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Bobbie Jo

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Bobbie Jo Rookie
Bobbie Jo
Posted

I can't thank you all enough - the people who have posted hundreds of time on this site, the ones who have written books, created websites, children's books, made zillions of phone calls to companies... My family and I are reaping the benefits of all of it as newly diagnosed gluten sensitive, possibly Celiac Disease people.

More than once I have been brought to tears as I have read your encouragement to others, your years of being undiagnosed, and shared with you the frustrations of dealing with doctors who just don't get it and make us feel less than what we are.

And it all began because of Carol Sidofsky, a wise former nurse, who I met online (her website below), and who encouraged me to consider that my repeated bouts with vocal cord dysfunction, diagnosed for years as asthma, was triggered by gluten exposure. Especially since I almost passed out in a pizza place from a coughing attack. Carol's persistence broke through my denial. Through diet elimination for me, and Enterolab testing for my kids, we have a diagnosis and an explanation for decades, actually generations, of stomach cancers, IBS, strange rashes and my sweet 8 year old girl who has had a bloated belly all of her life.

I am so relieved that I do not have to suffer this alone, as so many of you have before this site and other support systems like it were created.

Anytime I have a question, I just type it in the search engine, and you all have hashed and rehashed it over, leaving a legacy of advice, support and encouragement. It has been a lifeline for me! Especially since my kids' pediatrician and my asthma/VCD doctor do not support me at all.

After only TWO months gluten-free, my kids are not the same. My 10 year old son has energy he never had. My daughter is actually paying attention in school and coming home with a score of 102 on her spelling tests - she never did that. She's done that 3 times now. Her memory is just sharper. They are remembering things I tell them to do - shocking! My son was always labeled "absent minded professor" by teachers, and he drove us nuts with his fading away. But that is going away! He's emerging as a different little boy! More attentive, more engaging, more light in his eyes. My God - this amazing.

And just this morning, I noticed my daughter, who is unusually short, looked taller. I took the kids to their growth chart to measure them, and they each had grown one inch in just 20 days!!! They were smiling like it was Christmas.

Do you realize what all of your work, attention and care mean? You are helping to break GENERATIONS of problems. You are saving lives! Improving lives! I know you all know this, but you could just go on your merry way and keep all info to yourself. But instead, you answer the questions of newbies, the same questions, again and again and again. Thank you! Thank you to Scott for starting this website!

We got some gluten-free books in the mail yesterday and the kids ripped open the box and each found a quiet place to sit and absorb everything. The "GFKid" even helped prepare my son for what candy he could and could not eat for trick or treat night tomorrow. And a book about a little girl named Emily with Celiac Disease enthralled my daughter, and we even took the book to school today and read it to her 3rd grade class.

And Danna Korn - I got her book today about her family's journey. When I read the part about not needing to take out a third mortgage to feed my children I just broke down and cried. Thank you Danna.

And thanks to those who have posted great ways to live gluten-free on a budget.

Okay - I am starting to sound like an award show.

Just thanks you all.

Before all of this, I had told my kids we would reintroduce gluten after 3 months to see how they would respond. They had been carefully planning their gluten (glutton) day. But now, there is no speaking of it. They know how much better they are doing.

Keep up the awesome work - especially the ones who have like.. thousands of posts listed under their name!!!

God Bless.

Here's to the gluten-free Life - long live us all, happy and healthy, and actually blessed for eating foods better for us anyway. The gluten-free Life is a good thing!

Carol's site that I first went to as I researched my doctor diagnosed Vocal Cord Dysfunction:

Open Original Shared Link

We love Carol!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Happy to hear how well your young ones are doing. It is amazing how much this disease impacts. News like yours about how your life and theirs has improved really brightens the day and gives hope to those still struggling with the diagnosis. I am glad we here were able to help. Thanks for posting.

cassP Contributor
cassP
Posted

hi bobby jo :)

glad u found this forum- everyone here is so supportive & i know it has been a lifeline for me when i felt completely alone in my struggle... i wish i had found it YEARS ago.

your kids sound like really great kids!!! how lucky u are that they're so excited about their new lifestyle! i didnt know there was a kid's book about Celiac- i LOVE that-

happy for u!

SGWhiskers Collaborator
SGWhiskers
Posted

Thanks for your post. I'm a speech pathologist and will be excited to see what is on the site you suggested. I've been reading lately about VCD being autoimmune, so it does not surprise me that gluten is a trigger. I don't have any VCD patients in my practice right now, but I have a colleague who treats many. I'll be passing on what I learn to her. And now, the thanks goes to you too for educating and helping others.

