Nut Allergy and OCD

[hoosier87]

Hello all,

I'm new here so I have been poking around but I didn't see anything on this topic yet.

I was dx'ed with a TNA 2 years ago.  The allergist poo-poo'ed it for some reason and even though I had subsequently WORSE rxn's to almonds and walnuts, he ignored them and said not to worry.  So, I didn't.  Until I almost died and then went a week without help.  It took me another week to recover and many subsequent breathing treatments and steroids (I have asthma and it flares terribly with even seasonal allergies).  It's obviously adult-onset (I was like 23 at time of dx).  I also have shellfish, salmon, and citrus allergies.  In general, my diet is restricted now.

My therapist is concerned because I am generally doing well in my treatment with OCD but this recent event has scared me a lot.  I'm terrified everytime I go to eat that people will just mix up an order or something.  Despite being hypervigiliant, I ate an ice cream bar (after reading the label) and found out it had almonds in it.  I got very sick.  It was just mislabeled.  I've had other instances where people have switched my dish with someone else's nut-containing dish (brownies or something).  I always have an epi pen on hand but I fear there will come a day when I have to use it and I don't want to have that happen again.  I can't control my worrying easily and I am sad because foods I used to love appear totally off-limits (chocolate, mainly).  I need to find a way to calm down but I need strategies to help cope with the uncertainty of situations in restaurants.  I don't have any friends with TNA's, so IDK what strategies must be employed.

What do you do to ensure safety at restaurants?  What do you do at parties?  Currently, I am having a great deal of trouble with this.  I once had a terribly dangerous rxn to a lobster bisque that wasn't disclosed at a dinner party. In fact, it was kind of intentional to see if I wasn't "faking it" by one of the people hosting the party. When I go to parties, I try to make something nut free and sometimes even gluten free if I can because I know how hard my little cousin has it with celiac's disease.  But when people offer you food, do you just say no and look awkward or do you take it and risk it?  Since a trace amount of almonds did make me react in the past, I don't eat anything I don't know the origin of currently.  It seems far too risky. 

Another thing is, how do you explain things to family and SO's in a way that makes sense?  My boyfriend almost put me in a terrible situation two weeks ago (unknowingly!) where he ate a bar with almonds in it and then kissed me without warning me or brushing his teeth.  I didn't have a reaction since it was a quick kiss and I got lucky with that, but he knew that I was allergic and it still didn't "click".  My Dad moans about having to move the nuts in the cabinets when I visit.  I don't want to be a burden to people but I also need to advocate for myself and thinking about it really stresses me out.

[YouKnowWho]

Personally for our family, dessert is off limits in restaurants (wheat, rye, barley, egg, peanuts and bananas).  We have a few places we go for desserts such as Burger King, Rita's and depending on the child, McDonald's.  But in your average every day restaurant, desserts are verboten.

Potlucks and dinner parties - unless the person in charge is totally aware of our allergies and what it takes to keep us safe, we take our own food.  My kids could honestly care less and most have been understanding about it (or at least had the good sense to eye roll in private, kwim).  The kids are used to taking their desserts to birthday parties to eat instead of what is served, this is just a broader extension of that.

Restaurants - I do have a looser comfort zone than others but at the same time, we have the "talk" and we are prepared to go if we feel that they cannot serve us safely.  That is not to say that we haven't had some pitfalls over the years.  For my oldest who is allergic to wheat, rye, barley and egg, breakfast out is a nightmare.  We had a trip a few years ago that involved two reactions in places that swore they could confidently serve him.  At the same time, we did discover a place that could.  We also had a reaction at Outback because the manager shared a certain dressing would be safe, he reacted and she said well it just has three ingredients - honey, mustard and mayo.  Ummm, those are not just three ingredients.  FWIW, I did ask to see an allergy chart and or ingredient list and instead she came out to say this dressing was free of egg after asking the chef.

I will say that we have a small list of restaurants that we can eat out together as a family and when we do find them, we eat out there like it's no one's business.  Some people prefer chains with clear allergy menus, some people prefer local businesses where they can establish a rapport with the staff.  We do a mix of both because we want the options for when we travel.

There are sites such as Allergy Eats that have reviews of restaurants locally as well as nationally.  I tend to work off that if I am looking for a specific kind of restaurant or traveling.  And since we have kids, we do tend to frequent way more fast food than I care to. 

The hardest part of this journey is that I have to be verbally outspoken to people I love and people that I don't know.  Very hard for this shy girl.  But at the same time, we are talking about life or death situations. 

And honestly, I know OCD has probably been a struggle for you but in some ways it may help to keep you safe.  Am I saying you should go all out and let it control your life, no.  But that checking and rechecking may save your life.

[rebekahc]

Honestly, your response to food seems reasonable and not OCD.  As allergic individuals, we have to be very cautious about our food in order to stay safe which may appear to be somewhat OCD to non-allergic outsiders.  The only time I think it becomes a problem is when someone who is NOT diagnosed with allergies decides they're allergic and avoids tons of foods unnecessarily.  We see that here sometimes.  Or, someone who is allergic to something but becomes so afraid of all/most food that he or she hardly eats.  We occasionally see that here, too.

As you learn about your allergies, you will develop your own comfort zone and eating will become easier.  I'm not trying to bash you, but I know it may come across that way, so I'm apologizing in advance.  IMO, hypervigilant does NOT equal eating an ice cream bar.  Ever.  Ice cream, candy and desserts are the most likely things to be contaminated with nuts.  We avoid them like the plague unless the brand and manufacturing process has been thoroughly vetted.  Homemade treats like brownies are something we never eat unless we make them ourselves.  Since you have asthma it is even more dangerous for you to have a reaction, so please don't take any risks.

