Resources for the multiple allergic child

My great-nephew has been allergic since he was born. He just turned 3 and his current allergies are: Food: peanut/tree nuts, corn (including HFCS, corn oil and corn starch), wheat, egg, soy, dairy, chicken, pork, vanilla, cinnamon, banana, avocado, pineapple, sweet potato, coffee.

Non-Food: every kind of tree around us, almost all the grass, a couple weeds, a couple fungus and cats.

The foods he can eat are shrinking. He’s getting older and he sees that other people are allowed to eat things he can’t have. Does anyone have tips on dealing with such a restricted diet?

StG

Investigate every ethnic cuisine you can and every novel foodstuff you can find.

I’ve suffered from multiple food allergies pretty much all my life (and I’m pushing 50). My alternatives were either a highly restricted, boring diet or seeking what was out there that I could eat.

Also, please tell me he’s under the care of an actual allergist.

Desensitization treatment for anything for which it applies - getting five years of four allergy shots a week wasn’t all sunshine and puppy dogs but it was of immense help and I’d do it again in a heartbeat if there was any more benefit to be had. This should be done ONLY under the strict supervision of a professional allergist.

Anyhow - back to food. Yes, that list is a pain in the butt, but let’s look at broad categories:

Forbidden grains: corn, wheat.

OK - can he eat barley, rye (but check carefully for it being mixed with wheat or corn), oats, rice, millet sorghum, buckwheat/soba, teff, and/or quinoa?

Forbidden nuts/legumes: peanut, tree nut, soy.

OK - can he eat lentils, peas, sunflower seeds, snap (green) beans, kidney beans, red beans, pinto beans, black beans, mung beans, adzuki beans, chickpeas…? There are actually a LOT of beans out there. He may not be allergic to all of them but, again, determining this must be done carefully and please discuss it with his doctor. I know that some docs find it easy to simply say “avoid everything in this category” but when you get into multiple allergies some fine tuning is required.

For myself, peanuts, lentils, and green peas are strictly off limits. So I use almond butter in place of peanut butter, as an example which, of course, won’t work for your nephew since he can’t have either, but it’s an illustration of substitution. If he can’t have pinto beans but he can have black beans then made refried beans with black beans instead of pintos and make your tacos out of teff instead of corn or wheat (teff is an Ethiopian grain often cooked into a tortilla-like flatbread called injera).

You can’t always make such substitutions but it’s worth investigating. And you will be making substitutions!

Forbidden dairy - is it JUST cow’s milk, or ALL forms of milk? If it’s JUST cow then goat’s milk, cheese make from goat or sheep milk, and so on might be viable alternatives. If not - humans do not require milk past weaning. He can live without it. He may be enjoying Italian ice and sorbet in the summer instead of ice cream (and do be careful what’s in those) but elimination of dairy is OK from a nutritional standpoint.

As a note: my niece is highly allergic to all forms of milk. She makes her own sorbet. (she can’t have soy, either, so tofu ice cream substitutes are off limits to her)

Forbidden meats: chicken, pork, egg

OK, what about beef, venison, buffalo, turkey, quail? Can he eat fish? If the answer is yes, then all the varieties of fish and seafood are open to him. If he can’t… sigh. It’s important to determine this for this rather than going by “well, he’s so allergic we just assume he can’t eat fish…” If he CAN eat seafood then you might be able to substitute some types of fish sauce (check the ingredients) for soy for Asian style cooking at home.

If he’s allergic to chicken then it makes sense he’s also allergic to eggs - but are non-chicken eggs OK? Could he eat, for example, duck or quail eggs? These would be harder to obtain, but might be safe for him to eat. Does he live somewhere that his family could keep a couple of egg-laying ducks around for him?

In his case, stay away from the meat substitutes tofu (soybean) and seitan (wheat).

Forbidden fruit: banana, avocado, pineapple.

OK, what about oranges, grapefruit, grapes, kiwi, lychee, plums, peaches, cherries, berries, apples, pears, papaya, dragonfruit, nopoles (prickly pear), mangoes, ugli fruit, persimmons, apricots, figs, dates, melons… there are a LOT of different types of fruit out there.

Avoid plantains - they’re basically a type of cooking banana.

Forbidden vegetables: sweet potato.

