Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Looking For Doctor In Baltimore, Md Area
0

6 posts in this topic

I have been gluten free for almost a year now, but have had no positive diagnosis. I had one doctor (gastroenterologist) who didnt really listen and prescribed a drug called raglan- which "empties the stomach out faster" in his words.

I started to read up myself and decided to stop eating wheat, at which point my symptoms decreased and I started feeling better. The doctor accepted this and even though the blood test was negative prescribed me to believe I have wheat sensitivity and stick with it. Needless to say I dont want to return to him.

I have further deduced that it is gluten I am sensitive to as I have almost immediate reactions of bleching and cramps. Well, after joining this forum and reading and looking into the enterolab tests I find myself wanting a definitive diagnosis. I am wondering if there is a doctor not only willing to accept the results but possible insurance coverage for the tests?

I also am just interested in finding a good GP who not only understands the gluten thing but is sympathetic to some nutritional and non western approaches to healing. Any suggestions as to where to find one?

0

Share this post


Link to post
Share on other sites


Ads by Google:

If you're in Baltimore, the first place I'd try would be Johns Hopkins. Another possibility is the University of Md. Celiac Center for Disease Research.

0

Share this post


Link to post
Share on other sites

I am in College Park, MD. I asked the same question trying to find a specialist familiar with Celiac Disease. YOu'd think with Johns Hopkins and UMD theyd be easy to find, but nope. I've had horrible luck with docs here.

However, the local Celiac Support Chapter highly reccommends this guy:

Dr. Michael Epstein of the Digestive Disorder Assoc, Annapolis, Md. telephone number 410 224-4887 .... he can also be seen in Glen Burnie Maryland on Mondays or Wednesdays I think.

I am seeing him on the 19th, his next opening is in late August, but they said the other docs there are very familiar. Good luck.

Sara

0

Share this post


Link to post
Share on other sites

I'm in Rockville, and I had no trouble finding Celiac specialists at JH or U. of Md., but I did have to wait 10 weeks to see them! That was no fun, I'll admit. I'm seeing Dr. Alessio Fasano in July at the U.ofMd. Celiac Center, I'll post how that goes if anyone else needs the info.

0

Share this post


Link to post
Share on other sites

Thank you so much for the help! I really appreciate your responses.

I'm going to call both doctors suggested and

try to hook up with the local celiac support group.

thanks, julie

0

Share this post


Link to post
Share on other sites




Hi - I seem to have had the same problem about getting diagnosed....my

(ex)dr who is a gastroenterologist, basically said - "you're not losing weight so I wouldn't worry about it too much! Come back and see me in three years for a follow-up colonoscopy" Yeah! Riiiiiight!

Anyhow, I found a dr in Annapolis - Dr Suzanne Sankey of the Annapolis Gastroenterologist Assoc. 410)224-2116 (703 Giddings Ave. Suite M). She also has an office in Severna Park - if you're familiar with that area. The office phone number there is 410)647-5980.

The only problem is that Dr Sankey seems to be extremely busy; when I called for an appt last week, the earliest I can get in is 09/02! There are other drs in her office that I might have been able to get an earlier appt with but her name was listed at another website that I was reading about Celiac so I'm willing to wait. After all, I've already had the problem for a long time so 2 months more is not going to kill me (hopefully) :D

I too have started avoiding gluten and have started feeling much much better.

Hope this information helps you some!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined