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Finally--a Good Story!

chocolatelover

By chocolatelover
in Doctors

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chocolatelover Contributor
chocolatelover
Posted

For all of the negative experiences we've all had with our doctors, I finally have a good one to share. This week I went to see Dr. Scott Lewey, who is a contributor to celiac.com and has his own website: Open Original Shared Link. I went to him even though he is 45 minutes away and even though they don't yet take my insurance--because I had had such a nightmare experience with my former GI, and because when I emailed him, he actually emailed me back.

Anyway, he spent almost an hour and a half with me! It was incredible. We talked research, genetics, about me and my diagnoses (I have lymphocytic colitis, and he dx'd me with celiac even though I had negative bloodwork and negative biopsy), my children. I think he really appreciated the fact that I came in with so much information and had done my research and that I really get what it's all about. He shared personal experiences with me--including knowing Ken Fine with Enterolab and the reasons he hasn't published yet. We talked about his (Dr. Lewey's) research and that he has people from all over the country coming to see him because they are not getting what they need from the mainstream medical community. He was fantastic.

My second experience was with my family doctor, who I also went to see this week. He congratulated me on my celiac diagnosis for finally knowing what is wrong with me (he was the one who actually suggested it in the first place), for being so proactive in getting my diagnosis, and he apologized on behalf of the GI that he sent me to. He plans to follow up with them because he really feels like they need to know how badly they screwed up with me. He was so supportive I just couldn't believe it.

So, I just had to share a good experience--there are good doctors out there, you just have to look hard to find them!

CL

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confused Community Regular
confused
Posted
For all of the negative experiences we've all had with our doctors, I finally have a good one to share. This week I went to see Dr. Scott Lewey, who is a contributor to celiac.com and has his own website: Open Original Shared Link. I went to him even though he is 45 minutes away and even though they don't yet take my insurance--because I had had such a nightmare experience with my former GI, and because when I emailed him, he actually emailed me back.

Anyway, he spent almost an hour and a half with me! It was incredible. We talked research, genetics, about me and my diagnoses (I have lymphocytic colitis, and he dx'd me with celiac even though I had negative bloodwork and negative biopsy), my children. I think he really appreciated the fact that I came in with so much information and had done my research and that I really get what it's all about. He shared personal experiences with me--including knowing Ken Fine with Enterolab and the reasons he hasn't published yet. We talked about his (Dr. Lewey's) research and that he has people from all over the country coming to see him because they are not getting what they need from the mainstream medical community. He was fantastic.

My second experience was with my family doctor, who I also went to see this week. He congratulated me on my celiac diagnosis for finally knowing what is wrong with me (he was the one who actually suggested it in the first place), for being so proactive in getting my diagnosis, and he apologized on behalf of the GI that he sent me to. He plans to follow up with them because he really feels like they need to know how badly they screwed up with me. He was so supportive I just couldn't believe it.

So, I just had to share a good experience--there are good doctors out there, you just have to look hard to find them!

CL

Is he hard to get in to. I was just looking at the website and it said u can do an online consultation. I also see he takes our insurance. Im wondering if he would see my son, or if he just does adults. Since i already know im celiac threw blood work and testing positive with enterolab, but i would like to talk to him about me not having the celiac genes. Im so excited there is a good dr in colorado. I will deive the 5 hours to see this guy lol

paula

missy'smom Collaborator
missy'smom
Posted

Thank you for sharing this. It's good to hear. I'm happy for you.

chocolatelover Contributor
chocolatelover
Posted
  • Author

Paula: It took me about 3 weeks to get in to see him. I'm sure he sees kids as well, though I think the day I was there I was the only one under the age of about 65 in the office. :lol:

The reason that I think he sees kids as well is that his wife is celiac and he is gluten intolerant, and he has 2 young children, both of whom are off gluten as well because of their genetic dispostion. We also spent a fair amount of time talking about my kids and what to do with them, so I think he's interested in the whole population, not just adults.

I was very happy with my time with him. Well worth the drive (though it was only 45 minutes for me!). One of the things that really made me want to go see him was that he actually responded to my email--more than once! I think he truly cares about his patients and wants what is best for them. We talked about my going back on gluten for another biopsy, and he said it just isn't worth it because who knows how much time or how much gluten it would really take to get a positive biopsy, which I really respect.

Good luck!

  • 2 weeks later...
Nancym Enthusiast
Nancym
Posted

You're so lucky! I have loved reading his blog... but I'm disgusted he isn't blogging more! Tell him to get busy, please! :)

chocolatelover Contributor
chocolatelover
Posted
  • Author

Will do!

Actually, I was a little disappointed--I sent him an email after I had been there and got an automated response back. He's gotten sooo busy that he had to hire someone to help him answer them. :(

Guess it just goes to show that we're in good company--just way too much of it!

confused Community Regular
confused
Posted

I am going to contact him this week. I am hoping he will diagnose ss with celiac from having high IgG levels and having the ceiliac gene and all the stomach problems that he has. I really hope he will see him, if not then we will just keep him gluten free and not worry about the official diagnosis. Cause i refuse to ever put him back on gluten.

paula

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chocolatelover Contributor
chocolatelover
Posted
  • Author

I hope he can help you as well. I think he's very open minded when it comes to the diagnoses. It certainly seems like you have a case for an official diagnosis.

Good Luck!

  • 2 weeks later...
krebbecca Newbie
krebbecca
Posted

Just wanted you to know that I had a positive experience as well. There are good GI's out there! My family physician sent me to Dr. Brasco in Alabama after vitamins and iron pills didn't help my anemia. Dr. Brasco looked at my previous blood work, and previous irritable bowel problems, asked about my family heritage and history and was the one to suggest celiac sprue. He is a proponent of a low wheat diet for everyone and has been on one himself even though he doesn't have celiac sprue. He's with the Center for Colon and Digestive Disease in Huntsville, Al. They've been great!

Anyway, I had blood tests done that day (came back positive) and had my biopsy and colonoscopy 2 weeks later. Don't have the results yet, but he has diagnosed me just from the symptoms and blood work. I spent the 2 weeks before the procedure eating all my favorite gluten foods and I felt miserable, but hopefully for the last time. I start my gluten-free diet tomorrow (after I purge my pantry and go to the grocery store). I'm still getting my system back on track from the procedures so we'll see how the next couple days go!

After reading about the trouble everyone else was having, I was beginning to feel like it was all too easy for me! Glad to know that there are other good doctors out there.

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