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lynnelise last won the day on December 5 2011

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  1. It's hard to tell if gluten was a factor, some people find that their stomach will be off in response to traveling alone. You are eating different foods than normal, possibly at different times than normal. Lots of factors can come into play. I would just go back to basics for a few weeks until everything feels normal again.

  2. I had a friend who is on the paleo diet send me a link to this article. She seemed kind of offended that I didn't trust it. Honestly the terms "functional neurologist and functional endocrinologist" immediately raised a red flag.

    I used to think I had some sort of reaction to coffee, not at all similar to my gluten reaction though. I would get tingly lips, tongue, and gums! I was drinking coffee with almond milk daily at this time. I ditched the almond milk and have had no issues. I drink coffee with milk or soy frequently!

  3. I wish I had advice for you. I have had chronic fatigue for 3 years. After extensive testing for EVERYTHING I've been diagnosed with chronic mono and found to have a chiari malformation.

    Basically I have to work in order to have insurance so really going to work is all I get done and it easily overwhelms me. I do the minimum required at home in regards to cooking, dishes, cleaning the bathroom, and laundry. If I get a burst of energy and try vacuuming, mopping, ect. I pay for the next week or so.

    I do hope you get some answers soon! Wish I was of more help!

  4. I love Red Robin. I have been to several locations in various states and have always had good service. The manager always comes out when I ask for the gluten free menu and goes over everything with me. Also the manager has always personally brought my meal and stayed at the table for a moment to have me confirm that everything looks as I ordered it.

    You can have a bad experience at any restaurant gluten free or not. I think everyone has experienced slow service from time to time and it's usually an isolated incident. I always give restaurants a second chance.

    I've got to agree with the previous poster about the Applebee's "gluten free menu". I've given it 4 tries and have gotten hit 4 times. Last time I had a bunless burger on foil and a plain salad and STILL got glutened. They are definitely on my banned list.

  5. Thanks for this thread....I'll be having an MRI in the coming months as MS has never been ruled out for me. Although your results are indeed very scary I imagine there is relief of getting some answers.

    Hoping your health improves each day and thanks again for sharing :)

    Good luck with your MRI and I hope you get some answers soon! While there is a bit of fear there is a lot of relief in being able to put a name on what is going on! I guess kind of like the struggle a lot of us go through in being diagnosed with celiac!

  6. My mother, 2 cousins, and one of her daughters all have Arnold-Chiari Malformation. This is actually considered a rare malformation. My mother's is mild, manageable but occasionally gives her headaches. The child had surgery as a youngster and is free of symptoms.

    I feared that I also had this because of my symptoms, but it was ruled out.

    Rarely is surgery done, from what I understand, but if it will relieve those symptoms, then it will be worth having it done, so you can get out of this discomfort!

    I am so glad you pursued this and got an ANSWER! Yes, I am with you---it seems ridiculous that we have to keep pressing until someone takes us seriously. Good thing you were relentless. :)

    I hope you will get the relief you so deserve.

    Keep us posted, please! Best wishes, hon.

    It's nice to know other people have managed it without surgery. Stories I'm reading about the surgery seem very mixed. Some people had great success but many others had no relief! I'm a bit worried because it seems the neuro symptoms like I have are most likely to need surgery. I probably need to push to see a specialist. I'm in a rural area and the neurologist has little experience with this. I'll see how I feel after my 2nd MRI and that follow-up!

  7. When the Dr.s find something that could be causing your symptoms, it's a little bit of relief knowing you're not just imagining things, which is followed by the shock of being DXed with such a thing! :o

    Did your symptoms come on suddenly, or have you had them for some time? I'm curious because I've been having neuro symptoms too.

    If you have to have the surgery it will be uncomfortable, but you will heal. I had a spinal surgery on the disks in my neck. Ruptured disks were causing pressure on my spinal cord. They removed two disks and put in a piece of bone to replace them, followed by a plate screwed into the bones to hold eveything in place. I had to wear a neckbrace at first, which was the hardest part of it all. Six weeks later I was doing great, with the nerve issues healing a bit slower.

    I would think your surgery, if you have it, might be similar?

    My symptoms came on gradually and at first were attributed to my B12 deficiency. Well I brought that up to normal levels and still had worsening issues. Then I got mono and shingles so that was blamed. Well three years later my hands and feet started going completely numb pretty much constantly and I started having burning sensations all over. I also kept getting daily "sinus" headaches, vertigo, and feeling like I was about to pass out. My regular doctor refered me to the neurologist because he thought the extreme fatigue coupled with neuro issues could indicate MS and the neurologist agreed and wanted an MRI. So honestly while I'm a little freaked out I am also enormously relieved. Once you go so long getting dismissed by doctors it almost feels like a victory to get a diagnoses and finally be acknowledged as telling the truth!

    I've been keeping up with your thread and praying about your issues and your trip to Mayo! I hope you get answers soon! It's so scary to know something is wrong but not know what!

  8. I understand the frustration this disease causes. You really need to try to find safe foods because keeping nourished is important. Larabars are always in my purse when I travel so I have a quick meal on the go. Fruits are handy and portable. Raw nuts. Minute microwave brown rice is gluten free and comes in single size cups, pair with tuna and a veggies and you can make a quick meal with minimal cooking. The crock-pot is a great resource. Just dump things in and at the end of the day you have a gluten free meal with very little effort!

    Happy Birthday! I hope your day gets better!!!