and the trouble appears to be…

Yesterday I shared how terrible Ashley has been feeling lately. Then last night my friend Tom Malterre called and questioned me about every supplement I give Ashley. And guess what we found? Wheat germ. Ugh. It was like having an out-of-body experience when I found it. I thought I must be mistaken. I wanted to deny it. Then I got mad. Then upset. It was so emotional.

Over the next couple hours I tried not to beat myself up for making such a crucial mistake, to no avail.

So I decided to allow myself to feel badly – to get it all out – to cry – and then to forgive myself and let it go.

All of Ashley’s sudden trouble began around the same time that she started taking this supplement. It doesn’t matter what brand it is – the mistake was mine. I didn’t notice the wheat, because I was only looking at the list of vitamins in the nutritional info. The ingredients (pictured above) were continued on the other side of the bottle.

It will take a very long time to get this out of her system, especially considering how long I’ve been giving it to her, and as Tom pointed out, now she’s depleted of things like zinc as a result. He also encouraged me to be happy that we figured it out, because now she can begin to recover. I am so grateful for his call and his friendship.

Just wanted to give you the update.
♥, Kelly

P.S. I also wanted to update my thoughts on Agape. While I have seen some major improvements in the last two weeks that Ashley has taken it, it has also made her very constipated. After studying the ingredients I can only imagine that this could be due to the xanthan gum, which I had not realized was in Agape when I bought it. Xanthan gum is usually grown on corn. So I may not be able to use Agape after all.

Comments

  1. says

    So glad you found out the problem! Twice I’ve discovered I either fed myself or my child small amounts of gluten or dairy and the guilt was horrible. Its at a much smaller level than what has happened for ya’ll but I get a glimpse of the grief. I pray things will get better for you!

    • says

      Kelly,

      My name is Kevin Reilly and I am the owner of Awaken Nutrition.

      One of my clients brought this post to my attention so I felt compelled to answer directly.
      Our Xantham gum is not corn based. None of our ingredients contain corn.

      Agape is corn free, gluten free casein free, soy free and tested for mineral toxicity.
      We package Agape in Glass to prevent any plastic toxicity.

      I thank you for your support and interest in Agape. I am extremely proud of Agape and we will continue to improve Agape so it addresses the needs of our clients.

      Kevin

  2. says

    Thank you and your beautiful daughter for going through it so that we can learn from it. You have just helped numerous people, so make sure she hears our big thank you!! The Paleo Mom just wrote a fantastic article about gut repair after gluten exposure, even though I’ve read dozens over the years, this was still a great informative reminder which I seem to need consistently to keep motivated:)

  3. says

    Yay! So glad you found it. Thanks for sharing about your emotions and how you dealt with them. The important thing is that you forgave yourself, something I struggle with (forgiving myself). Perhaps your discovery will help someone else :o)

  4. says

    I know how you feel. When I purchased a new bottle of vitamin d last year I noticed that it had soy and corn oil in it, neither of which I can have. I was taking what my nutritionist had suggested. I was so upset that I almost started crying in the middle of the store. I had been taking them for months!! Now you know and can move forward. A lesson to us all to be more thorough when reading labels.

  5. Donna Kaminski says

    I breast-fed my daughter, whom I thought had a dairy allergy, had to stop at 3 months because she was so physically upset and couldn’t sleep – I had been nursing every hour on the hour, she would sleep 15 minutes and wake screaming – for 3 months! I did not know until she was ten that she has Celic disease, the ‘colic’ she was diagnosed with was gluten intolerance. I had been eating wheat, but not dairy, the whole time. I felt horrible. I was the source of her suffering. I had stopped breast feeding her, put her on goat’s milk and made my own pureed fruits and veggies. She ate, slept and awoke happy and thrived. Until she was four and my mother-in-law introduced her to bagels and cream cheese without my consent. The wheat cycle started again as we thought it was the dairy causing her eczema, hair loss, insomnia, migraines, skin issues, psoriasis…once we discovered it was wheat/gluten, we got rid of those offenders, then addressed the Candida overgrowth. She is living gluten free and mostly sugar free now and doing much better. I feel better now that she is better. We do all we can for our kids, we love them so!

