Winning the Food Allergy War?

Every day more and more children, and adults are diagnosed with allergies.  Food allergies, environmental allergies, seasonal allergies.  Oh, and don’t forget there is asthma and eczema included too.  My almost 8 year old, has all 3, plus asthma, and we went through a bought of eczema this past winter.  The child takes more medications than I do.  Inhalers, nasal sprays, and pills.  Packing her an overnight bag is like packing her a small pharmacy.  I am seeing this more and more with children, and even adults are having seasonal allergies who have never had them before.  It all makes me wonder WHY?

Scientists are doing a crazy amount of research to find out why, but no one really has a definitive answer.  There are so many theories out there… GMO’s, fast food, lack of breast feeding, eating the allergen during pregnancy, the rise of planned c-sections, & use of hand sanitizer – just to name a few.  The list goes on and on.  There are many experimental food allergy trials out there, with things like desensitization (ingesting small amounts of peanut flour).  Now they are saying to start children on foods with allergens as early as 4-6 months.  Before they could not have peanuts until age 2.  Do they really know what will actually help or are we all just guessing?  They claim that they are making great strides in the right direction.  Personally, it all sounds like a bunch of trial and error, along with lots of hoping that somewhere along the lines something will truly make a difference.

How do we truly know what will work to help win the food allergy war, until we know the cause of the war and what we are actually fighting against?  Until they find a cause and a cure, I am thankful for support groups, and other Allergy Warriors who are fighting this battle right along side my allergic child and I.

 

Explaining food allergies to your child

When my daughter was diagnosed with her egg allergy and life threatening peanut allergy she was only 18 months old. I didn’t quite know how to explain it to her. An 18 month old doesn’t understand about life and death, and it was not something I was ready to explain to her. I just told her it would make her very, VERY sick. We got her an allergy bracelet for those “what if moments” at the suggestion of her allergist, and told everyone who came in contact with her about her allergies. We even kept her out of preschool an extra 4 months until I was 100% sure that it would be a safe place for her. We gave her the Epipen practice injector to play with and showed her how to use it. We also made sure she understood she could not eat ANYTHING unless Mom or Dad said it was OK, or packed it for her to eat.

As she got older we had to explain death to her when we had to put our dog down, and again when her fish died. We explained that they both went to Heaven, which was an amazing, beautiful place that both our pets would love. It eased her mind on where they were going. However, as she got a little older I explained that if she ate peanuts she would get very VERY sick and could die. She told me it was OK because she would go to Heaven, and Heaven was an amazing, beautiful place. It did not convey the seriousness of what would actually happen to her, based on our description of Heaven. I finally ended up telling her that although Heaven was a great place to go, that she would not be able to be with Mommy or Daddy or Sissy anymore, and that would make me very sad, and I would miss her very much. I don’t know if this was the best way to explain it to her, but it did make her understand the seriousness of it, and she did not like the idea of not being with us. We have not had any family members die, so the concept of a person dying is not something she really comprehends yet.

Now that she is going on 8 years old we have emphasized more and more how very sick she can get, how she would have to go to the hospital, how her throat would close up and not allow her to breath, and how she would need shots (which she hates). I know it scares her, but it is a fear that I want her to have, to make her understand how very serious this truly is. I hope this fear will make her choose not to take chances on things she is not 100% sure of. This past Halloween, we made her go through her candy with us, and taught her how to read labels and decide if the candy would go in the safe or unsafe pile.

I don’t want her living in constant fear, but having a life threatening food allery is a scarey thing – VERY SCAREY, and fear may just save her life one day.

 

Where can gluten hide?

Recently, I posted about the strangest places that we have found gluten since living gluten free, and realized that there are a lot of places that people may not think about to check.  Here is a quick list of where to find it and how to avoid cross contamination at home.

First, is to obviously remove all your basic food products that contain gluten.  This will typically be your cereals, oatmeals, pastas, bread and bread based products.  But, also make sure that any opened spread you have, peanut butter, jelly,  jams, sauces or butter, that have been touched by a knife that has been put to bread get tossed.  There is no telling whether or not these spreads are safe since bread particles could have been transferred over.  This goes for cream cheese as well.  When in doubt, throw it out!  Your health is much more important that trying to salvage something.