Is that all? Really? There’s the broccoli family, the cabbage family, turnips, beets, chard, carrots, spinach, onion/garlic/leeks, the lettuce family, potatoes, tomatoes, the pepper families, the squash family… there are a LOT of vegetables out there.

Forbidden spices and condiments: vanilla, cinnamon, coffee

Alright, that’s a pain in the butt, but you can live without all of those.

More advice:

Get used to cooking from scratch from raw ingredients. The upside is that he’ll probably wind up healthier in the long run from all this.

Teach him how to cook EARLY. Age 4 is early enough for him to start helping, learning about measurements, what things look like, and watch preparation of food. As he grows older teach him to use the microwave and, as appropriate, how to prep and cook food in multiple ways. He’ll also need to learn how to “decontaminate” utensils to remove possible contamination.

Teach how to say NO and make it stick. the world will not reliably provide an allergen free bubble. He WILL encounter people who, through either ignorance or malice, try to get him to eat stuff that, for him, is poison. He needs to be able to say NO to an adult trying to force food on him. His parents and extended family needs to back him up. He may need to fend off siblings, cousins, and other relatives. He will definitely need to be inoculated against peer pressure.

Other random thoughts:
If he can eat olives, GREAT - olive oil can frequently be substituted for butter, especially on vegetables. Microwaving vegetables with some olive oil on top can be a great, easy intro to cooking and healthy eating. It can also be used for pan-frying and as a general cooking oil.

If he can tolerate sesame seeds then tahini can be used as a sauce (but watch the ingredient list, as always).

There are a lot of condiments and spices that don’t require either vanilla or cinnamon.

There are other things to drink besides coffee (tea is my favorite)

Can he eat sea vegetables? That’s kelp and seaweed, which may sound off putting but can be quite tasty. The Japanese use kombu (a type of kelp) to make a traditional broth called dashi that serves a similar purpose to chicken broth in American cooking. While it also frequently incorporates things like bonito (which is fish, which may or may not be on his forbidden list) you can make it with just water and kombu, and it’s about as difficult as brewing tea. Actually, the hardest part for me was finding a source of kombu, what with being 2000 miles from any ocean.

Can he eat mushrooms? Aside from the traditional uses of mushrooms in Western cuisine, *dashi *made with shiitake mushrooms as well as kombu is a bit more tasty than kombu alone.

Sushi! If he can eat fish, great, if he can’t eat fish then strictly vegetarian/vegan maki rolls could work. All you need are sheets of nori, rice, and vegetables. Just be careful what is mixed in with the rice.

Get a food processor, a crock pot, and a rice cooker Very useful, all of them.

The biggest problem I see with his list is finding a reliable source of protein for the kid, but as I’ve noted, that needs to be done with the help of a professional and not some allergic layperson on a message board.

Good luck - I know it’s overwhelming, but try to focus on what he can eat rather than what he can’t.

No advice from me here, but … how does one find out that a 3-year-old is allergic to coffee? Is it the caffeine that causes the reaction?

Are beef and white potatoes still on the OK list? Sounds like he’s gonna be a meat-and-potatoes kind of man when he grows up … :smiley:

I neglected to ask about rabbit and lamb as potentially safe meats - if so, instead of a pork chop he can have a lamb chop. Battered and fried rabbit instead of kentucky-fried chicken. Etc.

Broomstick - Lots of great information. He has been under the care of allergists basically since he was born. Part of the problem, as I’m sure you can relate to, is that the allergies are ever-evolving. Until recently he could eat chicken. Then they thought maybe it was the corn that chickens are fed that was causing the reaction, but the allergy tests are now showing chicken is an allergen. He can eat some grains, and had birthday cupcakes last week made with oat flour, quinoa, tapioca flour, etc. His mom is afraid of desensitization. I’ve heard of teff for hay , but I didn’t realize they used it for grains, too.

For oils, he can’t have vegetable or corn, but can have rapeseed oil. He might be able to have sunflower butter. He’s not allergic to cocoa, which surprises me.

He loves most fruits and veggies - he used to love avocados. He used to like the snack-sized canned peaches, but the company started using a corn-based sealant on the container (plastic cling-film on the cups) and he had a reaction to them. So far, sweet potato is the only thing he’s tested positive on, I think.

