tiredofdoctors

Robix -- unfortunately, your experience isn't unusual. I finally got things going because of my eye doctor! I think you need to get a new doctor -- this guy sounds like an a$$. Can you go to a GI doc without a referral? I wish you all the luck --I know it's a hard journey, and you see a LOT of doctors before you get help. This forum is a great help, though. Also, I HATE hearing, "I can't believe you're sick -- you look GREAT." It makes me want to throw up. What they don't know is that it took 3-4 hours for me to look that way. And, when I go home, I'm going to crash & burn. Sadly, you get used to it! (((hugs to you))) Lynne

Hi Kathleen --welcome. Please know that from my experience on this forum, you're definitely not alone. These people have been a wealth of information and consolance when I need it the most. I'm sorry you've had such a terrible time. It will get better, and just keep the faith. (((hugs))) Lynne

This is kind of weird. I have really long eyelashes, too . . . have had to have my lenses rounded out, as well. And I have really horrible fingernails. My mom has the same . . . she has also had horrible stomach trouble her entire life, but won't go to the doctor or do any follow-up to find out what it is.

I'd just write a note back telling them that I am fully aware of the definition of gluten, and of the manifestations of gluten sensitivity -- particularly since you wrote THEM about a specific condition. I would also tell them that, given that they have little regard for keeping abreast of the ingredients in their products, and for the lack of interest in the the health of their consumers, that you will no longer be using their products. In addition, you will be posting their response on the Celiac forum so that other gluten-intolerant patients will know of their apathy, and you will also encourage your friends to discontinue purchasing their products. At least you might get their attention.

I'd just write a note back telling them that, given that they have little regard for keeping abreast of the ingredients in their products, and for the lack of interest in the the health of their consumers, that you will no longer be using their products. In addition, you will be posting their response on the Celiac forum so that other gluten-intolerant patients will know of their apathy, and you will also encourage your friends to discontinue purchasing their products. At least you might get their attention.

I don't know about Mary Kay stuff. My husband's best friend has a wife who is a consultant -- she used to drive me NUTS about buying it. I e-mailed Mary Kay.com, and their response was that the consultants have a list available to them . . . Now she says that there isn't a list, per se, but anything that I want to buy from her, I can look up on their website, contact them, and find out if that ITEM is gluten-free. Yeah, right. When pigs fly. I'll stick with Neutrogena.

Karen, you rock! ((((((((hugs))))))) Lynne

I know about the disease because I'm a PT and I have been "questionably diagnosed" with it! I have a lot of fusion in my vertebral bodies, particularly anteriorly, which is really unusual for my age -- 43. I am negative for HLA B-27, thoughy. I know about the folic acid, because I was on Methotrexate for over a year! In fact, I'm going to the rheumy tomorrow and am going to start it again. I have developed Sjogrens, along with a long list of autoimmune stuff, including gluten intolerance (affects my brain vs. my gut), so the rheumy is taking the bull by the horns and putting me on the immunosuppressants. He thinks that, because I was being treated earlier by the methotrexate, it kept everything "at bay" and we weren't able to diagnose all the stuff that was going on. I stopped the methotrexate because this doctor's assistant thinks she went to med school and was such a B**** to me on the phone, after I had already complained to him, that I stopped going to him! Think that was a mistake! She made me SOOOOOOO mad, though. I had just gotten back from the opthmalogist who had diagnosed me with iritis, gave me meds from him, but said to call my rheumy. When I called, they sent me to her extension -- she tells me "you CAN'T have iritis -- in order to have that, you would have to have sarcoidosis, blah blah blah" I told her that she needed to call my opthmalogist that I just saw, because he diagnosed me with iritis, and she had better tell him that he's wrong.

Sorry for the rant, I got off on a tangent! At any rate, I'm sorry I don't know the full answer to your question, but I will ask my rheumy tomorrow. HE is great -- if you can tolerate his ASSistant

Jen -- Tell your dh I like the way he thinks!!!!!

According to the American Dietetic Association's book, Baby Ruth and Butterfinger are gluten-free, Snickers, Hershey's (regular and almond only), and I just tried kinnikinnick Double Chocolate Almond cookies and they are goooooood!

