How to find a gastroenterologist who specializes in celiac disease?

[Rhobhan]

Although I have been to three different gastroenterologists within a 100 mile area in my 13 year struggle with celiac disease, I have found none of them to be what I would consider an expert in the disease, but rather following the same playbook: ordering the same rounds of debilitating tests, referrals to dieticians etc. 

No one seems to offer much after I have been accidentally glutened. My weight plummets alarmingly with the chronic diarrhea. Currently I am headed into my 6th week of symptoms after being glutened before Christmas. 

Whenever I have called a clinic and ask if someone on staff is experienced with celiac disease I get the same, generic answer which is along the lines of, “All of our gastroenterologists on staff are qualified to treat celiac disease...” Very frustrating.

Online searches for gastroenterologists who treat celiac don’t offer much information except for a long list of conditions the clinic and staff treats.

Does this site or any other celiac site actually list gastroenterologists that are expert in the treatment of celiac disease by geographic area?

Thanks for any insight.

 

[cyclinglady]

I am sorry you are unwell.  Like you, a gluten exposure sets me back for months.  Problems with my gut last a month or so and then residual issues from triggering my other autoimmune diseases.  The last time I developed chronic daily hives all over my body that lasted over six months.  I also developed GERD-like symptoms.  A repeat endoscopy (which I kept refusing) found that almost a year after that initial gluten exposure, I had a healed small intestine, but was diagnosed with Chronic Autoimmune Gastritis.  That was the source of my GERD.  I learned that not all symptoms are due to active celiac disease.  

There is really nothing any GI can do to help ease a gluten exposure.  My first GI luckily attended a seminar prior to seeing me.  One look at my chart and seeing not GI issues, but years of anemia (and Hashimoto’s) caused him to order the complete celiac panel and endoscopy.    My current GI is young and has at least studied celiac disease (before my appointment).  He knows I am good with the diet as my hubby was gluten-free some 12 years before my diagnosis.  He can offer tests like repeating the celiac disease antibodies tests etc., but oddly, my DGP IgA was still elevated on the day of my repeat endoscopy.  

My new PCP is also young.  He too, took the time to read my file.  He even ordered all the appropriate tests recommended by celiac centers to monitor my health before our first meeting.   He is a keeper for sure.  

Are  my doctors perfect?  No, but with my own research and their medical training, we make a good team!  

[Fenrir]

Yup, if you have celiac and were exposed and that's the cause of your issue there's very little a GI doc can do for you. 

There are no shots or pills that will stop the reaction, just time, unfortunately. 

As for Celiac Spcialists, my GI group has providers that are specialized in Celiac. I started out seeing a general GI Dr.  at the GI clinic and he actually diagnosed me. Then I was transferred to their Celiac Specialist for follow up care. Minnesota Gastroenterology(MNGI) is where I went and have been very happy with the care I received.