New here and overwhelmed and so sad

Posted on: Thu, 05/28/2009 - 8:28am
beingmommy's picture
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Joined: 05/28/2009 - 15:19

Hi,

My DS is almost 2 and he was just diagnosed yesterday with peanut and sesame allergies. He is also gluten intolerant, possibly a celiac.

I am overwhelmed with this new allergy stuff. Being gluten intolerant (he was diagnosed with that last fall) has been frustrating and inconvinient but these new allergies are so scary. The threat of anaphylaxis just worries me. He had a very bad reaction to hummus last month (immediate violent vomiting and hives). We just got EpiPens yesterday.

How do we cope? How do we find foods that are gluten/peanut/sesame free?

I am so sad for my DS. Peanut and sesame allergies are rarely outgrown, right? And sesame isn't condsidered a top allergen so bascially, any store bought food could be contaminated and doesn't have to be labeled? And I know his gluten intolerance if it is celiac, is lifelong as well. So basically, his whole life will be about what he cannot eat and the threat of fatal reactions. It is so unfair for him!

Posted on: Thu, 05/28/2009 - 9:45am
BestAllergySites's picture
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Joined: 03/15/2009 - 21:46

Beingmommy-I'm so sorry to hear of your son's diagnosis. It sounds as if you could use a big hug right about now.
I know it is overwhelming. My son is now 6 and was also diagnosed just shy of 2 and while there were signs-it was like a grieving process for us. We were in shock, angry, sad. What you are feeling is all very normal.
My son does not have wheat issues but is allergic to pnut, tree nuts, eggs, sesame, and whole soy. So.... I know what dealing with multiple food allergies is like. Sesame and soy can be hard ones.
You are right, sesame is not a top 8 ingredient-so labels can be of concern but with time you'll figure out how to work around products that might have sesame.
You might have to learn to home bake or find products made specifically for allergy sufferers in safe facilities.
I developed Best Allergy Sites for people exactly like you-feeling at a loss and looking for safe products. Feel free to stop by and take a look.
In the meantime-take a deep breath and hang in there. It doesn't seem like it, but it will get easier.
I'm going on 4+ years now and really feel good about where we are at. Do I have scary or bad days? Sure. But if you educate yourself you will empower yourself.
It's okay to feel sad and lonely about it-but know there are others here that get it, have been through it, and are here to support you and answer your questions. You'll get through it!
Feel free to ask me any questions at any time or to email me.
Hang in there!
Ruth

Posted on: Sat, 05/30/2009 - 8:15am
beingmommy's picture
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Joined: 05/28/2009 - 15:19

Thank you for the info! I will check out the site.

Posted on: Mon, 06/01/2009 - 6:44am
actonshanks's picture
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Joined: 02/04/2009 - 12:38

My heart goes out to you. When I found out that my 18-month-old son was allergic to peanuts, some tree nuts and sesame seeds, I felt very similar. I cried for two days straight. It's been more than a year now, and we are doing fine. We are working with Dr. Li (from Mt. Sinai) and he is no longer allergic to sesame seeds and some tree nuts. We are still working on the peanuts and a few other tree nuts.
There is a lot of research out there right now so there is hope for the future. We are sending hugs your way.

Posted on: Mon, 06/01/2009 - 9:23am
beingmommy's picture
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Joined: 05/28/2009 - 15:19

Thank you! You do give me a little hope he might be able to outgrow one of these. I know chances are slim since both sesame and peanut are hard to outgrow but it does happen and hearing that your son is no longer allergic to sesame helps.

Posted on: Mon, 06/01/2009 - 10:29am
actonshanks's picture
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Joined: 02/04/2009 - 12:38

I am not sure how much JoJo outgrew the allergy as Dr. Li's herbs cured him of his allergy. She is the allergy doctor at Mt. Sinai who is testing the herbal formula that blocks anaphylaxis. She is doing human trials right now. She has us on several different types of herbs, not only to protect JoJo, but also to reduce his allergy levels. You can read about FAHF-2 at http://www.aaaai.org/media/jaci/content.asp?contentid=8491
J

Posted on: Mon, 06/01/2009 - 2:46pm
beingmommy's picture
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Joined: 05/28/2009 - 15:19

Fascinating! This gives me more hope!

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