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Hi! Support And Friends Needed.
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Hi.  My name is Catie and I have been sick a long, long time.  I will try to condense my story and make it as clear as possible.

 

My tummy has always hurt.  At 25, it got dangerous.  The abdominal pain was really scary.  The med that helped was Bentyl, but it was not a cure or even that effective.  Sometimes, I would take a prescription pain killer leftover from my DH's kidney stones.  Mutliple MD's, a positive celiac panel,  following a strict gluten free diet DID NOT improve  the pain AT ALL, and then I landed in the hospital.

 

The gastro told me that I did not have celiacs and I went back on gluten.  The major trigger I could identify for the previous pain was Splenda.  Came off Splenda, and the pain *mostly* went away, but I have diarrhea  EVERY DAY.  This went on for 2 years.

 

Fast forward to the end of January.  I had a checkup at my regular MD's office and I asked him if my tummy pain would ever go away.  He reminded me I had tested positive for celiacs and suggested I go back to gluten free.  

 

In the past week and a half, the diarrhea has been remarkably better, but not gone.  Bowel distention is improved, my girlfriend says it looks like I lost at least 2 inches around the middle.  I am doing more than just gluten free because I really, really want to feel better.  

 

So, I made eggs last night in a cast iron skillet.  Awful.  DH has cooked many a pancake in it.  The pain was so bad that 2 Bentyl took the edge off but I still was super restless, could barely sleep and awoke to MORE tummy pain.  Egad.

 

I understand that this is a process and takes time  I am ok with that.  I feel like I need an older sister.  Does that make sense?  Just a friend to kind of mentor me thru this process.  I am grateful to have found this forum but am nervous about posting as I don't really know the etiquette of forums boards.  Is it OK that I am a newbie and I start a thread, that kind of thing?

 

 

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Welcome,

 

You find out, on the forum, that other people have experienced the very things you do.  We all bumble around a bit at first and learn the hard way!  I wish you well on your recovery.

 

D

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You're in the right place!  This place has provided peace of mind many a time.  Post any time!

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Hi Catie and Welcome!

 

You're definitely in the right place!  Collectively, we can be your big sister and get you through this!  The first few months are the hardest but once you realize how much better you feel you'll know it has all been worth it.  Poke around on the forums - there is tons of good information in here - and post whatever questions you have. 

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Thanks y'all.  I really appreciate it!  xo

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Welcome to the board! You will always find friends and support on this forum. Many of have been on this site for years because we find this kind of community support is incredibly important and also because it so important to help out others - we were all in your shoes at one point.

 

Remember: it may be hard now, but once you get the hang of it you will feel amazing!!

 

Welcome! Search around on the board and feel free to ask questions!

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    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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