy shiners, but his symptoms point way hard toward celiac or something like that, rather than allergies. (Waiting on the celiac blood test to come back, which I know also isn't very reliable!) I've never seen a histamine reaction in him to any of these supposed allergens -- which he's been exposed to all his life! No hives, wheezing, swelling, vomiting, nothing.