Two Story Cottage

The One Where The Boy is Allergic to Food

Dear Friends,

We have some answers regarding Reid’s health.  Can I get an amen?

For most of his life, this kid has been throwing up with bouts of lethargy that just put him in a tailspin.  The bruising, the sleep disturbances, and the sensory sensitivities were all one big funnel of something.   I joke about the puke fests but really I just wanted to find what was disturbing my otherwise genuinely cheerful child.

reid_happy_personified

I went into our endoscopy in May, thinking for sure that Reid had celiac disease.  We had exhausted so many other options and it really made perfect sense.  We were going gluten-free and wheat was going down.  I was armed and ready to be the GF super-mom.  Give me the rice chex and your flour conversions.  I’ve got this, yo.

Yeah, I was wrong.  It happens.

The endoscopy showed that Reid has something called Eosinophilic Esophagitis.   I can’t say it either.  The nickname is EE or EoE.  It is an autoimmune disorder , essentially an esophogeal allergy where white blood cells storm the esophagus because it sees certains foods or environmental allergens as invaders.  The throwing up and other symptoms that we see are side effects of the body attacking itself.

Rock on.  We have a diagnosis.

Well, I should have held my hallelujahs because we are preparing for a journey that may well cost us our sanity.  In some cases, EE is easy to rectify.  Adults can take a steroid.  Sometimes patients only have to give up a food or two after seeing the allergist.  That was my hope.

I should have known, y’all.   I was all, “well, we don’t really have a lot of food allergies in our family.   Other than wheat, I can’t really imagine what he is allergic to.”

That is foreshadowing people.  The “I can’t really imagine” part.   I’d like to insert a belated face palm now.

Let me rewind to last week where we went to see an EE experienced allergist.  He did a combination of prick and patch allergy testing on Reid to help identify his issues and hopefully prevent false negatives or positives. After a few rough days, we had our answers.

reid_pitiful_collage

The boy is allergic to ten things.  TEN.  Definitively.  We can sing an allergy for each of our ten fingers to the tune of Ten Little Indians.  Which is no longer PC or relevant so Ten Little Allergies it is.  Only they aren’t little.

Cue the drumroll and call me Ryan Seacrest.   If this were live TV we would cut to a a commercial.

And the allergies are: Beef, chicken, soy, milk  & dairy, egg, almonds, walnuts, oat, corn, and white potatoes.

No, you cannot go into a restaurant and ask for a beef-free, chicken-free, milk & dairy-free, egg-free, almond-free, walnut-free, oat-free, corn-free, white potato-free menu.  Apparently they don’t have those.

It has taken me a week to process this.  I’m a weird anomaly that doesn’t react right way.   When Reid was in the NICU, I was freakishly calm despite the circumstances.  Last Friday, the allergist was trying to gently break the news and offer support, fearing crazy female drama.  I calmly nodded and smiled. It might have been a scary smile. Then the introductions began…

Hello, elimination diet.  Hello, dietician.  Hello, eating at home.

Goodbye, Chick-fil-A.  Adios TCBY.

Hello, there are too many allergies to remember and I am his mother.

Hello, notebooks full of dietary terms and ways to cope.

Hello, scary support group where people talk about tube feeding and elemental formula.

Hello, raise awareness walks and rubber armbands.

Hello, $200 grocery bill.

Goodbye, triple coupons.

I’m all about the positive spin people.  I can be the ray of sunshine on a cloudy day.  I’m just not quite there yet.

I keep holding fast to the life boat which is that we have our answer.   Of course, this “disease” has more questions than answers but I’ll take it.  We know.  We can do something. 

I just need to have my pity party first.

At least there is some humor in this situation.  Yeah, the boy can have wheat.

-Erin

 

 

 

 

 

Comments

  1. Wow. No wonder you didn’t have crazy female drama – that’s A LOT to process. I wish I had words of wisdom, but I’m at a loss right now. Glad you got a diagnosis, but I’m so sorry that you have to deal with this. Hang in there – take a well-deserved pity party, and embrace the support of those who can lend an ear or offer experience in dealing with a similar situation. Thanks for sharing. You will persevere.

    • Thanks, Jenny!!

      • Lauren Burns says

        You can do this!!!!!!!! My younger brother has a very similar food allergies. He is now seven and has been living through it for all his life. I am doing a school project on his disease and if you have anything you think i should say form a mothers point of view rather that a sibling’s i would love to hear it! I know you can do this and i believe in you!!!

  2. Oh honey. That is ROUGH. Good to have a diagnosis, but certainly you are allowed to take a moment to process. Good luck to you in the “adventure” ahead… will be sending happy “I can cope with this” vibes your way.

  3. I feel for you, my brother was allergic to everything. Hopefully he will grow out of a couple. Just a word of warning, depending how sever his corn allergy is, many toothpastes include corn. Hang in there and buy a lot of fish!

  4. Katie Jackman says

    I have been a long time reader of your blog… my heart feels for you. My daughter was diag. at 11 mths old with severe milk, egg, and peanut allergies (she broke out in hives) and my son is also allergic to milk. I remember the overwhelming feeling. Please know that you will get through this and it will get easier! Please feel free to email me if I can help with anything. And… he’s not allergic to coconut… maybe he can drink coconut milk and products?

