Food allergy parents — how careful are you with restaurants?

[Anonymous]

DS2 has severe allergy to gluten, but could tolerate trace amounts of it in soy sauce. I was told to keep up the exposure to what he can tolerate. He's also allergic to some peanuts and some tree nuts. We have to keep reminding ourselves to give him the nuts that he can tolerate so that he doesn't develop allergies to them later.

One local Vietnamese restaurant is very good about listing gluten free dishes, but then inexplicably sprinkled peanuts all over a beef dish that did not list peanuts as an ingredient. It's maddening.

[Anonymous]

Anonymous wrote:DC has a severe nut allergy. So far we’ve been informing restaurants of the allergy and asking about nuts every time we place an order. Is there anything I need to think about doing to be safe? Thanks for any tips and pointers, I’m new to this and find it a bit overwhelming.

You can count on cross contamination in all restaurants.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There is a Facebook group, Peanut and Tree Nut Allergy Moms. I suggest you join and ask there, as some folks here can be really nasty about food allergies.

One of my daughters has a severe PN/TN allergy. She almost died of anaphylaxis after eating cross contaminated candy when she was 8, so we are very cautious. Before going to a restaurant we check the website for an allergen menu, check AllergyEats (https://www.allergyeats.com/), and if needed call ahead and speak to the manager. Some restaurants take allergies more seriously than others; if you have any doubt, skip it, even if it inconveniences others. We cook a lot at home. There are some restaurants that have no nuts on the premises (like Chipotle) that tend to be our go tos.

Good luck! I know how stressful this can be and wish you the best.

Thank you so much. I’m so sorry to hear about your child. That must have been very scary. How was the candy cross contaminated, do you know?

My child is not peanut allergic, and so far what we know is that there are allergies to two tree nuts. The two are walnut and pecan. Many restaurants don’t use them in cooking. We do need to avoid baked goods because servers may not change gloves. I read that some people avoid restaurants because someone might be eating a peanut butter sandwich on break or whatever, and I hadn’t thought about that... sometimes I just worry I haven’t thought of all the things to avoid.

The first allergist we went to did a skin test and told us all nuts besides walnuts were fine. I gave DC a pecan while I was baking and we ended up in the ER. We are no longer with that allergist.

My child is allergic to walnuts and pecans too. They apparently go together as far as allergies are concerned so if you’re allergic to one your most likely allergic to the other. I’m really wary about restaurants because it’s seems like lots of places use walnuts for pesto and other things. Our sons ds said he can have almonds, but I’m too scared to try.

Almond allergies are really rare. Something about the protein is different than other tree nuts. My kid can tolerate almonds but is allergic to all other tree nuts. So, I wouldn't shy away from trying them.

[Anonymous]

Anonymous wrote:

Anonymous wrote:All of this. There are websites online that list chain restaurants that are good with food allergies. For non-chain you've got to talk to the restaurant and see how comfortable you are.

We are doing oral immunotherapy for my kid with nut allergies. If it's the right choice for you, it can be life changing. We took my kid for ice cream this weekend and didn't need any special treatment.

Tell me more about this. Can it be done for tree nuts?

Yes. My kid is in maintenance with peanut OIT and is now doing cashews and walnut OIT (the desensitization to those to has 99% likelihood to transfer to pistachio and pecan too). With an allergist you start are a minuscule amount of the allergen, and eat that for 2 weeks, and slowly ramp up. Took my kid 11 months to get to 8 grams of peanuts (about 8 large peanuts) and he's been eating that daily for almost a year. He could have a peanut butter sandwich if he wanted. You can stop at "free eating" or "bite proof", depending on how far you want to go. Because it's a very slow process you "train" your immune system not to react. If they do have a reaction, it's typically just something like a tummy ache or scratchy throat, though more serious reactions are possible. Tree nuts use the same process.

My 6 year old started tree nut OIT in January and is now eating a crumb of each nut each day (0.1 grams). We had a pretty easy ride for peanuts and tree nuts have been going well so far. The hardest part is getting my kid to eat 8 peanuts every morning when he doesn't like it. You have to keep eating the allergen in the prescribed dose forever so you don't "untrain" your body, but doctors are exploring with reducing the frequency of dosing after being in maintenance for a while. After 1 year, we're able to drop to 4x a week dosing, for example.

It's a big investment of time and energy, and can be stressful and frustrating, but it sure is satisfying to be able to eat the birthday cake at a party, or all the candy from trick or treating, or not have to sit at a special table at school. Not a lot of allergists are offering it yet in the DMV - only 3 by my count.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:All of this. There are websites online that list chain restaurants that are good with food allergies. For non-chain you've got to talk to the restaurant and see how comfortable you are.

We are doing oral immunotherapy for my kid with nut allergies. If it's the right choice for you, it can be life changing. We took my kid for ice cream this weekend and didn't need any special treatment.