Check your appliances!  Toasters and toaster ovens will never be clean enough to use safely again.  REplace them for peace of mind.  Also, check your pots and pans.  If there are scratches on your pots or pans that have previously contained gluten items, get rid of those too.  There is no way to be sure that you have cleaned every tiny crevice well enough that gluten is not hiding in there.

Cleaning supplies! This can be tricky, because many times, companies do not list their ingredients completely on the labels.  You will need to check your cleaning chemicals, detergents, dish soap, dishwasher soap and anything else you use.  If the product does not specify, call the company and find out.  Or, you can go with more specialized gluten free or all natural companies instead of conventional ones.  Just remember, routinely check your products because companies can change their formulas at any time.

Now it is time to check those bathroom products!  Make up, sunscreens, lotions, perfumes, deodorants, body sprays, soaps, shampoos, conditioners, self tanners, tanning lotions, hair dyes, even bug sprays.  Check all of these things, and be diligent in keeping up with any manufacturing changes.  They happen a lot in this area.

And probably one of the worst places gluten can hide, in is your medications and supplements.  Check all your OTC medications, everything from pain medicine, to allergy medicine, to cough syrup.  Usually medications that are safe will say gluten free on the label.  Check supplements too, especially kid vitamins.  If you are on prescription medications, be sure to ask your doctor about the gluten content of your medications.  Often, if  there is, your doctor can set you up on a different course of treatment to avoid it.  Just be careful about asking pharmacists, in my experience they often are not as well versed in medication contents and gluten.  Obviously, this does not mean that there aren’t some that do know, but in my experiences, I have often found that I am more well versed in the topic than they tend to be.

One more area…pet foods!  Depending on your level of sensitivity, it may be best for you to feed your pet gluten free as well.  I have heard of people having reactions from pets who eat gluten.  Often times it winds up being s skin reaction once the pet has licked the affected person.  This is not something that effects us directly.  But this is something that you will want to think about depending on the severity of your symptoms.

Hope this helps, please let me know if there are any places that I may have missed!

I didn’t teach her that…

I have two girls, and people have always told me that the younger child learns from the older child. I know that is true, because I have seen Bean trying to teach Bubbles the things she is learning in 2nd grade, and getting frustrated, because she is in preschool and just not getting it. I have to remind her, a LOT, that she was little once too, and didn’t know any of these things, but had to learn them as she got older.

Recently, we were at a local event and ran into a friend from Bubble’s preschool. He was eating cotton candy, and asked if she wanted some. She immediately looked at the other mom & said, “I am lactose intolerant.” I have never taught her to tell people. And she can have milk every now and then, and it does not affect her. I found it amazing how she just picked up on it, and did it herself, without having to be told. I am sure it is from hearing me constantly tell Bean to ask if it’s safe, because she has a peanut allergy. Although, I was a little taken back by her telling them that, I was also proud that she took it upon herself to make sure the cotton candy was safe. The other mom told her that the cotton candy did not have any milk in it, and it was safe for her to have. Most children would have just dug right into the cotton candy bag. I guess having an allergic sister has made an impact on her also, and she has learned to be cautious with food also.

Awareness in the Food Service Industry

It was another one of those nights tonight…

You know, the whole, hey let’s try and go out and grab something for dinner.  For those of you who can do this effortlessly, and without any kind of thought, I envy you…dearly. For us, it is a lovely game of first, finding somewhere safe, and then second, trying to find somewhere that my uber picky Bear will eat from.

After a long debate and thought process, we finally settled on somewhere.  As usual, once we were there and getting ready to order, I went through our typical “we can NOT have anything with gluten, so I need to know what your ingredients are” speech.    And this was met with the typical “Oh is this for an allergy” question.  I begrudgingly say yes, not wanting to get into how it is NOT an allergy (that is another post for another day).  But then, to my dismay, our server said they would have to go and ask someone else, and they would get back to us about what was safe.   It took quite awhile, and finally someone else came out to talk to us, with a large book that they told me contained all the items they had and what was in each item.  And I am NOT kidding when I say that this binder had to be 3 or 4 inches thick.  At this point, we explained that we did not feel safe enough to continue our experience, thanked the establishment, left a small tip for our server ( I used to waitress, so I feel that it is only right to leave a little something for taking up some time at a table) and wound up back home eating leftovers.

