My Story (in a nutshell)

I was diagnosed with Celiac Disease in July, 2007.

My symptoms were not typical. Oh sure, I had the usual stuff like chronic diarrhea and bloating (which were misdiagnosed as Irritable Bowel Syndrome), and mood swings.(they treated me for Bi-polar disorder) I also had the really annoying itchy, burny rash thing on the back of my head and occasionally on my elbows and knees. (I was treated for Eczema and Psoriasis).  Brain fog, fibromyalgia and arthritis also plagued me.

The big one, the one that signaled a real problem was the sudden periods of disorientation, when I didn’t recognize my surroundings or people I actually knew!! (can you imagine how scary that was?? – I thought I was losing my mind or had a brain tumor or something)

I spent a year, not being able to even sit on my front porch without someone with me.  I had signs on the exit doors telling me that this was my home and to call my boyfriend’s cell phone. (He would talk to me and clam me down)  It was lonely, in the house by myself, day after day, so we got a kitten.   (The kitten’s name was Sylvester because he looked like th cartoon cat, but became Buster because my little grandson could not say Sylvester – he called him Ballbuster LOL)

I was also having spells where I was extremely dizzy. (diagnosed as Labrynthitis)

Although I had been plagued by these symptoms for as long as I can remember, no one ever connected them. (I always thought it was normal to have pain in the upper abdomen after eating)

Finally, my mother saw a program on television about a boy who had moments where he just blanked out the rest of the world and his mother refused to believe he had Autism. His doctors finally put him on a Gluten Free diet and his symptoms disappeared.

The show I’m talking about is an episode of Mystery Diagnosis (2005) and the boy’s name is Eamon Murphy. Really interesting show!

I spoke to my doctors about it and a Colonoscopy/Endoscopy was scheduled. The results showed that I have Celiac Disease. At the same time, I was diagnosed with Type 2 diabetes.

At first, I was in a panic. I didn’t have much information on the disease, and I began to wonder if there was anything out there for me to eat (that didn’t taste like cardboard)

After massive amounts of research, and trial and error with recipes, and searching the web, I have learned that living Gluten free is not so bad.  In fact, I have become so good at cooking gluten free, my BF prefers it and most people don’t know the difference!

What is more, I have met so many wonderful people because I have Celiac disease that I might never have even heard of otherwise.

Because of what happened with me, I wanted to help others who have been newly diagnosed – and this blog was born.

I count myself very fortunate. Life is good.

Would you like to share your story?

Love,

Aunt Jayne

NOTE:  As I have researched food and health, it has become apparent to me that I needed to stop eating refined sugar, bovine dairy products (I seem to do OK with goat products) and GMO foods.   I have been taking local raw honey with ground cinnamon every day which has helped a great deal with my environmental allergies.  I am changing this blog to reflect my dietary changes.

AJ

30 thoughts on “My Story (in a nutshell)

  1. Stpped at my fav farm store on way home from DR. visit. Got all the things I didn’t have for the peroghi’s. Can’t wait to try them. I used to make them from scrath when the kids were little so this won’t be a big deal. Bet you could use the same dough in haluski (fried cabbage & noodles) By the way, I am Irish, not Polish but do love some of their favs. Thanks for answering my message… Peggy

  2. Thank you for sharing your story!
    I am so happy to hear that you are a success story 🙂
    Enjoy the perogies. My BF says he prefers them over the ones made with wheat. If you want to do them dairy free, Daiya “cheese” works great in these.
    Love Aunt Jayne

  3. Thanks for sharing your story. I am a 2 1/2 year breast cancer survivor & was recently diagnoised with celiacs disease about 6 weeks ago. I was very light headed & neuseaous all the time. In addition I was loosing weight. On my 6 mo. visit to my oncologist, she said the weight loss was too fast & scheduled a colonoscopy/endoscopy. And as they say, the rest is history. I am lucky for the fact that we have an orchard/farm/garden center that has an entire little store that contains only gluten free & dairy free foods. It is great. Blue pricetags – gluten free, pink – dairy free. It makes shopping so much easier. I go once a month & stock up. I am very excited to find your peroghi recipe. Can’t wait to try it. Thank you. Peggy

  4. Don’t concentrate on what you can’t but rather on what you can! Once you embrace your new way of life, it will begin to get easier and become your normal. Let me know if I can help.

  5. Hi, I was diagnosed with Duhring’s Disease this past Wednesday, after a outbreak initially diagnosed as chicken pox 3 weeks ago and shingles the week following. The turning point was after enduring this for 5 weeks, I started research myself and then made an appointment with a trusted MD. I am completely overwhelmed and emotional, NOT how I usually am so this is shaky ground for me !! I am waiting for further referrals to be made (with dermatologist and GI) and tests to be conducted within a week (IgG, IgA, IgE, etc.). I have done a ton of reading and still feel as confused as ever ! How can I move past this and begin formulating a working plan ?????

  6. Hi there,
    Thank you for your story. I am not diagnosed, but discovered my gluten allergy after a body detox then reintroducing foods back into my diet. It was a “step on a rake” awakening for me. I’m so glad I found your blog. If you think you had a difficult time finding food you can eat, I am a vegan (I only eat fish right now, but that will go away with rising prices of seafood), no dairy, no gluten, and so my adventures in finding what else I can eat was really scarey at first. It’s getting better, though, with access to the Internet and such, I think I’m on my way to a better lifestyle 😀 Thanks for doing this blog. Vicki

  7. I had the really bad symptom of Celiac….uncontrollable diarrhea. Had no life. Couldn’t go to a function, out to eat, a date…would even happen out of nowhere, like in my car. I was diagnosed with IBD while this went on for 12 years. Finally diagnosed with Celiac Disease 6 yrs ago+wants I went gluten free…no problems. Turns out my mom+brother have it too. And my brothers youngest child was diagnose at age 6!!

