Taste sensation GONE - IBD, Eosinophilic Gastroenteritis, Crohn's

Posted by tazo @tazo, May 14, 2020

Is there any hope that I will ever again enjoy the taste of any foods? Initially diagnosed in 2015 (age 67) with Eosinophilic Gastroenteritis and Ulcerative Colitis (unusual to have eosinophils in the ENTIRE GI tract) was prescribed Budesonide (for 90 days), Mesalamine and Omeprazole (for stomach ulcers) which seemed to ward off most of the ill gastronomic effects until December last year when I was having an increased number of watery stools to the point where it got to be as many as 15 a day. I also started having mouth sores, "geographic" tongue and the sensation that the inside of my mouth was sensitive and at times swollen tongue felt like it was scalded. To shorten the story, after more tests and scoping, the diagnosis is Crohns with a side dose of E-coli. Discontinued the Mesalmine, took the antibiotic for the E-coli and was put on 200mg Azathioprine daily on April 27. As of today the stools are more well-formed (not totally so) and the frequency is down to a max of four a day first thing in the morning (which is a blessing!). However, I still have the "scalded" and fizzured tongue with white bumps, with a flat, smooth surface (no papillae?) in ADDITION to having NO SENSATION OF TASTE AT ALL. The gastroenterologist says he doesn't have any experience with mouth issues and advised me to consult my dentist??? Gastro doc has had a practice for over 15 years! I'm hoping that others may have a similar experience having a cessation of mouth issues and a return of taste sensation. OR am I doomed to satisfy myself with what I have?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

John, Volunteer Mentor | @johnbishop | May 15, 2020

Hello @tazo, Welcome to Mayo Clinic Connect. I wished I could answer your questions. I know how hard it is to not know the answers to what is causing your symptoms. I do applaud you for reaching out and seeking answers and also trying to learn as much as you can about your health conditions. I think that's something we all need to do. There is another discussion on Connect where you might find some answers - Problem with Tongue: https://connect.mayoclinic.org/discussion/problem-with-tongue/. Also, I found a couple of articles that may be helpful to you.

Geographic Tongue: https://www.mayoclinic.org/diseases-conditions/geographic-tongue/symptoms-causes/syc-20354396
What can cause spots on the tongue?: https://www.medicalnewstoday.com/articles/322841

Have you thought about seeing an ear, nose and throat (ENT) specialist or possibly getting a second opinion?

Amanda Burnett | @amandaa | May 15, 2020

Hi @tazo, I echo @johnbishop 's welcome. I have UC and I know the difficulties that come with having multiple gastric problems. I agree with John that seeing an ENT might be very helpful. It hasn't been proven, but there have been studies on linking Oral Lichen Planus to autoimmune disorders. You might want to consult with your physician on that. Here is a link on that from Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/oral-lichen-planus/symptoms-causes/syc-20350869

In addition to the loss of taste, are you having pain in your mouth and tongue?

oldkarl | @oldkarl | May 15, 2020

@tazo, Sounds like a systemic form of some hereditary protein disease to me. There are several that include the loss of taste and/or smell. Trouble is, they can only be finally diagnosed be investigating molecular issues to discover liver mis-folding of non-dietetic proteins. The current favorite process is Mass Spectrometry. Only a few labs in the country can do this, Boston, Johns Hopkins, etc. But your descripting fits an early onset pattern of mine, Gelsolin (Finnish) Amyloidosis. I lost most of my smelling and tasting ability several years ago. But it can be selective. I can smell onion, but not roses. Not good!

tazo | @tazo | May 15, 2020

In reply to @amandaa "Hi @tazo, I echo @johnbishop 's welcome. I have UC and I know the difficulties that..." + (show)

Thank you for the suggestions. ENT is next on my list to visit for sure. From the tip of tongue back 1/3 has fissures. These burn and is sensitive to some foods and I will sometimes bite my cheeks if I'm not careful chewing, and of course, that hurts but past that no pain. 2nd third of tongue is flat and shiny and all the way back is white bumps. The strange thing is that the roof of my mouth and tongue are very smooth. I was never aware of any texture to my mouth until I didn't have it any longer. ENT is next stop. Thank you so much.