    • We are going to try coconut! Thanks for the info!! I’m trying to make a list of people as resources – thank you.

  5. I am so sorry to hear that he is allergic to so many things! I will be sending good thoughts your way and if I come across any recipes that will work I will send those too! Best of luck!

  6. Sharon B. says

    Erin, so sorry to hear about how many major food groups Reid is allergic to. I can understand a bit how overwhelmed you must be feeling. I have many food allergies – many nuts, fruits, vegetables and spices. My throat closes up. I have to be very careful when eating in a restaurant, always carry an epi pen. I can eat very few sweets unless I make them myself. It certainly restricts my life. But hang in there. You will figure it out and it will take time to figure out what he can eat and can’t. You will have to become a rabid label reader because it’s crazy what foods are sometimes added to prepared foods and you will have to learn alternative ways of making different foods. For instance, you could possibly make bread using rice milk and margarine or shortening, but you have to check different brands to see what they use to make the margarine and shortening with. It sounds like your dietician will become your best friend. Look for recipes for what Reid can eat like pork, fish, lamb and rice and vegetables and fruit. You’ll have to check the ingredients of everything you use to cook with. For instance, soy and nuts are added to all kinds of foods that you would never think they would be in, like spaghetti sauce. You may have to write to food companies and list what Reid is allergic to and enquire if any of these items are in specific foods that company makes. It’s going to take a while to figure what you can safely use to cook with and it will be a huge change in your family’s eating habits, but at least you KNOW what is wrong and how to avoid the allergic reactions. That must be such a tremendous relief to know that you can control this symptoms from now on. It’s going to be a long haul, but all the work will be so worth it when you see Reid getting healthier!

    • Hi Sharon! Thanks for taking the time to write! You certainly have a lot of allergies to deal with. I’m thankful that we don’t have to worry about anaphylactic reactions – at least for now. The dietician did give me a lot of info about ingredients to watch for. I’m definitely going to be doing mostly homemade that is for sure. It will take a while – I’m glad I have the summer to develop a routine.

      I”ll keep you posted & thanks again for the info!!

  7. Wow Erin, that’s hectic. Take deep breaths and remember you CAN do this. As an individual and as a family you can live with this and so can Reid. At least you’ve found out now so Reid can start to learn what he can and cannot eat. Also, be thankful you live in a country where labelling is sooooo good. Here in South Africa the food labels are shocking! Sending love and warmest wishes your way. Stay strong. xxx

    • Thanks, Laura! I hadn’t thought about food labels elsewhere. They have made some mandates here that help with the cross contamination concern. This would have been a lot harder a few years ago! Thanks for the well wishes. 🙂

  8. Oh goodness..I’m fearful that your story may be mine in a few weeks. Our daughter is 9 and has suffered from terrible eczema since she was a toddler. We’ve been waiting for her to outgrow it like her sisters did but it is only getting worse. We have finally scheduled allergy testing (thank you for the pics by the way, we have NO idea what to expect and dd is FRIGHTENED to say the least). I’m terrified that they’ll come back with a list of foods that she cannot eat or something like “she’s allergic to – air”. We’ve been doing gluten free the last 3 weeks (just to see if it may be the problem) and it has been difficult to deprive her of graduation Open House cakes, birthday snacks, etc. We haven’t noticed a difference yet. I’m praying she isn’t allergic to dairy, since she is an incredibly picky eater and loves cheese, sour cream and cottage cheese. Or dogs….we’ve got one of those. Your family will be in my prayers because I can completely understand your pity party – I’m gearing up for my own in the next month.

    • Hi Crystal! Keep me updated on your daughter. Reid definitely has eczema also – it will be interesting to see if it disappears with the food changes. I hope your daughter isn’t allergic to a laundry list like Reid. I really think for most people it is only one or two things. We lucked out with the dog -he didn’t react. We weren’t about to get rid of our dog so that was happy news.
      The allergy testing wasn’t fun but it wasn’t terrible. It actually wasn’t as bad as I thought it would be to be honest. Getting rid of the food he loves is the hard part. I imagine that would be worse at 9! Good luck though!!!!

  9. Jessica Young says

    Hi- a friend of mine’s 3 year old daughter has that. She lives here in Charlotte. If you would like to contact her, I would be happy to give you info. She is a little further down the road and is pleased with her specialists/dietician/allergists.

    • If you could send me her email that would be great! Do you know if she is in the Charlotte support group? I might already have it. Thanks for thinking of me! -Erin

  10. Hi Erin–We have been through the “ugh…what now?” stage. Some of the best advice I got was to focus on what you CAN have, not what you cannot have. It made a huge difference for us! Also, even though you can still have meat, check out some vegan info–there is an incredible amount of info on living dairy- and even soy- free. It does take a bit of creativity. Start simple. Take your own food and snacks. Yes, cooking almost everything from scratch is time-consuming and can drive you nuts…but then it just becomes another habit…and it has been cheaper for us to eat this way instead of using convenience foods. Remember, the crockpot is your friend!

