Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Looking For A Doctor Who Knows How To Deal With And Treat Celiac


Meggielynn13

Recommended Posts

Meggielynn13 Rookie

I'm going to get tested by my PCP in January but I would like to go to a specialist who specializes in Celiac and Gluten Sensitivity. I'm looking for a doctor in the upstate New York area between Albany and Saratoga if possible. I've been to GI's who supposedly specialized in Celiac and I ended up knowing more about Celiac then they did. What a waste of hundreds of dollars. If you know of any doctors I would really appreciate contact information.

Thank you!

  • 2 weeks later...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

I'm going to get tested by my PCP in January but I would like to go to a specialist who specializes in Celiac and Gluten Sensitivity. I'm looking for a doctor in the upstate New York area between Albany and Saratoga if possible. I've been to GI's who supposedly specialized in Celiac and I ended up knowing more about Celiac then they did. What a waste of hundreds of dollars. If you know of any doctors I would really appreciate contact information.

Thank you!

Good thing I happen to be reading this section! Your topic does not say WHERE you are looking, hon-- that's probably why no one answered you!

I DO have an AWESOME doctor now that I can recommend to you!

His name is Dr. William Gusten and he can be reached at Saratoga-Schenectady Gastroenterology--office in Burnt Hills, too.

Don't waste time--call now and get an appt.

Feel free to PM me if you want to know more.

Meggielynn13 Rookie

Thanks you so much IH for your response. I actually went there and saw another doctor that was not helpful at all. Gave me the BS diagnosis of IBS. Hopefully I can get a referal to go there once I get diagnosed. I had my blood drawn for the celiac panel. Crossing my fingers that I'm not in the 20-30 percent false negative group :)

IrishHeart Veteran

Thanks you so much IH for your response. I actually went there and saw another doctor that was not helpful at all. Gave me the BS diagnosis of IBS. Hopefully I can get a referal to go there once I get diagnosed. I had my blood drawn for the celiac panel. Crossing my fingers that I'm not in the 20-30 percent false negative group :)

I'm in that club! :) A serio-negative celiac.

Dr. Gusten is different. Very good doc--open minded and compassionate. Keep me posted!

Meggielynn13 Rookie

IH-

Good news. Positive for DGP IgA, the newest test that they do. But they referred me to Dr. Boyer, not Gusten cause I have seen Boyer before. Hopefully I can switch to Dr. Gusten because he seems like he knows more than Dr. Boyer does. :D

IrishHeart Veteran

IH-

Good news. Positive for DGP IgA, the newest test that they do. But they referred me to Dr. Boyer, not Gusten cause I have seen Boyer before. Hopefully I can switch to Dr. Gusten because he seems like he knows more than Dr. Boyer does. :D

Welcome to the club!

Are you okay with this news, hon?

Are they going to biopsy as well?

I am sure Dr. Boyer will take good care of you, but I see no reason why you can't see the doctor of your choice.

Look at it this way, you can do your "I told you so dance" in front of him now. :D

Meggielynn13 Rookie

I don't think it has hit me yet. When I go to have bread and go oh wait.. can't have that it'll hit me. I hope they do a biopsy but it probably won't be positive so I'm not getting my hopes up. I'm not sure why I can't see someone else but I'll have to talk to the GI office when they call me to make an appointment.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Well, a positive blood panel is enough for any of us on here!

Let me know if I can help any further.

Living gluten-free is not as complicated as it first seems. Feeling better is worth it!!!

I have loads of info for newbies I can share and this forum is a treasure trove of helpful people!

If you have not been to Sherry Lynn's Gluten Free in Latham yet, go there and enjoy!! :)

Best wishes, hon. Feel free to PM me if you need ANYTHING!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,872
    • Most Online (within 30 mins)
      7,748

    terrymouse
    Newest Member
    terrymouse
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      That's just it. When they are doing an EGD, even with biopsy, if they aren't thinking about celiac disease they may miss it. They should take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and easily missed if sampling isn't through. And patch damage may explain lack of dramatic symptoms. Let me assure you that we frequently have posters on this forum who were silent celiacs for years and were diagnosed incidentally with celiac disease when their docs were checking for other things. They developed other medical problems such as anemia or vitamin and mineral deficiencies, neurological deficits, Hashimodo's thyroid, osteoporois, etc. - non GI symptoms - but their docs recognized those problems as often connected to celiac disease and had them checked for celiac disease, both blood antibody testing and biopsy, and found damage. A couple of years ago the Mayo Clinic did a large study involving over 300 people. They started with those officially diagnosed with celiac disease and also tested their first degree relatives. They found that almost 50% of  the first degree relatives tested positive for celiac disease and many or most were totally caught by surprise because they were largely asymptomatic. Their diagnosis was confirmed by biopsy. I really don't have anything more to say. You have some decisions to make.
    • knitty kitty
      Blood tests are affected by what you've had to eat in the previous day or two and any vitamin supplements you've taken in the past month or two.   If you have been taking vitamins before the time of the blood test, the vitamins supplements could mask a deficiency.  So get the tests before supplementing, or allow eight to twelve weeks for the supplements to wear off.    The thing with blood tests is that they measure what is in the blood, not what is stored inside organs and tissues where vitamins are actually utilized, and may miss subclinical deficiencies.  In times of shortages, the brain can order cells to release their stored vitamins into the blood stream in order to keep important organs like the brain and heart functioning.   Overall, getting blood tests for deficiencies is a good idea if it's available to you.  If you're deficient in any of the B vitamins, take a B Complex with all the B's in it.  The eight B vitamins work with one another like an orchestra.  Supplementing just one can throw the others off.  
    • Shining My Light
      Thank you @trents! This is all sound advice. In 2022 I did have a biopsy done with the EGD: SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY This would have been when the candida was found.  If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned about Villous atrophy however they were not looking for that particularly.    Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist.  Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone.    I see why it would be a “gluten challenge” since eating 4-6 slices of bread daily is a challenge to do. 😳 I would replace that with cake 🍰😉 
    • xxnonamexx
      I know I haven't been tested for Celiac yet. But If I took a blood test would they be able to say what I am deficient in as far as vitamins and minerals so I can see what supplements to take or is it not that easy to figure out what is needed to balance out vitamins/minerals. 
    • trents
      All that is exactly why you should have an endoscopy with a biopsy of the small bowel lining done. It's a very simple procedure and in the US they put you under for it so there is no discomfort. You don't even have to do a cleanout like you do for a colonoscopy.  It might also be wise to wait a few months and get the tTG-IGA checked again if nothing else. If it elevated now due to some temporary infectious process, it should not remain elevated. But a biopsy would distinguish between IBD and celiac disease. And remember, the diagnosing of diseases is often not a black and white, cut and dry process. You often have to weigh all the evidence and just go with what is most likely the cause. When tTG-IGA is elevated, the most likely cause is celiac disease. And the gold standard test for diagnosing celiac disease is still the endoscopy with biopsy. But if you decide to go for further testing for celiac disease of any kind, you must not first embark on the gluten free diet.
×
×
  • Create New...