  8. Dear Aunt Jayne,
    I was diagnosed with celiac disease May 1 2010. I am very happy to have found out what was wrong with me. Living gluten-free can sometimes be difficult, but I’m adjusting well and am so much happier. I just want to say thank you, for making it easier for newbies.
    Yours Truly,
    Anna Hallquist

  9. Hi! This is an exerpt from my blog, but my story is so similar to yours, especially in the sense of how I felt when I was diagnosed to being intolerant to: gluten, wheat, rye, spelt, casein, cow dairy (yogurt, cheese, milk), red meat, garlic, cranberries, almonds, cashews and so many more.

    http://www.whatisleft.ca/?page_id=2

  10. Aunt Jayne:

    My name is Sean Moloney, with HealthTheater Networks. I just discovered your Gluten Free With Aunt Jayne blog, loved your content, and thought we might have something to contribute.

    We are a top health video production company with several videos about celiac disease and other food allergies–all featuring real people telling the story of their personal battle with the condition. Please see my favorite one here: http://www.healththeater.com/video/Celiac_Disease__Ashleys_Story_id530.html?playlist_id=96

    We are interested in syndicating these videos to your website, for free, in exchange for the targeted visibility that exposure on your website would provide.

    If interested, could we please schedule a short call to explain further?

    In the meantime, feel free to us on Twitter: @HealthTheater and like us on Facebook: http://www.facebook.com/pages/HealthTheater/207647009259593

    Thank you,

    Sean

    Sean Moloney | CEO
    Dramatic Health
    45 Rockefeller Center, suite 2000 | New York, NY 10111
    http://DramaticHealth.com | http://HealthTheater.com

  11. Thank you! I hope this blog makes it easier for the newly diagnosed to settle in to the gluten free way of life 🙂

  12. I was first diagnosed with Celiac’s in April 2001. Back then, it was next to impossible to find gluten-free food, blogs or anything else. I am loving that 10 years later, people actually know what I’m talking about. Great blog!

  13. Thank you for visiting Pauline and for sharing your story! Let me know if I can help you with anything 🙂
    Take care of you,
    Aunt Jayne

  14. Hi Jayne
    Great to read your story, I’m from the Uk, I was diagnosed with Chronic Kidney Disease 6 months or so ago, but was having lots of other problems with my stomach, not the classic diarrhoea but constant constipation and bloating as well as dizziness which I was told was probably IBS, but after a while they done a blood test and it came back positive for coeliac disease so off for a biopsy I went and just before Christmas I had confirmation that I had coeliac disease,also have a hiatus hernia I never knew I had not sure if the Kidney Disease was triggered by the coeliac or other way round as know one seems to know… yes a shock to the system so now a new year and a new start for cooking its like being a young child all over again learning a new skill. so very early days for me and a long way to go yet and a big challenge to make a lovely loaf of bread which has always been my comfort food.
    Thank you for a lovely site I can refer to

    Pauline

  15. Thank you so much for thinking of me! I would love to do a give away 🙂
    I will e-mail you directly

  16. Hello Jayne!
    My name is Eric and I work for Dr Vikki Petersen. She has her own functional medicine medical clinic, co-author of the book The Gluten Effect and write to many blogs especially her own, glutendoctors.blogspot.com.
    I wanted to reach out to you to see if you would be interested in doing a free give a way for you readers. I would love to send you a copy of the book “The Gluten Effect” and our new DVD “Gluten Sensitivity and Celiac Forum 2010”, for your preview. Let me know if you would like me to send them. Email me at eric@healthnowmedical.com.
    Look forward to hearing from you.

    Best,
    Eric

  17. Thank you for visiting! I really do understand and we are not alone. (Sounds like Sci-fi LOL)
    I have shared my story because I wanted others to know that they could have weird symptoms and if they see these symptoms in others they might encourage them to get tested.
    This is such a difficult disease to diagnose by symptoms alone, though because everyone has their own set of symptoms.
    Take care of you,
    Aunt Jayne

  18. hi,
    wow its pretty weird reading your symptoms. i had vertigo last year and it was the scariest thing i have ever had. i didnt know what was going on. i felt so out of control. the ibs and being treated for bipolor and well as depression. i have been on 35 different medswith no success. i have itching that they cant explain. im glad that you understand.

  19. Thank you for visiting! I would be honoured if you would add my blog 🙂
    I will add your link to this one as well.
    Take care of you

  20. Thank you for visiting and commenting Zerrin – such kind words (I am blushing)
    I have another blog that deals with Diabetes as well as Celiac and food allergies http://www.allerjay1.com
    Hope to see you there 🙂
    Take care of you,
    Aunt Jayne

  21. Hi Jayne,
    It’s nice to read your story. I had similar feelings when hubby was suddenly diagnosed with Type 1 diabetes when he fell into sugar coma one night a few months ago. I’m still trying to get used to this new ‘thing’ in our life. But we realize that it’s not that bad, on the contrary, it helps you be healthier.
    Your blog is so motivating by showing that it’s still possible to enjoy what you eat. I know some friends with celiac disease, so I will share your recipes with them. Thank you!

  22. Thanks for visiting and taking the time to comment 😀
    I have shared my story in hopes that it might help others to know that there is hope for us ~ I am living proof
    Take care of you,
    Jayne

  23. Hi

    It was nice reading your story as yours was very much like mine though with a few more issues as well. Glad you’re sharing your story 🙂

    Bunmi

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