But here is my point, I just feel like if you work in an establishment where food is served, you should be knowledgeable enough to explain to patrons what is or is not in your products.  Not just for those with gluten issues or food allergies, but for anyone who asks.  People are becoming more and more aware of what they put in their bodies, and typically most like to know what they are eating.  I just find it amazing that in most cases the servers or counter staff typically have no clue what they serve.  Even worse, as in our case, the management did not even know what was in the products they were serving.  Um…what?  While I understand that this may be a paycheck for you, this could be a life threatening mistake for someone else.  I am not at all trying to downplay the need for us with food issues to do our homework…but it would be nice for places to start educating their staff on the make up of the their products.  Also, maybe a bit of education on the plethora of food issues that people can have.  It would be nice to walk into a restaurant and explain my situation and have it met with something more than a weird look.  A bit of extra effort on the part of restaurants could do wonders for their customer service, and open up their businesses to a whole new market of people who may have previously been unaware that eating there was a safe place.

Disease Labeling

I was talking to a friend earlier today and we were discussing some nutrition information and swapping recipes.  This is something we like to do regularly.  Some background…She has diabetes, and is very careful about what she eats, when, and what combinations of foods she eats at a time.  So far she has been lucky enough to manage her condition by diet and exercise, although doctors are still keeping a close eye on her.  Today, she said something that really got me thinking.  In our conversation, I was teasing her about how meticulous she was with her measurements when it came to food ( all good-natured of course).  And her reply was, “Well I am a diabetic, what do you expect?”.  I found it interesting that she, and many other people who have diabetes, identify themselves AS the condition, rather than a PERSON with the condition.

I then emailed a friend who has Celiac and asked her how she identifies herself.  She also replied that she, and many of the members in her support group, identify themselves as “celiacs”.  There is just so much about this labeling that bothers me.  There are many other conditions that are life long that people deal with all the time, yet they do not identify themselves AS the condition, they just say they HAVE the condition.  So what makes conditions like Celiac and diabetes so different.  Why are people relating themselves AS the disease?

I would really love to see people step away from this.  Yes, you may have a condition, and yes it may be something that you have to deal with for the rest of your life.  But, your disease DOES NOT define YOU!  You are the only person that can do that.  I think that the more we encourage terminology change (ie… I am a person with Celiac disease, or I am a person with diabetes) the more people with these afflictions will be able to feel more “normal”.

After I did some thinking, I called my friend back this morning and asked her why she identified herself in such a way.  She seemed surprised that I brought it up and was genuinely thankful for my observation.  She did not even realize the way she was referring to herself and her condition.  She agreed that it was much more empowering for her to be a person with diabetes, than a diabetic.  So, I encourage all of you to listen to when friends are talking…and if they do identify themselves as a condition they have… ask them why.  Many may be like my friend and not even realize that they do it.

I would love to hear feedback on this issue.   Please weigh in on questions and comments.  Let me know how you identify yourselves and why.  Or let me know if you think I am completely off track.  I would love to hear everything!

To party or not to party?

This weekend, I was faced with a situation that I had not faced before.  Bean was invited to a birthday party for one of her classmates.  The party was at her classmates home, and I do not know the parents at all.  Up until now, she has always been invited to parties at public places (I stayed in the facility just in case), or to houses of close friends who are very aware of her severe peanut allergy and know how to use her Epipen.  I was leery of letting her go to the party, but she really wanted to go.  Her friends from her class were going and she was excited to go too.  I did text the mom that Bean was coming to the party, and also that she has a severe peanut allergy.  I offered to bring something for her to eat, and also to bring her a dessert, in case the food would not be safe.  The mom explained it was just pizza, ice cream, and cookie cake.  I am pretty confident with pizza being safe for her, but the ice cream is questionable, and the cookie cake was really questionable to me. She said she would check the labels to make sure there is no peanuts.  I kept wondering if  she would consider “made on the same equipment” or “may contain” as containing peanuts?  Has she ever been properly shown how to use an Epipen?  I figured that when I dropped her off, I could double check the ingredients in the foods.  However, I did not want the mom to think I was being rude by double checking her.  Also, I didn’t know if she knew how to use an Epipen, so I figured I could always show her at drop off.  Would she remember how to use it though, if I showed her how to use it while everyone was arriving?  So many what-ifs?  I even considered asking if I could stay during the party.  I could double check the food, not have to worry about showing her how to use an Epipen, and help her out in any way I could.  I didn’t know if any of the other parents were staying though, and I don’t want to be considered a helicopter mom.  I just need to keep my daughter safe.  I even asked another allergy group I am on what they thought.  I got lots of advice from people who have a child the same age as Katrina, and how they handle it.  31 people responded and almost all of them said to stay there, and double check the labels.  I had my speech for the mom all worked out about me staying.  However, that morning my daughter woke up with a stuffy nose and complained that her ear hurt “really really bad”.  I took her to the pediatrician and she has a sinus and ear infection. She was bummed to be missing the party, but she ended up staying home.  It was almost a relief for me that she wasn’t going.  It meant I didn’t have to have an awkward conversation with the mom about double checking the food or staying during the party.

