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{hello} is anyone out there?

April 5, 2011

Hello……hello…..

I don’t expect anyone to answer because I have seriously neglected this blog.

I have two reasons:

1) as a food allergic parent, I live the constant ups and downs and diligence everyday that I have shied away from writing the emotional charged stories that come out of the day-in and day-out. I seem to be strictly avoiding writing about the emotional toll of food allergies on our family.

2) My food club and group blog, From Scratch Club, has really taken off and that’s where I have spent 100% of my blog-writing time. I get to act as a normal home cook without sharing the painful struggles with having a kid that has a growing number of food allergies and other medical issues. All of my recipes are allergy-free but it seems to be a safer place for me to share. I feel less raw, keeping my stories a little less personal. One positive is I’ve been able to education a broader audience in food allergies. Always a good thing as we, food allergy caregivers, know knowledge of food allergies is the first step to a safe experience.
So I’m changing this blog up a bit. So much has happened since I last posted, both not-so-good (Miles developed severe allergies to sesame, peas and corn while also most-likely being diagnosed with EE, endoscopy in July) and good things (Miles disqualified for Early Intervention once off of gluten for 6 weeks. He grew in size and stature while also talking and moving up a storm- like a light switch was turned on!). The other very positive thing to happen in my life is that my fellow food-allergy mama friend, Kim (see pesto post below) and I have started a monthly support group in the Saratoga Springs area: Strict Avoidance: Caregivers of Food Allergic Kiddos. We meet on the third Monday of every month at the Saratoga Springs Public Library, Gasby Room at 7pm. We are not affiliated with any non-food allergy non-profit or local allergy medical practice as we are more about having a safe place to cry/vent/scream about the ins & outs of our daily lives with food allergies. We also share recipes and kitchen tips & tricks.

I’m going to recruit a few members to make this space a community blog where a few members will be sharing share stories, references, and kitchen tips/tricks and recipes.

Our next meeting is Monday, April 18th at 7pm! I hope to see you there!

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7 Comments leave one →
  1. April 5, 2011 11:08 am

    Hi Christina, I usually comment on From Scratch Club, but I have a food-allergic niece that I cook for – she’s my food-allergy muse. I think I mentioned her to you a while back; she’s allergic to dairy, gluten, eggs, tree nuts and peanuts, and was recently diagnosed with Crohn’s disease, and possibly celiac disease before the Crohn’s. She has two genetic conditions as well as a whole host of other issues that all are exacerbated by her food allergies. Anyway, if you wanted to read more about her and her family’s experience with food allergies, she has a website: Raising Ladybug. (http://www.raisingladybug.com/?page_id=2)

    • April 5, 2011 10:54 pm

      Monika!!!

      Of course, Hello!
      Thank you for sharing your niece’s amazing story and blog, I just subscribed to the reader. Amazing, I bow to her parents’ strength, love and determination. I have to tell you… It comes in waves but I have fits of panic (or a pit in my stomach) with a feeling that my husband & I (and his three doctors) haven’t found everything that is going on in his little body.

  2. April 5, 2011 12:38 pm

    So happy to hear you’ve started a local group – we do an online one here and it’s so cathartic to be able to vent and get suggestions. I’ll definitely keep checking your blog for tips.

    So great to hear about Miles’ (and yours!) achievements. : )

    • April 5, 2011 10:32 pm

      Thanks Lana for your support! The group has been amazing. I sorta wish we met once a week…its been a tough 12 months. I’m hoping Miles has made a turn for the better. I haven’t updated you since his yearly allergy testing. His chronic coughing, gagging, choking while eating was a SEVERE allergy to pea protein & sesame…he was tested 1/100th strength and blew up via skin test. He developed them over the past 12 months, as he used to eat both of those things. He’s following a full-legume allergy (soybean, peas, peanuts). Gotta start watching beans & lentils this new year. Oh Boy!

      • April 6, 2011 12:54 pm

        Whoa! That is scary and I’m happy that he is ok. Honestly, the idea that they can develop more allergies really worries me. It reminds me of our mustard allergy discovery… mustard! But oh no… the pea allergy rules out using daiya! Sigh.

  3. Dianna permalink
    April 6, 2011 8:36 am

    what is EE?

    • April 6, 2011 1:35 pm

      Hi Dianna. From the American Partnership on Eosinophilic Disorders on :

      “Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils (white blood cell) in the esophagus EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults… Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines. People with EE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema….In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve.”

      http://www.apfed.org/ee.htm

      For about 10 months Miles’ mealtimes have become an issue, increasingly during the past year Miles begun coughing, gagging, choking, vomiting (not much of that) having a hard time breathing when eating. After many behavioral modification, reflux medications, and other trial & error type techniques, we went back to Miles’ GI for possible diagnosis. Now that we have just realized part of his issue was a severe food allergy to pea protein & sesame, we are looking at CORN, and sadly red meat (cows) as the culprit of the remaining breathing/swallowing issues. His skin & blood testing came up clear for corn, which more than likely points to EE. Since stopping pea protein, sesame, and corn (all three are in HIGH doses in A LOT of his GF & allergy-free foods) his issues have gone down to almost zero. We also don’t feed him red meat anymore. Turkey, chicken and pork all seem to be good, for now.

      Due to his possible development of a full-blown legume allergy (hasn’t happened yet) we have to keep our eyes out for his future ingestion of beans & lentils…they could next to go, but the legume-issue is food allergy related, not EE as far as we can tell.

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