As you become more familiar with which types of foods are most likely to be dangerous, eating out, parties, etc. will become easier.  While you're learning, it's usually best to be more careful and gradually ease up (if possible) later.  Most foods you love won't be completely off limits - you'll just need to work harder at obtaining them.  You'll need to do your research first.  There are many, many threads here in the manufacturers section that will help you find safe foods.  There's a good thread stickied at the top of the Peanut/Tree Nut section about unexpected sources of nuts - another good place to start.  Also, the people here love to help, so feel free to ask for recommendations of foods/products/manufacturers.

Unfortunately, I don't have any good advice for talking to family.  In my experience they either get it or they don't.  Sometimes it's just a matter of explaining the seriousness and the necessary steps to keep you safe.  But sometimes it means you have to bring all your own food, or even stop visiting.  When we were dating, my husband never ate nuts or peanuts if he was going to see me.  I think it's reasonable to ask that of your BF.  We also learned that the only time he can eat nutty foods is when I'm gone for several days because I can always tell if he's had them (since I have reactions to intimate contact).  Not too long ago, we found out that Chinese food without any nuts has enough contamination to cause problems.  He thought it would be okay (and didn't tell me he'd eaten it).  However when the itching started and I'm cussing him yelling what did you eat?!?  He figured out real quick that it was a problem. 

[Linden]

Hi Hoosier87,

I'm really glad you found this board.  The people here are wonderful. Really supportive and really, really helpful in learning to avoid allergens.  And yes, it does take a lot of vigilance and constant checking and rechecking.  In my experience, it isn't "hypervigilance", but it looks that way to some people because they are not educated and just don't understand life threatening allergies.  (They also tend to make assumptions about what ingredients are in food rather than read the label, which is a big problem.) This board has helped me save my sanity because the people here do "get it".

The manufactured food thread here is awesome.  It's put a lot of foods in my family's diet - things I thought we would never have again. There's also the cooking thread which has tons of allergen-free recipes.

[hoosier87]

rebekahc,

Yeah, I thought that was hypervigilance because that's what my allergist (at the time) had described it as.  I didn't have a "bad" reaction to the tests according to him, but my allergist back home was not satisfied with that explanation to the testing at all and said there is no "safe" reaction.  The BF is not going to be consuming nuts again soon.  He said it scared him so much that he won't even think about it unless it's on days we won't ever see one another (we're both grad students and have crazy schedules).  We basically pencil eachother in during the week at the beginning so we can work around it.  Talk about anal retentive!

I don't eat anything pre-packaged now unless I have verified it is safe.  Chocolate is the one thing I am having an impossible time with.  My therapist knows how much of a self-soothing thing it can be when I have a bad day and is encouraging me to find something that is not off-limits to eat, but I feel as though nothing is safe anymore and don't know where to find it.  All the local chocolate places are off limits.  I've called and talked to them about it.  It makes me sad.  Really sad.

Linden,

I'm going to look at the manufactured thread.  I need to find SOME things I can eat.  I also did look at the thread on other sources of nuts and read that in-depth last night.

I'm just trying not to let this rule my life because right now I am actually TERRIFIED of dying on a regular basis, which is not normal.  That is compulsive behavior.  However, the hardest compulsions to get rid of are those based squarely in fact or past fact, so it's something I need to get strategies to deal with.  If I feel like I can be effectively safe, I should be able to tell myself if I do all these things I will be safe.  I will always carry my epi pen, of course, but I won't think about dying all the time.

[YouKnowWho]

Hersheys bars?  (Hershey is one of those awesome labelers but keep in mind that a few of the plain bars share with almond lines - every label every time).

If you need chocolate recommendations though, I really suggest starting a thread but keep in mind that many others here are dealing with allergies beyond peanuts or tree nuts so make sure if you read a thread, you are keeping your allergies in mind.  Does that makes sense LOL 

My older son had a bad reaction because I heard about Smarties which is essentially the nut free version of M&M's manufactured in Canada/England.  It would have been fine if I gave them to the child allergic peanuts, but I gave them to the child avoiding wheat.  Big reaction and man, personally - I felt horrid.  I think I felt the sting of that one way longer than DS did.

[hoosier87]

YouKnowWho,

Thanks for the suggestion.  One of my friend's husbands has a tree nut allergy and rec's Scherffen Berger.  I will be trying those because they are made in a nut-free facility.  The Hershey's is something I would rather go without.  I just am not a huge fan but maybe when I am destitute and miserable enough, Hershey's will be an option.  I used to love Green and Blacks and Ghiradelli, but I know both are totally off limits.  Hershey's special dark is fine but shares a line with Almonds, so those are sadly off limits.

I feel a little better knowing ONE brand is safe that is also supposedly really good.  It would be nice to have a treat once in awhile, you know?  I also will be seeing a dietician at some point here because my therapist (who I am seeing Friday) is recommending it after our last session in conjunction with my shrink (who I spoke with yesterday).  Has anyone here found them to be a good resource?  He is thinking that they will give me some more food/diet options and help me feel a bit more control./

[hezzier]

Start with these.  Depending where you live you may have to order.


Guittard chocolate chips

allergy statement:  http://www.guittard.com/images/learn/faq/allergen2.pdf


Enjoy Life chocolate chips or their chocolate bars

Vermont Nut Free Chocolates




updated with current guittard allergy statement

[pitter patter]

I love Vermont Nut Free Chocolates!  We always put in large orders that include chocolate chips Skippers (a bigger tastier M&M) various creme filled chocolates and put them in the freezer. We recently tried their pretzel bark and the whole family loved it.