Tell me more about this. Can it be done for tree nuts?

Yes. My kid is in maintenance with peanut OIT and is now doing cashews and walnut OIT (the desensitization to those to has 99% likelihood to transfer to pistachio and pecan too). With an allergist you start are a minuscule amount of the allergen, and eat that for 2 weeks, and slowly ramp up. Took my kid 11 months to get to 8 grams of peanuts (about 8 large peanuts) and he's been eating that daily for almost a year. He could have a peanut butter sandwich if he wanted. You can stop at "free eating" or "bite proof", depending on how far you want to go. Because it's a very slow process you "train" your immune system not to react. If they do have a reaction, it's typically just something like a tummy ache or scratchy throat, though more serious reactions are possible. Tree nuts use the same process.

My 6 year old started tree nut OIT in January and is now eating a crumb of each nut each day (0.1 grams). We had a pretty easy ride for peanuts and tree nuts have been going well so far. The hardest part is getting my kid to eat 8 peanuts every morning when he doesn't like it. You have to keep eating the allergen in the prescribed dose forever so you don't "untrain" your body, but doctors are exploring with reducing the frequency of dosing after being in maintenance for a while. After 1 year, we're able to drop to 4x a week dosing, for example.

It's a big investment of time and energy, and can be stressful and frustrating, but it sure is satisfying to be able to eat the birthday cake at a party, or all the candy from trick or treating, or not have to sit at a special table at school. Not a lot of allergists are offering it yet in the DMV - only 3 by my count.

Thoughts on the best/most reputable allergist doing this? I’ve heard many hospital allergists don’t want to try.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:All of this. There are websites online that list chain restaurants that are good with food allergies. For non-chain you've got to talk to the restaurant and see how comfortable you are.

We are doing oral immunotherapy for my kid with nut allergies. If it's the right choice for you, it can be life changing. We took my kid for ice cream this weekend and didn't need any special treatment.

Tell me more about this. Can it be done for tree nuts?

Yes. My kid is in maintenance with peanut OIT and is now doing cashews and walnut OIT (the desensitization to those to has 99% likelihood to transfer to pistachio and pecan too). With an allergist you start are a minuscule amount of the allergen, and eat that for 2 weeks, and slowly ramp up. Took my kid 11 months to get to 8 grams of peanuts (about 8 large peanuts) and he's been eating that daily for almost a year. He could have a peanut butter sandwich if he wanted. You can stop at "free eating" or "bite proof", depending on how far you want to go. Because it's a very slow process you "train" your immune system not to react. If they do have a reaction, it's typically just something like a tummy ache or scratchy throat, though more serious reactions are possible. Tree nuts use the same process.

Where are you doing cashew desensitization?? We were told it wasn’t an option (for anyone, not just our son) by our trusted doc at Hopkins!

My 6 year old started tree nut OIT in January and is now eating a crumb of each nut each day (0.1 grams). We had a pretty easy ride for peanuts and tree nuts have been going well so far. The hardest part is getting my kid to eat 8 peanuts every morning when he doesn't like it. You have to keep eating the allergen in the prescribed dose forever so you don't "untrain" your body, but doctors are exploring with reducing the frequency of dosing after being in maintenance for a while. After 1 year, we're able to drop to 4x a week dosing, for example.

It's a big investment of time and energy, and can be stressful and frustrating, but it sure is satisfying to be able to eat the birthday cake at a party, or all the candy from trick or treating, or not have to sit at a special table at school. Not a lot of allergists are offering it yet in the DMV - only 3 by my count.

[Anonymous]

Sorry- I managed to post in the middle of the quote

Where are you doing cashew desensitization?? We were told it wasn’t an option (for anyone, not just our son) by our trusted doc at Hopkins!

[Anonymous]

Restaurants can be scary. we TEll them she is allergic, then we ASK them for what is in the dish my daughter is interested in. then we ask again to clarify about the spices or sauce. usually, we send the server back to ask the chef just to be sure. no one wants to have to call 911, and they are usually very nice about it. so are we.

[Anonymous]

In some ethnic restaurants and/or places with non-native English speaking staff, there can be a significant communication barrier in communicating about allergies/ingredients. This can be exacerbated by the human tendency, more common in some cultures, to not want to say no or admit lack of knowledge.

In addition, beware the hidden nuts in many Indian dishes.

As others have noted, also beware of cross contamination. I’ve found stray peanuts in my allegedly nut free Chinese food.

[Anonymous]

Anonymous wrote:Sorry- I managed to post in the middle of the quote

Where are you doing cashew desensitization?? We were told it wasn’t an option (for anyone, not just our son) by our trusted doc at Hopkins!

Bumping to ask — anyone know about tree nut OIT in Baltimore/MD area?