Dairy - as far as I know, they haven’t tried him on anything like goat milk. I suggested it, but his mom has gotten so paranoid (rightfully). He actually still takes a prescription brand formula they started him on as an infant when he couldn’t tolerate anything else. He needs the calories.

Hopefully he’ll be able to continue to eat beef. They live in rural Indiana, so I’d bet there shouldn’t be a problem getting a hunter to give them some venison and other game. We aren’t a big fish-eating family, so I don’t know but believe he can eat that.
He’s a very happy, cheerful kid, thank goodness. School may be a challenge eventually, but so far he understands that he can’t eat things, and some of the things he’s allergic to they’ve found out about because he refuses them. Like his body seems to know that it can’t tolerate it.

purplehorseshoe - They ran a battery of tests based on common allergens. Coffee was on the panel.

StG

Is there a reason she is afraid of this?

While it does not work for everyone, and there are some people for whom it is not appropriate, for most people it makes some improvement and for others a great deal of improvement. There are also some experimental desensitization techniques for food allergies that are not intended to make those foods safe to eat but to reduce reactions in the event of accidental exposures.

It does need to be done under medical supervision, but in my extended family, which is loaded with allergic people, none of us ever had a serious reaction and any problems were quickly taken care of.

It made an enormous positive change for me.

Ah, yes - I hate it when I develop an allergy to a food I like. Most annoying.

While I understand mom’s paranoia - I’m a bit paranoid about food myself - she needs to be able to move past it occasionally or the kid is going to be living on about three foods and one beverage. Again, doctor supervision, but the doctor surely knows the issues with a super-restricted diet.

If they’re in rural Indiana people might have some trouble understanding the details, but if they make it known the kid has a medical condition with a really restricted diet they might get donations from time to time. This might be an instance where taking up hunting and fishing could be a good thing.

Let’s see… wild game in Indiana that can be taken legally (the eating kind) includes turkey, opossum (um… most folks I know aren’t too fond of that one), deer, squirrel, grouse, pheasant, quail, rabbit, frog, turtle, mourning dove, duck, goose, and woodcock. If they have enough room they might, as I mentioned, be able to raise ducks, or rabbits. Guinea pigs are edible but I think there would be a cultural problem with that in Indiana (although locally I know some Peruvians who BBQ and serve it at celebrations and I’ve been told be reliable sources it’s quite good). We’ve got families in my area that hunt all their own meat and we’re considered “urban”, so in the rural areas I’m sure you have people doing this.

Either that, or the kid will wind up vegetarian. :wink:

Food allergies can be a social obstacle well into adulthood, but it’s a manageable problem.

And yes, kids often know what’s bad for them - when I finally got formally tested my mom said “wait, everything on this list is the stuff she doesn’t like”. Right. The doctor explained that if every time you eat something you get ill pretty soon you won’t like it. While there are some things I enjoyed eating for many years that are now forbidden, my distaste for even mild allergic reactions (much less the ones that lead to ambulance rides) pretty much kills any urge to cheat.

Then they should also know if he reacted to fish or not, as that is one of the big common ones.

The other reason that it is important to know if he’s allergic to seafood/shellfish is because some medical imaging contrast dyes cross-react with that one. So it can be important for some types of medical testing.

Also - I really hope someone has told them this one - do NOT give him flu shots if he’s allergic to chicken!!!. The vaccine utilizes chicken eggs in its production. ANY time he gets a vaccination they need to make sure it’s NOT an egg-based vaccine. In some cases there are substitute formulations, but not always.

You can be allergic to chicken? I thought that was unknown?

As it is, he should carry some OT anti histamine drugs on his person, Allegra, Bendryl etc. I always do, and it can be a life saver in an emergency. More importantly, when he is older he can pop one if he is at a gathering where he has eaten food which he suspects might contain an allergen.

Broomstick - They probably know if he has any fish allergies, it hasn’t come up when I’ve talked to them. I know they know about the egg/flu vaccine thing. I think she’s afraid there will a major and potentially deadly reaction during desensitization.

Did your family eat different foods than you, or did they all eat around your allergies? Have you outgrown any of your allergies?

AK84 - Oh, they always have benedryl and epipens around just in case.

