gi doc- colitis, outobstucted defication, celiac, disaccharide deficiency, lactose intolerant

[robbiedt]

 hello,

I am reaching out to all of you for help in finding a new GI doctor. After years of going to the same motility doc in Ma, I went to Augusta GA to see Dr. Rao for motility. He  is a motility guru. While there, he ran a bunch of tests that I truly don't understand why they were never run by my GI doc here. I have colitis, blunting of my villi in my small intestine (the pathologist did not think it was celiac but Dr. Rao thought it may be the beginning of celiac and suggested a gluten free diet). I also am lactose intolerant and have generalized disaccharide deficiency. So here I am, with obstructed defecation(constipation, intussusception from straining), colitis, lactose and sugar intolerant and possibly have celiac or early celiac.   I need a good GI doc who can help me especially with a diet to clear my colitis, and help me with the celiac issue. I am now gluten free but UMASS does not really have great GI docs for celiac and motility.  Does anyone know of a doctor in Ma who can help me. I personally think taking miralax for 8 years and needing to have diarrhea to go to the bathroom has caused my colitis, blunting of my villi,etc. but my GI doc does not think so.  If anyone knows of a good doc or two in Worcester, that would be great but I am willing to go to Boston and fight the traffic.

Is there anyone here who uses Mass General or has the name of a doc there? I see they say they have celiac program and a colitis program and the programs are interdisciplinary but I  do not see any doctor's names and I like to check out reviews before just calling the center and not knowing what doc they will give me a an appointment with. Also, is the blood test for celiac reliable?  

 thanks in advance

 

 

[GFinDC]

Hi robbiedt,

You can find some information on testing on the U of Chicago celiac center site.  But short answer, the celiac testing we have now is not perfect yet.  It gives false negatives sometimes and false positives sometimes.  Not often, but it does happen.  Also, some people don't even make much IgA antibodies, so the IgA based tests are no use for them.

There are IgA, IgG and ttg IgA antibody tests.  please don't go gluten-free until you have all the testing completed.  Usually there is a blood antibody test followed by an endoscopy to take biopsy samples.  They check the biopsies for damage characteristic of celiac disease.

You can live well with celiac disease if you take the time to learn the gluten-free diet and stick to it.  Recovery is not always super fast, but it is possible.  And even likely!

Open Original Shared Link

This link has a list of many celiac support groups in the USA.  Hopefully the Massachusetts group is active and can recommend a good doctor to you.

https://www.celiac.com/articles/227/1/A-List-of-Local-Celiac-Disease-Support-GroupsChapters/Page1.html

There is a Newbie 101 thread in the Coping with forum subsection that might be helpful.

Welcome to the forum robbiedt!

[cyclinglady]

1 hour ago, robbiedt said:

 hello,

I am reaching out to all of you for help in finding a new GI doctor. After years of going to the same motility doc in Ma, I went to Augusta GA to see Dr. Rao for motility. He  is a motility guru. While there, he ran a bunch of tests that I truly don't understand why they were never run by my GI doc here. I have colitis, blunting of my villi in my small intestine (the pathologist did not think it was celiac but Dr. Rao thought it may be the beginning of celiac and suggested a gluten free diet). I also am lactose intolerant and have generalized disaccharide deficiency. So here I am, with obstructed defecation(constipation, intussusception from straining), colitis, lactose and sugar intolerant and possibly have celiac or early celiac.   I need a good GI doc who can help me especially with a diet to clear my colitis, and help me with the celiac issue. I am now gluten free but UMASS does not really have great GI docs for celiac and motility.  Does anyone know of a doctor in Ma who can help me. I personally think taking miralax for 8 years and needing to have diarrhea to go to the bathroom has caused my colitis, blunting of my villi,etc. but my GI doc does not think so.  If anyone knows of a good doc or two in Worcester, that would be great but I am willing to go to Boston and fight the traffic.

Is there anyone here who uses Mass General or has the name of a doc there? I see they say they have celiac program and a colitis program and the programs are interdisciplinary but I  do not see any doctor's names and I like to check out reviews before just calling the center and not knowing what doc they will give me a an appointment with. Also, is the blood test for celiac reliable?  

 thanks in advance

 

 

Welcome.  Mass General?  Anyone in their celiac center should be able to help you.  They are one of the leading centers for celiac in the world!  

But...I must tell you that any celiac testing rquires you to be consuming gluten daily for about three months or just 2 to 4 weeks if you have having an endoscopy.  

[Gemini]

Mass General is a very rigid, mainstream hospital and I have heard of a couple of complaints about how people were treated that makes me think twice about referring people there.  They do not think outside the box at all.  I think they are great for emergency medicine but with chronic disease, they may not be much better than any other place.  If someone has no idea who to go to, then I would say give it a chance but just because it is Mass General does not mean they are the end all, be all of Celiac Disease treatment.  I would suggest calling and asking for the doctor's names so you can research them on-line.