  6. Kiki says

    I hope you have forgiven yourself. You have worked SO hard for your sweet child! I am sure your suggestion to read the entire label will help many others out there. I have a suggestion for the families who hunt and have their bounty made into sausage or bratwurst. The spices that our local butcher shop used had hidden gluten in it. It was one of the “natural ingredients” on the label. I only found this out by contacting the manufacturer and having them do research on what exactly are their “natural ingredients”. Now I won’t eat anything that does not specify what exactly is in it.
    I pray for speedy healing, for you both!

  7. Jill says

    We have ALL been there! I know the guilt and the heartache, but I am also so glad you found the cause. Such a learning lesson. I have learned almost everything I know, the hard way. I can’t wait to hear how much better she is doing now though.

  8. says

    Kelly, I have done this too. My son gets very sick with gluten, and when he has a reaction to something that I have given him, the guilt is overwhelming. So many times we overlook what is staring at us in the face. So concerned with certain things that we slip up. But she will get better. Your friend Tom is right. At least you found the reason, and can rectify it. And he is also right in that, at least now you know and can start the recovery! Because the sooner you start the sooner she’ll get better. :) Try not to beat yourself up too much.

  9. says

    Ah Kelly. Hooray for getting to the bottom of it, I hope you see some improvements soon! I’m sending you lots of self love Kelly. You’re an AMAZING momma.

  10. says

    Im so glad you all figured it out. I was just telling my husband about Ashley this morning. This will be a reminder to us all to checking everything closely. I hope Ashley recovers quickly.

  11. says

    She’ll start feeling better now. You’re an awesome mom so don’t feel bad about it. Xanthan gum messes with my insides so it may be a good call to eliminate that one as well.

  12. Jessica E says

    I follow your blog not only because you share your yummy recipes that are appropriate for our diets, but because you are an authentic human being who found her path to healing by looking into her children. While my daughter is not on the autism spectrum, it was only due to my inner knowing as a mother that determined her reaction to gluten and dairy. Even a full panel allergy test didn’t detect a “wheat” allergy. But if you could see her eyes after a stack of pancakes, and her delay in processing…you would get it too. It was this awareness that caused me to change our diets and improve my own health ten-fold as well.
    It’s been a hard road for us – even without the autism. Groceries are more expensive, prepping whole foods is time consuming and I also run my own business. Some days, I want to throw in the towel and eat a whole loaf of hot rosemary bread from Costco. Some days I do. Or I let my daughter eat banana bread french toast because life is so short, and if her food allergies don’t kill her a bus might. Seriously. There should be more support for mothers of kids with food reactions, and for moms with food reactions as well! But then she eats the french toast, or a pizza in some road trip town that doesn’t know what gluten even is, and we fight for days because she’s an emotional wreck – along with being in the bathroom constantly. And I cry, and bang my head against the wall, because I’m the mom and I should have known better and I did this to my kid by allowing her to cheat. But then I get over it. Because I have to scrape myself up and get my nose back in the cookbook and clean up.
    So, thank god for people like Tom who are out there learning and teaching us, and for YOU – and think about all the people you just helped through your own learning process. You help us every day – read through your comments and let us help you as well. You are an amazing mother who has had a hand in healing many more children then your own.

  13. Jessica E says

    I follow your blog not only because you share your yummy recipes that are appropriate for our diets, but because you are an authentic human being who found her path to healing by looking into her children. While my daughter is not on the autism spectrum, it was only due to my inner knowing as a mother that determined her reaction to gluten and dairy. Even a full panel allergy test didn’t detect a “wheat” allergy. But if you could see her eyes after a stack of pancakes, and her delay in processing…you would get it too. It was this awareness that caused me to change our diets and improve my own health ten-fold as well.
    It’s been a hard road for us – even without the autism. Groceries are more expensive, prepping whole foods is time consuming and I also run my own business. Some days, I want to throw in the towel and eat a whole loaf of hot rosemary bread from Costco. Some days I do. Or I let my daughter eat banana bread french toast because life is so short, and if her food allergies don’t kill her a bus might. Seriously. There should be more support for mothers of kids with food reactions, and for moms with food reactions as well! But then she eats the french toast, or a pizza in some road trip town that doesn’t know what gluten even is, and we fight for days because she’s an emotional wreck – along with being in the bathroom constantly. And I cry, and bang my head against the wall, because I’m the mom and I should have known better and I did this to my kid by allowing her to cheat. But then I get over it. Because I have to scrape myself up and get my nose back in the cookbook and clean up.
    So, thank god for people like Tom who are out there learning and teaching us, and for YOU – and think about all the people you just helped through your own learning process. You help us every day – read through your comments and let us help you as well. You are an amazing mother who has had a hand in healing many more children then your own.