StG

Desensitization is always done under supervision. While reactions can be prompt, intervention almost always prevents fatalities.

Thing is, he is going to discover new things he is allergic to as he grows. He will be able to tolerate something for years and then one day, wham. :frowning: .Sucks, and most annoying is the unpredictability of an attack and severity.

Finally, lots of medicines are marketed as being non sedative. They lie.

I had desensitizing shots many, many years ago when the technology was probably a lot less developed and never had a problem. And I can now be in a newly mown lawn without wheezing and sneezing. I was born allergic to milk (long story here…) among many other things and as a child it seemed like I added a new allergy every week. BUT as I went through adolescence many of the food allergies began to disappear. Today at age 66 I can drink milk and eat ice cream and so on. I still have a lot of inhaled allergens but most of the food issues are gone. Just two years ago, though, I found out I am allergic to raw celery and raw peaches. Huh.

Anyway, I started this to say, try to encourage her to get the desensitization shots. They really did improve my quality of life.

ETA So tell the kid some of the allergies may disappear as he grows older. I found it very encouraging when my doctor told me that maybe someday I could eat ice cream. And I can!

I understand where that fear is coming from. However, prior to desensitization testing is done to get some grasp on severity of reaction as well as what sets him off and there are emergency supplies immediately at hand. The people doing the initial work are experts and they will spot and treat any adverse reactions as fast as humanly possible.

It’s not an irrational concern, but the facts disagree with her assessment. Again, she needs to consider this, if not now then when he is older. Desensitization can prevent the sort of extreme reaction she fears.

I was not raised in what would be considered a “safe” household these days. I was taught from an early age what NOT to eat, just as you teach a child not to drink the bleach or sample the rat poison. Until I was old enough and responsible enough not to do those things they were kept out of my reach/access but they were not barred from the home. When we were eating little if any concession was made for my allergies - if it was spaghetti night noodles and sauce would be served separately and mine might be olive oil and garlic rather than tomato sauce but other than that I’d eat everything everyone else was eating.

For my niece it was little more complicated - she was (and is) so sensitive to fish that being in the same room where it is cooking can set off a severe reaction so it was largely banned from her home while she was growing up. But such prohibitions were based on real medical issues, not a desire to bubble wrap us. The adults have long understood that sooner or later we’d have to go out in the real world where we would have to be responsible for our own health.

A similar rule applies now that I’m an adult - no food is banned from the house, but if my spouse brings home something I shouldn’t have he gives me a heads-up. He’s got a shelf of food in the pantry he can eat that I shouldn’t. If he eats tomato sauce he’s not kissing that night, if he wants steak sauce on something it’s added after I’ve had my portion.

In other words, the only concessions made were those that were absolutely necessary. For your grand-nephew this might be more of an issue because he sounds a bit more like my niece than myself, but he needs to be able to deal with situations where his allergen(s) is sitting on the table in a bowl. Food does not, actually, leap up and force itself down your throat. My niece does not need to avoid walking by the fish counter at her local grocery store, it’s not like radiation.

Not the food allergies. I have only added to them over the years. Many others are more fortunate and do outgrow childhood food allergies. YMMV.

I did outgrow the ragweed allergy… around age 40! I also had shots for that one. The only allergies I ever lost were those I was desensitized to, either shortly after starting the shots or, for ragweed, a couple decades later.

Part of the scary stuff is that the science on this is still inexact. For the shots, as an example, it’s impossible to guarantee they will work prior to starting, or how effective they will be. There is no definitive cure.

Good!

Just don’t oversell this concept - not everyone outgrows them, and if you’ve had allergies once you’re at higher risk of getting new ones in the distant future.

However, the ONLY way he’s ever going to outgrow them is by avoiding what he’s allergic to!* If he keeps provoking a reaction it will never go away, and likely get worse.

  • The sole exception is those experimental food desensitizing treatments, but that’s much more medicine than eating. And only under a doctor’s watchful eye!

I went through this. The short version is that you’re looking at it the wrong way around: concentrate on what he can eat, not what he can’t.

And is he fat or thin? In my case, I’m damn sure that being thin (though not clinically underweight) was a significant contributory factor.

He’s not fat, he’s a little too thin. He’s had digestive issues since birth, as an infant going through swallowing studies, endoscopies, colonoscopies.