    • Thank you! Good thinking on the crock pot. I tend to use it more in the winter but I’ll have to look for crockpot -friendly recipes. I am discovering that it isn’t too hard to tweak a lot of recipes but it will take some experimenting! I agree with the “what you can have” attitude. I’m trying to develop that. 🙂 I’m trying to focus also on finding things that don’t have a lot of ingredients and just happen to be vegan.

      🙂

  11. My heart sank with this post. Your poor family! This is going to be tough.
    I’m praying for you.

    ~Crys

  12. Hi. We are 9 years into this same journey. It will be hard for a few years. I can tell you that it will get better, maybe even easier because it becomes your lifestyle. Today at 9 we have it “under control” and he is a healthy and happy boy.
    My son is allergic to peanuts, all tree nuts, eggs, everything with MSG (lots of vomiting with this one!), shellfish, sesame, corn, tomatoes, parsley, beef, pork, turkey, chicken, soy, peas, and carrots.

    Be encouraged! You can do this.
    Blessings to you and your family!

  13. Hello, Erin!

    A mutual friend asked me to take a look at your blog about Reid’s diagnosis. I have two boys with EoE. They were diagnosed in 2o08. I have just returned home from a patient education conference which is held each year by the American Partnership for Eosinophilic Disorders. You can find their website at http://www.apfed.org. I have asked Brenna to give you my contact information. I hope that you will contact me so I can help you get your feet under you and/or introduce you to the large eos community that has gathered on Facebook.

  14. Ohhhhhhhh my goodness. That is horrible Erin, I am so sorry.

    Are these allergies they expect him to have his whole life, or is there the possibility for him to grow out of some of them?

    I don’t even know what to say. I mean I guess he can have pork and fish. That’s good. Not sure what to do on the milk-front since milk, almonds, and soy are all out. And corn is going to be killer. Corn is in tons of stuff. 🙁

    I’ve gone mostly soy-free, so I do know that’s doable. And you don’t have to worry about gluten as you said. But yeah, you’re going to have a steep learning curve ahead of you.

    Hopefully, as it was with my gluten intolerance, once you figure out your tricks and alternatives, you’ll kind of get in a groove and know what to do.

    Will send up some prayers for you guys!

  15. Bless you, my friend.

    You have a steep learning curve ahead of you, that’s for sure. But you WILL be okay. You’ll figure out what Reid can and can’t have. You’ll find some restaurants that serve entrees that he can have, and you’ll enjoy eating out. And all the hard work will be worth it as Reid becomes healthier.

    I’m like you–I can be completely calm and drama-free in the hospital, physician’s offices, etc. Maybe it just takes me a while to process things, too!

    Let me know if you ever need to just vent about all of this. Chronic health issues are not easy, that’s for sure. Ours are different from yours, so I can’t offer any good advice for Reid’s situation, but I can sure provide listening, understanding ears if that’s helpful!

  16. Oh Erin, I’m so sorry to hear about Reid’s allergies. Not the news you were hoping for, I’m sure. I understand what you’re going through as I’ve dealt with milk, egg, peanut, tree nut and sesame allergies between my two boys.

    You’ve gotten and will get a lot of advice, but the best advice I ever received — which I’ll pass along to you — is to try to cultivate a “big picture” attitude that is oriented toward eventually getting as many foods as possible back INTO your child’s diet, rather than focusing on an “eliminating for all time” mentality. As a member of a bunch of different allergy communities, I’ve seen so many parents narrow their children’s identities and their own identities as parents to focus only on how to live without the allergens, which obviously is important at the beginning, but it’s not the end of the story. As our allergist told us on our first visit, “Adults with milk allergies are very, VERY rare. Your son likely won’t be living with this his whole life, and we want to make sure he lives with it for as SHORT a time as possible.”

    Our first allergist had the mentality of “When in doubt, eliminate it,” and no real plan for where to go from there. Everything changed for us when we started seeing Dr. Wood at Johns Hopkins. The range of foods our kids can eat has slowly but surely expanded, and we can see the light at the end of the tunnel now. The oldest may never outgrow his peanut allergy, but that’s a whole lot easier than having two kids who can’t eat pizza or cake at birthday parties. I will cross my fingers for you that Reid’s journey will be similar.
    xoxo

  17. My son started the Ketogenic diet 2 yrs to control his seizures and I remember having all the same feelings of sadness for what he wouldn’t be able to enjoy, and what our other kids would miss out on too. Once that subsides and we started to see the benefits of the changes we made, all of those fears faded away.It will be worth it, and after some adjustment you will look back and be so grateful for the chance to help your son.
    Good luck

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  19. A friend just sent me a link to your website and it looks like you and I are now mommy friends (like it or not)! My sweet boy has had terrible eczema all over his body since birth (he’s just about 4 now). We did blood tests and they all came back good, the allergy test, however….well here is our list : eggs, milk, wheat, corn, rice, rye, tomato, potato, celery, watermelon, mustard, peanut, English walnut, almond, hazel nut, coconut, ginger, shrimp, salmon, perch, bass, white fish, cod. Nice to meet ya!

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