  14. says

    Wow, a similar thing happened to me recently. You’ve probably done this, but giving your child digestive enzymes that digest gluten is very important at a time like this! It will help get rid of whatever’s there!! Get a good- quality one from a naturopath–they’re expensive, but worth it! Good luck!

  15. says

    I don’t have children but it sounds like you do so so much for your family every day! To care for a child with autism seems so difficult. I hope you can not only forgive yourself but appreciate yourself for doing such a great job, even though you’re not perfect (no one is).
    On another note I’ve certainly been educated at the link between diet and autism! It’s very powerful. I’m fighting my own health battle and this was an important reminder of the power of food.
    All the best and I hope you and your family recover quickly from this event, both physically and emotionally.

  16. says

    It’s so easy to do. I grew up scrutinising food labels because my brother is anaphylactic, and despite this I have glutened myself several times. Now I have my daughter I’m terrified that she is going to be coeliac as well. I cannot imagine glutening my child. Hugs to you.

  17. says

    Oh, Kelly–wow! First and foremost, rejoice in the fact that Tom helped you figure out the problem and now you can move on to getting Ashley back to herself. Second, as everyone has said, you are an incredible mom. Sometimes we just miss things. Only in hindsight do they seem obvious. Like you said the other day about the healing kits, we’re quick to give answers and advice to others, but often forget things when looking to ourselves as resources. Last, think how many people you have helped by sharing this post. Some folks dismiss the power of minute amounts of gluten, but as you’ve shown by sharing Ashley’s story, the effects are so very real and devastating. Sending you lots and lots of hugs, dear, and sending lots of healing hugs to Ashley!

    xo,
    Shirley

  18. says

    We go through every item with a fine tooth comb looking for ingredients our children can’t have, it is so easy to accidentally overlook something. You are such an amazing mom, Kelly. I know I don’t comment very often on your blog, but I’ve been following you for a long time. It’s very evident you would do anything for your beautiful girls. Kudos to you and Tom – I’m so glad you figured it out! I’ll be thinking of your daughter – and praying her recovery time is swift. Lots of love to your family.

  19. Susan W says

    I’m so glad you figured it out! I did something similar to myself. I have Crohn’s Disease and gluten will put me into a flare and keep me there for months to years. I had finally gotten into remission after we figured out the problem with gluten and had been doing fine for about a year when I started taking a supplement that had gluten in it. I didn’t realize it was the problem for months but by the time I did it was too late. I had developed abdomenal fistulas around my stoma because of the inflamation of my intestine at the stoma. It’s back under control with the help of medication and being more careful to look for gluten in unexpected places.

  20. says

    Oh gosh. So frustrating. I am so sorry. I had a similar experience recently. Besides Celiac I also have A.S. (ankylosing spondylitis).
    I hate taking pain killers, but there are times when it’s a must. So, I was taking Advil liqui-gels.
    Guess what, MADE WITH WHEAT!
    I looked on their website, but didn’t drop down to the specific kind.
    I hate it for you and your sweet girl. Praying it’s out soon.

  21. Anonymous says

    Thank you so much for sharing your story. You have helped our family a lot.

    Question: is constipation a side affect of xanthym gun? I have not heard this and constipation is an ongoing problem here.

  22. says

    Of course you weren’t intentionally giving her gluten, but I understand that the hardest thing to do is forgive ourselves. I’m glad you’ve found a solution though, and from now on Ashley can heal again and enjoy herself. Make sure you enjoy the good things and take care of yourself too! Glad you’re both on the mend. Take care!

