Checking in with an update

Updates from members who have been successful in controlling their symptoms.

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alcyone
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Checking in with an update

Post by alcyone »

Hello, everyone!

It's been a few weeks since I've had a chance to post, but I wanted to say hi and let you know how things are going.

I'm now 7 weeks in with no gluten, dairy, eggs or soy (except for a trace amount I suspect from one of my meds) and doing very well. I am still holding firm to a very restricted diet (chicken, rice, potatoes, banana, homemade almond milk and a small amount of almond butter) and am okay with that, but I'd like to try to add another safe meat and vegetable soon. I tried sweet potatoes and thought at first it would work, but on the fourth day it finally bit back. I only ate a small serving each day, but perhaps it was still too much fiber for me. I am still having a few minor (but perplexing) symptoms, but I really can't complain.

Far more exciting to me than my own progress is how things are going for my boys. Jake and Michael have been gluten and dairy free for about a month now and it has been a game changer, especially for Jake. When we first made the diet change he went through a weird few days of what I guess was some type of withdrawal, but since then we have seen amazing changes. His stools are perfectly normal for the first time in his life. His appetite has greatly increased and we have been able to take him off of his appetite stimulant that he has been on since he was 15 months old. I can't tell if he's gained any weight yet, but I'm so thrilled to see him wanting to eat. Before the diet change he was complaining about tummy aches twice a week or so. He hasn't complained about any stomach pain in 4 weeks. We have seen several non GI related changes, including a big jump in spontaneous speech (Jake is very echolalic, and a lot of his talking has just been repeating favorite phrases or mimicry). His PPCD teacher has reported improvements in behavior and a sudden interest in potty training, something we've been working on for a long time with no progress. Michael has had some noticeable improvement with his eczema and his stools are also much more normal, and they're regular enough that we've been able to ditch his Miralax that we were having to put in his milk every day for the last year.

The diet changes weren't easy to make, but the rewards have been priceless. I have so much more energy now, and I have used most of it to begin the process of learning how to feed my family the RIGHT way. It was daunting at first, but I have had a lot of fun experimenting in the kitchen and have already found many great dinner options that please my picky kids and husband, and have started turning out safe, homemade cookies, muffins, snack bars, nut milks and nut butters that everyone likes. This week I'll be tackling crackers. Many of the recipe successes have come from Dee and Gloria, by way of Dee's kitchen, so I strongly urge any of my fellow newbies to not overlook that resource. The only downside to all of the good things happening in my kitchen is that I can't taste any of it yet, with the exception of the almond milk and butter, but I am looking forward to the day when I can.

Thank you so much for this amazing site, and the even more amazing people who make it what it is. I have spoken to only a few of you directly, but feel like I know so many of you. The knowledge, wisdom, encouragement and care that I find here is overwhelming. I know that neither I, nor my kids, would be doing as well as we are right now without the contribution from everyone in this community, so again, my heartfelt thanks to each of you. Wishing you all peace and success in your own journeys!

Love,
Erin
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Post by Polly »

Erin,

What a wonderful update! Thanks so much for sharing. As a pediatrician, I am following the progress of your kiddies with great interest. Please continue to keep us posted.

Love,

Polly
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tex
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Post by tex »

Erin,

You've written an awesome update. It's very inspiring to read about all of your accomplishments, and especially the improvements in your sons' health, and their lifestyles. Good for you, and good for them. Your sons couldn't possibly have a better mother.

We appreciate your kind words about this site, but you deserve all the credit for your successes, because if it weren't for your can-do attitude, and your willingness to adopt all the diet changes, and do all the hard work to make those changes work for you and your family, those successes never would have become a reality.

You are truly an inspiration. Thank you for taking the time to share your successes with us. I sincerely hope that your successes continue to grow, and your family continues to thrive.

Love,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
TXBrenda
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Post by TXBrenda »

Great news! Thanks for the update.
Brenda
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Post by Leah »

So wonderful to hear such a great update! You are doing an awesome job. I know that you too will also keep benefitting from your diligence.

Leah
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Gabes-Apg
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Post by Gabes-Apg »

Erin
thanks for taking the time to share your update and how awesome is the outcome for your boys! WOW!
Having them healthy and happy equates to less stress for you so it has/is totally worth any additional effort.

:bear:

Healing hugs for your gut, so you can expand your eating plan and enjoy the cooking/experiments.


And for any newbies skeptical about the benefit of eliminating gluten, here's the proof! The whole family can benefit!
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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JFR
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Post by JFR »

Erin,

What great news for you and your boys. The information that comes from this forum is priceless but it has to be implemented and that is what you have done. It's really inspiring to hear.

Jean
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Zizzle
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Post by Zizzle »

Wow, Erin, what an amazing update! You might find lots of recipes in the world of Autoimmune Paleo eating. There are so many blogs, cookbooks, Facebook pages, etc. teeming with interesting looking recipes. I hope you are able to join your family soon in safe eating. I have 2 kids and I know how hard it is to prepare 2 meals for the family!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
alcyone
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Post by alcyone »

Thank you so much for the well wishes, everyone! It's true that I am the one that implemented the changes, but you are the ones that helped me to understand WHY and HOW. Most importantly, knowing you guys are right here makes the journey much less lonely.

Zizzle - You're absolutely right - I learned early in my search for recipes that AIP was a great source that didn't need much tweaking. Also, my parents were vegan for a long time and I had some pretty good experience with egg and dairy free baking already, so I had the thought to seek out gluten free vegans for things like bread, muffins, cookies, etc. Even though I'm the only one who has to avoid eggs, I'm trying to build up a collection of good recipes now that we can all enjoy together later.
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Post by Zizzle »

Erin,
I didn't test positive for eggs through Enterolab or MRT, but I cut them out when I went AIP. I was having D after my weekend breakfasts that included eggs. I've adopted some thinking from the allergy community, in that I'm allowing some baked egg back in, which is considered much less allergenic. Many kids with anaphylactic egg allergies can tolerate baked egg. So I bake a little with eggs, eat Udi's bread which contains egg, eat macaroons with egg, and make meatloaf with eggs. So far so good...
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
alcyone
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Post by alcyone »

Eggs are a weird one for me. I am not symptomatic to eggs in any way that I can tell, but my Enterolab results showed that I am producing antibodies against them. On the flip side of that, my results showed that I am NOT producing antibodies to gluten, yet I am definitely reactive to it.

This disease just loves to keep us guessing.
CathyMe.
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Post by CathyMe. »

Great news Erin. Thanks for the update.
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Martha
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Post by Martha »

Great news, Erin! I'm so happy for you and your boys.

Love,
Martha
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Jeanemcl
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Post by Jeanemcl »

Great post. Thanks for sharing your success!
Jean
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carolm
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Post by carolm »

Erin, I bought this book (kindle version) and it's got recipes that my family requests, especially the turkey sausage and sage gravy, but there have been others I've enjoyed too. You might find it worth a look. Just a thought.
Congrats that your hard work is paying off for all of you.

http://www.amazon.com/Paleo-Comfort-Foo ... fort+foods

Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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