Discussion in 'The Watercooler' started by flutterbee, Feb 13, 2008.

  1. flutterbee

    flutterbee Guest

    Do you have some websites or other info that could help me get started on a gluten-free diet?

    Thanks in advance!
  2. Josie

    Josie Active Member

    Go to www.glutenfreeforum.com.

    What made you decide to do this?

    I hope it works for you. It has totally changed my life (in a good way, despite the inconvenience).
  3. flutterbee

    flutterbee Guest

    Apparently, I'm extremely Vitamin D deficient. The number should be above 30 and I was at 4. One of the possible reasons for this, which they did more blood work for today, is Celiac Disease. I figured it couldn't hurt to go ahead and get started, in addition to the 50,000 units of Vitamin D twice a week that they started me on.

    Thanks for the link! Any advice along the way would be wonderful. I feel like a stranger in a strange land. You have NO idea how much I like bread.
  4. Josie

    Josie Active Member

    Yes, I used to love bread, too. I would eat the entire bread basket plus at restaurants. Now, I don't even miss it. You might be surprised at the difference it makes.

    I'll be glad to answer any questions you have. If you post a question at the other site, you'll probably get 5 different answers in 30 minutes, though, so that is the quickest way.

    I didn't think I had any symptoms of celiac disease but when I went gluten free, lots of things improved that I thought were just normal.

    Don't let a negative blood test discourage you from trying the gluten free diet. My daughter's test was negative but she had stomach problems until she went on the diet. I didn't even test my other daughter and myself with the blood tests but we are doing it anyway. We did do an alternative test that most doctors don't accept, that was positive.

    You can search on some of your symptoms and see if other people had that before they started the diet or post your symptoms and see what people think. That might encourage you.
  5. Sue C

    Sue C Active Member

    Heather -- Melissa's friend and her friend's sister have Celiac Disease. Let me know if there is anything specific you want me to ask her.

  6. Josie

    Josie Active Member

    My advice to start is to eat naturally gluten free foods and not try to replace "regular" food with substitutes. So fresh or frozen fruits and veggies, rice (not rice mixes), plain meats that you season, eggs, cheese, and milk. Stay away from processed foods at first but there are plenty you can use when you know what to look for.
  7. flutterbee

    flutterbee Guest

    It doesn't fit all my symptoms and it seems that the doctor, like so many others I've had, is latching on to this and putting all his eggs in the basket. I can relate to some things, but not anywhere near all of it. And I have many more symptoms that it doesn't seem to address.

    I left the office in tears. It's good to know there is a deficiency, but had I not pushed as to why there was such a deficiency, he would have been happy just writing a script for Vitamin D and sending me on my way. Other than checking for Celiac Disease, he's not doing anything else. I think I'm going to have to push for maybe an endocrinologist? I don't know. I'm just frustrated beyond words.

    It's another one of those things where I feel like we've just found another symptom; not the answer, yet they are too quick to say this is it. Like before my heart attack and the tests showed prior mono so they said well it's chronic fatigue and then washed their hands of it.

    It doesn't help that everyone was putting all of their hope into the rheumy. I keep thinking how the neurologist said that if it's not rheumatic then they are going to be scratching their heads and I want to scream. The rheumy did offer to do an MRI of my spine, but he was going to do it without contrast. If they're going to do an MRI anyway, I want contrast to check for MS. Let's just check it all at once, Know what I mean??
  8. Josie

    Josie Active Member

    I agree it doesn't fit all of your symptoms. You might still feel better trying it.

    There is at least one person on that board who started as gluten intolerant and it turned out she had Lyme Disease. Now that she's been treated for Lyme Disease, she can eat whatever she wants.

    From what you've said, I think you have enough Lyme symptoms that you could see an LLMD. They try to rule out other things before diagnosis'ing Lyme. And Lyme, like Celiac Disease, is often misdiagnosed and the patient comes up with the answer and goes out of the mainstream to get help. If it is Lyme, I would be surprised, from all I've read, if any doctor you see, other than an LLMD, will diagnosis it.

    It is too early for me to say definitely that the LLMD's have the answer for my daughter so I don't mean to act like I'm sure they are right.

    It was my daughter's LLMD who insisted on an MRI with contrast for my daughter's headaches. So even if you don't have Lyme, an LLMD might help you figure it all out.
  9. flutterbee

    flutterbee Guest

    I lost the lyme info you had given me with the board change over. Could you send those to me again? Especially the info on how to find an LLMD.