Conflicting information…

My grandmother was celebrating her 84th birthday this past Saturday at an Italian restaurant.  This restaurant has a few different locations, and the last time we had gone to one of their locations, we asked the server about any foods being unsafe for a peanut allergy. She sent the chef out to our table.  When the chef came out, he explained that the Alfredo sauce was unsafe for our daughter, and that he would make her food with marinara separately so there was no cross-contamination.  So, just to be safe, earlier on the day of the party, I called the restaurant to make sure that everything served was going to be safe for my daughter to eat.  She checked and said it was all safe for her.

However, when we got to the restaurant, they put out a menu of the courses.  One of the first course items was a walnut salad.  I questioned the server about it being safe, and he said that nothing on the menu contains peanuts.  I explained that usually other nuts have a “made on the same equipment” warning labels.  He said he would ask the chef.  A manager came to our table and again said that everything was safe.  However, a few minutes later, the server came in with a salad made without walnuts specifically for my daughter.  We really appreciated that.

One of the main course items was Fettuccine Alfredo.  My husband and I both both recalled the other location specifically saying the Alfredo sauce was not safe, so we did not allow her to eat that either.  We assume that both locations would use the same ingredients.

Our final course was dessert, and one of the two desserts they served was Tiramisu.  For those that don’t know, Tiramisu is ladyfinger cookies soaked in espresso and coffee liqueur layered with Mascarpone, dusted with cocoa powder and served with chocolate shavings.  The Tiramisu raised all kinds of red flags for me!  Are the cookies safe?  What about the chocolate shavings? These are things that I consider high risk for her, since so many of them “may contain peanuts” or are “made on the same equipment”.   We didn’t let her have any of that either.

She did get to eat all the other items that they served, so it was not like she didn’t get to eat.  She just could not eat everything they served.  Although I didn’t want her to feel left out because she could not eat everything, I would rather have her be safe than sorry.  Is it wrong that even though 3 people told me that the items were safe, I still would not let her have them?

I sometimes find it very difficult to explain to people that just because it does not “contain” actual peanuts (in it or on it), does not mean that other ingredients used in making the food are all safe and peanut free.

Is it worth dying?

People say that knowledge is power.  When it comes to my allergic daughter I couldn’t agree more.  The more I know about what is safe and not safe, the better I am at protecting her.

What if you get conflicting information or just aren’t sure about a product?  What if the ingredients label is missing?  What if the item is home-made?  The best advice I have gotten and can give is to just avoid the food/product.  Do not use the try it and see method.  It can result in a very bad reaction, including anaphylaxis.  So if I am ever doubting if something is safe or not, I always think… is it really worth letting her have a reaction, having to use her Epipen, having to call 911, and possibly dying?  Is allowing her to eat this food really worth her dying?  Kind of puts things in perspective, doesn’t it?

Applaud the Allergic!

My oldest daughter, Bean, was diagnosed with an egg allergy, and severe peanut allergy at 18 months.  That was the start of our journey of allergy doctors, carrying Epipens, and reading labels TWICE.  I worry about her at school, at friend’s homes, anywhere out of my site.  Not knowing any better, this became our norm.  Since she was so young when she was diagnosed and because she was our only child, we didn’t know any better.  We just played the cards we were dealt, and have managed to just deal with it.

In comparison, my younger daughter, Bubbles, is mildly lactose intolerant, but does not have any food allergies.  I have come to realize that having a child with and having a child without food allergies is such a world of difference!  It’s easy.  No label reading, no carrying an Epipen, no allergy doctors, and no worry.

Having a food allergy is not simple or easy or no big deal.  It is a huge deal.  It is terrifying to live with, and it’s a lot or work keeping the allergic person safe.  It may just become second nature to those who deal with it on a daily basis, but you are true Allergy Warriors and I applaud you!