Bobbie Jo Rookie
Bobbie Jo
Posted
  • Author

Thanks for your post. I'm a speech pathologist and will be excited to see what is on the site you suggested. I've been reading lately about VCD being autoimmune, so it does not surprise me that gluten is a trigger. I don't have any VCD patients in my practice right now, but I have a colleague who treats many. I'll be passing on what I learn to her. And now, the thanks goes to you too for educating and helping others.

Carol is just going to love hearing that.

Thank you!

eatmeat4good Enthusiast
eatmeat4good
Posted

Thank you so much for saying so well what I have been thinking/feeling every night of my first 30 days being gluten-free.

I've been reading this site every night and am so thankful to all who post.

There is nothing like having a resource that is endless and that is what I feel I have found here.

It's very lonely to not be believed by friends or family and particularly humiliating not to be believed by Dr's. But here I feel I have found a thousand friends and soulmates and I am very grateful for all the time you have all invested in writing your experiences for the rest of us.

I was sick for years and misdiagnosed with fibromyalgia...I used to lay in bed unable to move for pain.....

slowly nibbling.... on soda crackers... to deal with the nausea...or so I thought.

I had daily migraine headaches and depression for 7 years.

I am self-diagnosed with the help of all of your posts ...and gluten free one month...and unbelievably almost completely relieved of all symptoms with the exception of lingering bone pain.

I often think as I go through my day not feeling ill....

"I wish I could thank them enough."

"I wish they knew they saved my life."

So thank you all for the lifeline you threw out to me for I was really lost.

I do not know if I am gluten- sensitive, gluten-intolerant or have Celiac.

But I am a very grateful ex-wheat-eater....well into recovering because people take the time to write posts.

I can never thank you enough.

  • 3 weeks later...
Bobbie Jo Rookie
Bobbie Jo
Posted
  • Author

It's very lonely to not be believed by friends or family and particularly humiliating not to be believed by Dr's. But here I feel I have found a thousand friends and soulmates and I am very grateful for all the time you have all invested in writing your experiences for the rest of us.

I can never thank you enough.

EatMeat4Good-

Your post really made my day, just because it's a happy ending story. I'm so glad that you have found some answers - on your own! I am praying for you to continue to get healthy - and get support from people in your daily life.

You know, my family thought I was nuts. I told them I thought family symptoms decades back and currently are related to gluten. I was met with quiet disdain.

But one nephew was going mad with a rash and finally decided to go gluten free and got better. He shocked everyone! So then another nephew got tested - positive, a sister stopped eating wheat and felt better.. and the chain is continuing. So - we are joking about having a gluten free table at Thanksgiving.

So - God Bless to you.

Thanks for your post.

Have an awesome gluten-free Day!

Bobbie J.

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bman34 Newbie
bman34
Posted

Great Post! Very inspiring. I'm happy for you and your family. I've had the same problems with Doctors before. They seem to have trouble digging down deep into an issue without the patient's persistence. My Doctors over the years have just blamed my stomach issues on poor diet, and being overweight. Which doesn't contribute to people feeling good in general, however I know people that weigh way more than I do and they have hardly any issues with their stomach! Thankfully I'm an engineer so my last meeting with a doctor I listed a laundry list of symptoms (all which match with celiac), and he suggested I stop eating wheat. So far It has been working. I feel like someone turned the lights on in my head, and I just feel much different in general. The fog that has been there so many years is gone now, and thing seem to be running on all cylinders.

Anyway.. I have gone into too much of a tangent. Congrats! Thanks for your post!

Skylark Collaborator
Skylark
Posted

What a great thread. Even those of us with high post counts often have questions and concerns and find support in this great community. I am grateful to celiac.com for providing this board.

anabananakins Explorer
anabananakins
Posted

That was a lovely post. I'm so glad things are going so well for you. And I totally agree about how wonderful and supportive this place is. It made a huge difference to me too. All the best to you and your family!

FooGirlsMom Rookie
FooGirlsMom
Posted

What a blessing that you found the solution to your children's issues EARLY. You have saved your children years and years of suffering from health issues, low self esteem due to attention issues, etc. They can now reach their potential in life. We owe many thanks to the people who dedicate their time to helping, but your kids will thank you that you pursued finding the answer & turned your life upside down to feed them so that they can be well.

I'm so happy for your family.

FooGirlsMom

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