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dfish

Testing Suggestions

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Just wanted to throw out some suggestions for folks struggling with getting a diagnosis or information. After a two year battle of trying to figure out what the heck is going on with me, I think I'm finally getting the help I need and would like to share it with others. I contacted Great Smokies Laboratories (you can google them and get their website, I can't ever remember it offhand) after reading their website. They have a food antibody assay that includes both IgE and IgG mediated allergies, plus a full celiac panel, among several other tests. The catch is that they require a physician to order the tests. But, I emailed them and got a list of doctors in my state that will refer to them. I made an appointment with a doctor close by, a naturopath, and went in a few days ago. I told him my long story about all of this stuff and let me tell you, what a huge difference between him and other doctors! He spent two hours going over everything with me, ordered comprehensive celiac panels and food antibody tests, among a whole host of other tests, explained all of the tests to me, including their advantages and disadvantages, talked with me about all of my various options, talked with me about leaky gut syndrome and other things that he believes may be going on, talked to me about the stress and frustration of all of this and how that can affect my body (he was very sympathetic and kind about that stuff) and then asked me to call him every few days to just let him know how I was feeling and doing until my test results come back!! He was absolutely wonderful and I believe now that I am going to get some definitive answers. My thought is that most doctors that do refer to Great Smokies, which is kind of a "non mainstream" lab, will more than likely be similar in that they are willing to think outside the box and work differently than regular doctors to get a diagnosis. So, just in case anyone is wanting to try a different way to get some answers, I would suggest/recommend getting in touch with Great Smokies to get a referral list and getting in touch with one of their referring physicians near you. Although I can't guarantee it will be better for you, thus far this is the best experience I have had with a doctor regarding this celiac/food allergy question.

Rachel

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Thanks for sharing that, Rachel. I'm glad that you had such a good experience with that Dr. I wish I would have known about it--I might have gone that route, too. The end result would have been the same, but I would love to have a one on one relationship with my Dr. like that.

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Where do you locate a naturopath? I checked my phone book, and couldn't find anyone listed as such.

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I had a very similar experience when I went this route after too many frusterating appointments with my regular doctors which got me nowhere. The doctor I saw was an alternative doc but she was also an M.D. I sat with her for over an hour and she was REALLY nice and understanding. This was about 8 months before I found out about gluten so at the time my visit was related to thyroid. My condition continued to worsen over the next couple months until I felt that I was dying and I couldnt eat because everything was making me sick and my food wasnt being digested. NOBODY at my HMO cared one bit what was going on with me. I was calling them crying but noone did anything to help. I was desperate and called this doctor and left a message. She called back immediately and was VERY concerned...she could tell from my voice I was crying out for help. She spent about 45 minutes on the phone with me....I told her what was going on and that food seemed to be making me sick. I had ended up in the ER after eating out one night. She put me on a food elimination diet. We worked out the whole diet...made a list and all...right there on the phone. She also told me to make an appt. with my reg. doc...have my mom take me...and DONT leave the office until they DO something. She told me how to "work" the system...what to say and who to talk to. This was the beginning of how I started to figure out the underlying cause of my problems. I had several phone conversations with her (I was never charged) and she ALWAYS called back within an hour. I saw her a couple more times and she ordered the ELISA food test from Great Smokies along with some other digestive tests (CDSA) I had done there. The ELISA test didnt really help me since no significant sensitivities showed up at all. Even though she never diagnosed me (I figured it out myself) she was truelly a lifesaver.

I know exactly what you mean about it being a completely different experience. She was actually HUMAN...whereas my other doctors seemed more robotic. They were just going through the motions...writing out the prescriptions and not really listening to anything in the 10 minutes they give you. I will always be grateful to that woman....she was there on the WORST day of my life...and she LISTENED. The last couple visits I had with her...I really didnt need to be seen. I felt I should make the appointments and pay her since she had never charged me for any of the phone conversations. Its good to know there are some doctors out there who really DO care. :)

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Where do you locate a naturopath? I checked my phone book, and couldn't find anyone listed as such.

To find a naturopath, go to www.naturopathic.org and choose "Physician Search." This will allow you to search for licensed naturopaths, or those eligible for licensing, in your area. This should screen out the diploma mill folks who may call themselves naturopaths, but who did not go to accredited schools and are not eligible for licensing.

Marsha

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