I'd just write a note back telling them that, given that they have little regard for keeping abreast of the ingredients in their products, and for the lack of interest in the the health of their consumers, that you will no longer be using their products. In addition, you will be posting their response on the Celiac forum so that other gluten-intolerant patients will know of their apathy, and you will also encourage your friends to discontinue purchasing their products. At least you might get their attention.

I had checked Chapstick, and they told me that it did contain gluten . . . I think they're giving out conflicting information . . .

Don't know about Blistex, but I do know that Carmex is gluten-free, so is Burt's Bees, Badger Balm . . . I think everybody's listed those, though. . . . .

Thank you for contacting them and for posting -- I read the "for over 40" and, being almost 44, thought -- aha! I need to buy that . . . . Now I guess it's not such a great idea -- at all! Thanks again. This was BIG help

Went to a Bob Evans -- when I was in the restroom, the waitress who was doing the cooking did not wash her hands after using the bathroom. Have never been to a Bob Evans again. Almost threw up at the one that I was at that day.

Ankylosing spondylitis is also known as "bamboo spine", because the spine eventually fuses and has the appearance of bamboo rather than separate vertebrae. It is in the category of "spondyloarthropathies". I agree that the folic acid with the Methotrexate DEFINITELY decreases the nausea, etc. Unfortunately, it can start at any age -- all it takes is the correct "trigger" -- maybe even a virus that you caught that set your immune system reeling. It seems as though everything has to be lined up at the totally wrong time, all together in the "cosmos", and BANG -- you develop another autoimmune disease. I'm sorry that you've started with this. I would recommend a really good manual physical therapist who knows how to do rib mobilizations, including "caudal" mobilizations (I would ask them specifically), so that you will be able to keep your rib cage moving well through the years (they can also teach you how to do this yourself). Also, this can affect your sacroiliac joint, so I would ask them if they had experience with that and if they use manual therapy to correct it. (Make sure you find a PT who puts their hands on you -- not one that just has some kid oversee you doing exercises that you could do in the gym by yourself)

A question with regard to the two magazines: Does either Whole Foods Market or Wild Oats carry those???

I went to Whole Foods and they looked at me like I had two heads when I asked . . .Wild Oats said that they were familiar with Gluten Free Living, but not Living Without . . . . does anybody know who carries what???

The only thing I can think of is that he is taking an immunosuppressant injection. My rheumatologist & neurologist are considering putting me back on Methotrexate and prednisone in order to try to get my reaction down -- even though I'm VERY strict with regard to gluten-free, I'm still having huge antibody production. It sure doesn't mean that I can eat gluten, though! They've already told me that -- emphatically!

Withdrawl from any SSRI should be done very slowly . . . I would either talk to your MD or talk to the pharmacist. From everything I've been told by my MD, it should take months . . . .

I am so happy for you. Isn't is great when you find a supportive, knowledgeable MD?

I'm confused, too . . . Also, if no one has any information with regard to a subject, they're not going to BS you and tell you something that could potentially harm you.

Jen -- glad to see you back -- your new avatar is beautiful! Neutrogena has several lipsticks that are gluten-free -- I posted a thread (3-4 weeks ago) on products which has their entire list. Aveda DEFINITELY has gluten in it. Almay also has a list of products which are gluten-free. Love Burts Bees and have used Badger Balm for years -- now I have to get their lip stuff! Carmex is gluten-free, too. I had the same thing happen to me. I was strict about what I ate, but I was also eating the Aveda lipstick right off my lips, not even thinking.

I'm with Richard. Gluten has been and will, if I choose not to be gluten-free, destroy my cerebellum and brain stem to the point that my body will not be able to coordinate the muscles for my heart to beat correctly, for me to breathe, or for my arms or legs to move. Literally, it will kill me. I feel no need to explain to anyone why I choose a gluten-free lifestyle. If they want t to LEARN more about gluten intolerance, I'm happy to refer them to books, websites, etc., but I don't explain myself anymore . . . .

ooooooh .. . . that sounds goooood!

OMG - I just got my first tastes of Kozy Shack puddings! I've had the Tapioca and the Chocolate -- they're GREAT!!! WooHoo!!!

I agree -- gluten-free eating is really not that hard. It's AVOIDING the gluten that inevitably comes from other households, restaurants, etc., that is the hard part. Also, it kind of stinks that you have to always cook your food at home.