  23. Elese says

    Kelly, you work so hard for your family’s health, and are such a sweet, diligent, gifted mom. Please do not beat yourself up over this. Everyone makes mistakes, and missing an ingredient on a label can happen to anyone. Your little girls and husband are blessed to have such a loving, hardworking mom/wife. :)

  24. Anonymous says

    Spunky Coconut,

    My husband who is a Dr. of Nutrition told me the vitamins used in the bottled supplement Agape is synthetic vitamins, made in a laboratory with chemicals and the body cannot properly absorb them and could later do more harm than good. I wanted to inform you because I know you want to give your children the best and see them healthy. God Bless you. Take care.

  25. says

    i’m so glad you found the problem. i know you probably get a lot of suggestions for healing but i really hope you’ll check out the protocol at

    http://www.uniquehealing.com

    this protocol uses high dosages of probiotics and bentonite clay to heal everything from autoimmune illnesses, allergies, addictions and neurological issues such as autism. i’m doing this for an autoimmune illness. other people use probiotics and clay but not at these dosages. here’s a video about using this for autism:

    http://www.youtube.com/watch?v=jH1DMtQKEpo&feature=plcp

    there are many youtube videos about this program you can check out. i wish you the best!

  26. says

    My children are also gluten and dairy-free for sensory processing issues and toxicity, not related to autism spectrum disorders. Our home has been gluten and dairy free for quite some time now, yet I still accidentally bought something the other day with gluten in it (a frozen treat I normally don’t buy, but decided to be a fun mom, thinking I carefully checked the ing. list). I experienced the same emotions you did, although perhaps on a smaller scale since my children’s reactions were not so severe.
    I just wanted to say that in a culture where it is so so hard to actually avoid things like gluten and casein, not even essential to the human diet, you should be commended for the job you have done as the protector of and warrior for your children’s health. There is so much out of our control and our society is not set up for easy healthful living. But you are amongst the many valuable pioneers for health! Thank you for your candor and for posting this!

  27. Anonymous says

    We have all done this, and more than once. Last Thursday I bought something that I carefully screened for gluten, but skipped right over the corn, which I also can’t eat.

    Please, please, please remember all the times you have done it right! Those times far outweigh the few slip-ups that happen.

  28. Amanda says

    Glad you found it. The guilt is so hard to deal with. I’ve been there and feel for you.

    We also use Agape, but haven’t had the constipation problem. My son’s doc is Dr. Schneider that developed Agape. I’m sure she would like to know of the side effect your daughter is having. You might even be able to call her office and see if they have any other ideas of what might be causing it.

  29. says

    Oh NO! We’ve had a few moments like that here as well, unfortunately. Maybe this is a little strange to say, but I know last time I allowed some hidden gluten in our diet and my son didn’t feel well, I was so mad at myself- BUT- It reminded me that I really am working for his good, and that all of my strivings are truly helping and protecting him. You’re a wonderful mama!

  30. Anonymous says

    Hi Kelly! I’ve been reading your blog and using your recipes for a couple of years now. I’ve never commented before, but this post touched my heart. Even though your readers only get a small glimpse of your life, it’s easy to see what a terrific mother you are and how devoted you are to your family. I’m glad you figured out the problem with the pills, and I think having a good cry and then forgiving yourself is exactly the right way to go. I’m not a mother (yet!), but if I were I would hope to be even half as loving, kind, and dedicated as you.

  31. Anonymous says

    Hi Kelly,
    I have used many of your recipes and loved them all! I did want to share with you that I am a consultant with Arbonne and we have supplements that are vegan and formulated without gluten. If you’re interested in checking them out, my website is allin.myarbonne.com. Thanks for sharing so much of your life and experiences with us here! You’ve made life more bearable for me…having to go gluten and dairy free!!
    Dawn Reed

  32. says

    Hi Kelly I am compliling a blog post on sneaky gluten, and I’d like to provide a link to this post if that’s ok with you.
    I won’t actually be using this post in any form exept via link referencing you and your blog name.
    If it’s not ok, just drop me a line and I’ll remove it.

    Rachel @ twolicious.blogspot.com

    thegfcookie@yahoo.com.au

  33. Anonymous says

    I love your recipes! And don’t beat yourself up. Anyone dealing with this sort of thing has made similar mistakes. I know I have – MANY. I think the main thing is to learn and move forward. Just know that you are not alone in this. I too have shed some late night tears! We give our son 5HTP and it is a life saver. Amazing the things that are produced in the gut (like serotonin!). Thank you again for sharing your fab recipes!!

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