As far as the desensitization, I’m all for it. My BIL (different sister’s husband) takes the sub-lingual allergy drops and they work wonderfully for him.

This posted by my niece two weeks ago before his 3rd birthday:

StG

Might I ask if the mom asked the level of allergic reaction on the skin test?

See, I popped allergic to 135 different substances on the skin test [including horse, goat, rabbit, cat, and a number of other things that I was in contact with on a daily basis that I had no discernable reaction to. I used to own a horse and work in a stable to pay for his housing while I competed in dressage and steeplechase. A bit difficult to avoid horses :stuck_out_tongue: or the stable goats they kept for company for a couple of the twitchier horses.]

When I asked about my allergies [I really should see if I have the original list somewhere] the doctor admitted that most of my reactions were at the minimum level and probably wouldn’t actually need any sort of intervention and to just pop benedryl if they seemed to give me any issues. My food allergy to mushrooms was pretty much off the chart and I was advised to really really avoid them and got a scrip for epipens which I did end up having to use when someone deliberately fed me a covert shroom to prove I wasn’t allergic:rolleyes:

Many people would simply take the allergist’s saying ‘allergic to’ and not ask about the level of allergy.

There’s a new protocol being tested for kids with multiple severe food allergies (link to NYTimes article).

Have the parents heard of this? would they consider it? It might require travelling some to get to a clinic that can handle it.

While I entirely support the notion of new treatments for food allergies I must say I get a bit annoyed at how these are aimed exclusively at children. What about us adults? Too often this is portrayed as a problem that kids have. Given our present knowledge, a lot of the kids who have this problem today will continue to have it as adults.

Good point! I guess “but, CHILDREN” gets more funding / media attention, but I guess the same treatment protocols would work just as well on adults.

Right, except when I attempted to volunteer for such studies myself I was told “no, children only”. Rather frustrating. A lot of the funding that kids attract wind up for kids only.

You’re right about kids getting more funding for some things. Maybe it’s a sore spot with me in part because my spouse’s disability has charities and research that, again, tends to focus on children and forget the adults. My spouse once met the head of the primary foundation for his disability in Illinois and her reaction was “I had no idea there was anyone past their early 20’s with this.” He was 50 at the time, and could name a half dozen other over-30 adults with the same birth defect. Now, if we were talking about a member of the general population that’s understandable, but this lady is suppose to be an authority and an expert.

Likewise, I have on numerous occasions related my multiple allergies to medical personnel and been told some variation of “that’s unheard of in adults” (um… no, it’s not) or having them look at me like an idiot and say no, we don’t want your daughter’s medical history we want yours. Uh… I don’t have children and yes, that information is mine. Or that one occasion I was told I must be mistaken, this just doesn’t happen in adults. :rolleyes:

It’s shocking how ignorant some medical people are. I suppose some of that is understandable if you’re talking about a super-specialized medical person but these weren’t that sort.

Anyhow, write that tidbit down, too - a kid with multiple allergies (really, anyone with a chronic problem) needs to be taught how to educate medical people who don’t know as much as he or she does about his or her particular problem. Allergist should know more, but a lot of GP’s don’t have as much knowledge of this problem as someone who has to live with it 24/7. (That doesn’t mean all allergics, or all those who claim to be allergic, are true experts, either. Well, it’s complicated…)

I know this thread is about allergies, but I have to say this bugs me about what until recently we were calling Asperger’s. I think my 50ish brother is on that spectrum, but there seems to be little interest in diagnosing it in adults, and few resources if diagnosed.

Um, if we are successful at managing these conditions in children, then you eventually expect them to turn up in adults, right?

A lot of people with children with chronic problems have a bit of a shock when the kid turns 18 or 21 or whatever constitutes “adult” and they suddenly discover many support systems just end, as if that landmark birthday somehow cures the problem.

It doesn’t, of course.

While some children with allergies are fortunate enough to outgrow them, it doesn’t happen for everyone, or for every allergy.

That’s one reason I have mixed feelings about peanut-free zones and the like for kids with food allergies. Yes, it’s good we protect them, but I know from personal experience that the adult world doesn’t have safe zones. You have to teach your kid how to be safe without them.