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Confused...

Stringcheese32

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Stringcheese32 Explorer
Stringcheese32
Posted

So, my GI finally returned my call asking what questions did I have.  He said that my past GI had taken biopsies and they were fine (over a year ago).  Then he started talking about putting me on rifaximin half tablet daily, which surprised me.  So I said, "okay, you think my symptoms are all SIBO related and that I don't have celiac?"  To which he said yes.  I was rather confused as the last we spoke he wanted to do a endoscopy.  Anyhow, I asked him if anything else would cause high gliadian deamidated IgG levels.  He said my levels were all normal, however, I was looking at my labs on the Hixny website.  He said he did not have those labs, that the labs he had were all normal.  Then he asked if I got the genetic testing back - which shouldn't he know?  I said yes, I was positive for HLA DQ 7,8.  And now he says he wants to do a biopsy again.  I'm so confused with this office.  First, a woman at the office called and told me my labs were normal.  Then the GI calls and says I'm IgA deficient and he wants to do a biopsy.  Three weeks go by with no word.  Then the office calls to tell me my genes were positive and that I should remove gluten for two weeks and then see how I feel.  In the meantime, I checked the Hixny website which is a portal of all my labs, health information, etc.  and that's where I find that my DGP IgG levels were positive.  How in the heck does the office not have this?  Had I not checked the Hixny portal I wouldn't even have known that those antibodies were high and that the lab said, "probable celiac. consider biopsy".  I'm dumbfounded.  I guess this is more of a vent than a question, but geez...do I find a different GI?  This is already GI#2.  I live in northern NY in the Adirondacks - access to healthcare is rather difficult.  I generally travel to Burlington, VT (which is a 2.5 hour drive one way) for most of my healthcare.  This GI is actually only an hour away.  Ugh..

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Ennis-TX Grand Master
Ennis-TX
Posted

Sounds like they have no clue what they are dealing with and quite disorganized. I would suggest another doctor sadly. I went through several myself before finding one who actually understood it, and showed a concern and interest in my case straight up referring me to get a scoped, several blood test, and asked for me to come in every other week 3 times for more blood test for a more base line understanding of my issues.

Stringcheese32 Explorer
Stringcheese32
Posted
  • Author

My thoughts exactly - so disorganized.  I'm honestly fairly disheartened at the direction the medical field has taken.  You really need to be your own advocate, which means you really need to read peer reviewed articles and do your own research (which is not always easy when taking care of three kids under the age of 5).  My children are my real motivation in figuring all of this out as it's pertinent to their health.  They all have GI issues and a diagnosis for me means, hopefully, better care and testing for them.  Thanks for your reply, Ennis_TX!  

ironictruth Proficient
ironictruth
Posted
10 hours ago, Stringcheese32 said:

So, my GI finally returned my call asking what questions did I have.  He said that my past GI had taken biopsies and they were fine (over a year ago).  Then he started talking about putting me on rifaximin half tablet daily, which surprised me.  So I said, "okay, you think my symptoms are all SIBO related and that I don't have celiac?"  To which he said yes.  I was rather confused as the last we spoke he wanted to do a endoscopy.  Anyhow, I asked him if anything else would cause high gliadian deamidated IgG levels.  He said my levels were all normal, however, I was looking at my labs on the Hixny website.  He said he did not have those labs, that the labs he had were all normal.  Then he asked if I got the genetic testing back - which shouldn't he know?  I said yes, I was positive for HLA DQ 7,8.  And now he says he wants to do a biopsy again.  I'm so confused with this office.  First, a woman at the office called and told me my labs were normal.  Then the GI calls and says I'm IgA deficient and he wants to do a biopsy.  Three weeks go by with no word.  Then the office calls to tell me my genes were positive and that I should remove gluten for two weeks and then see how I feel.  In the meantime, I checked the Hixny website which is a portal of all my labs, health information, etc.  and that's where I find that my DGP IgG levels were positive.  How in the heck does the office not have this?  Had I not checked the Hixny portal I wouldn't even have known that those antibodies were high and that the lab said, "probable celiac. consider biopsy".  I'm dumbfounded.  I guess this is more of a vent than a question, but geez...do I find a different GI?  This is already GI#2.  I live in northern NY in the Adirondacks - access to healthcare is rather difficult.  I generally travel to Burlington, VT (which is a 2.5 hour drive one way) for most of my healthcare.  This GI is actually only an hour away.  Ugh..

I live in Central NY and am giving up on GI's here being knowledgeable about celiac. I am driving to Mass General in Boston next month.  They have a Celiac Center there. It might be worth your drive. 5 hours for me. I like my current (also 2nd GI) much better then my first as he actually listens and is willing to order obscure tests but also explore simple things like SIBIO.  But something is still missing. I have already wasted tine, vacation from work and tons of $. I want to feel better! I figured it might be good to do 1 or 2 specialist visits as long as my local GI is receptive to suggestions, which I hope he will be. My celiac sibling lives in VT and saw his doctors in Burlington. I can always ask who he saw. 

IFit-Celiac Rookie
IFit-Celiac
Posted

Oh my ? My advice to you is request for all your medical records from the current Doc and take them to a new Doctor to continue your investigation. One that is more knowledgeable and organized, where the nurse and Physician are unified in what there saying to you ?? I am a huge advocate to finding the right Doctor for you, even though it may be a sacrifice in some areas as I know it's not cheap or easy to continue the search for a Doctor. But when it comes to your health, your what's top priority and you deserve the best treatment! Hope you have a better experience in the future, look forward to hearing how it all turns out ?-Cristina

icelandgirl Proficient
icelandgirl
Posted

Hi StringCheese...how very frustrating!  You absolutely have to be your own advocate and fight for yourself to get results.  I think getting a new doctor would be best...this one seems to be clueless and out of touch.  I have been there...I've walked out after an appointment to my car, sat in there and cried out of frustration.  

Keep eating gluten until all testing is complete...hang in there!

Gemini Experienced
Gemini
Posted

There is an ex-forum member who had a fantastic GI in upstate NY, nearer to the Massachusetts border.  Let me try and get the information on him for you because it might be closer than going to Boston.  He was very Celiac savvy.

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ironictruth Proficient
ironictruth
Posted

I will stand in line for a celiac savvy GI in Upstate NY!

Gemini Experienced
Gemini
Posted
13 hours ago, ironictruth said:

I will stand in line for a celiac savvy GI in Upstate NY!

The name of the doctor is Dr. William Gusten.  He is located at Saratoga-Schenectady Gastroenterology. I hope that is closer to where you live.

My friend told me that when you call for an appointment, tell them to book the first appointment available in any of the offices they have.  She really likes this guy and says he is very compassionate and listens. He knows a lot about Celiac and actually enjoys learning things from his patients. He was the only doctor who helped her in years of searching so I hope you have the same experience with him.  I know how hard it is to find the right doctor. Good luck and let us know what happens!

ironictruth Proficient
ironictruth
Posted

Excellent!

Stringcheese32 Explorer
Stringcheese32
Posted
  • Author

Thank you all so much!  You all are amazing!  The last several weeks have been very stressful and your continued advice and listening ears have been my light - so thank you!  Gemini, the Albany area is not that far from me either.  Perhaps 2-2.5 hours, certainly closer than Boston.  I'd honestly travel anywhere to get this figured out more promptly.  Thanks again everyone!

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      Son's legs shaking

      By knitty kitty · Posted

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