So many questions

[Steelersgirl67]

I was originally diagnosed with non alcoholic fatty liver disease, but after seeing a liver specialist they have decided that I have NRH with non-cirrhotic portal hypertension and celiac disease. I don't know if this is the place I should be, if not I apologise. I am overwhelmed and don't really know where to start. I know that all medical questions should be directed to my doctor, but I am just looking for someone else who is dealing with something similar.

[nash2 Partner]

Hi Steelers

Wow, NRH you say, you are fairly rare person. Not unheard of but I don't recall anyone here who has reported that. However, this still may a good place for you. For the benefit of our other members who don't know NRH, it is somewhat like the cirrhosis that most of us deal with except the scar tissue forms nodules rather than sheets and leads to portal vein pressure much like NASH does. Many people here share your concern about portal hypertension and like NASH, NRH is generally slow moving and difficult to diagnose. The physical results of portal pressure are the same. Since you also report having celiac, one would assume that you are dealing with some kind of autoimmune challenge like many others here. None of that helps you I realize but you aren't really a stranger to this group even though NRH is fairly rare.

Best wishes

Wayne

[Steelersgirl67 in reply to nash2]

That actually helps more than you think. Just knowing that there are other people who have to have a endoscopy every 3 months and deal with all of the other stuff, nice to know I am not completely alone.

[Ocean_ovna in reply to nash2]

Very correctly described about the changes in NRH.

[Chefpat]

I too have been diagnosed with NRH. You are the first person I have come across with this diagnosis too. It has been very difficult for me to find any information about. I’d love to hear more from you about how you’re doing.

[Steelersgirl67 in reply to Chefpat]

The way the Dr explained it to me was that the cells in the are thicker than normal which makes it harder to filter the blood. The blood backs up into the spleen, which causes the spleen to enlarge, build up pressure and cause Esophageal varices.

I won't bore you with the list of other medical issues, because there's a list. I am so happy to meet someone else dealing with this condition (not happy that you have this). I have a very low platelet & white cell count. How did yours start? What kinds of issues are you dealing with? Sorry if I getting to personal but I would like to know everything that you would be willing to share

[Arian2]

What tests you did that confirmed NRH ?

[Steelersgirl67 in reply to Arian2]

Liver biopsy

[Steelersgirl67]

I had a liver ultrasound, MRI, and a liver biopsy

[nash2 Partner]

I'm glad you two connected. Just a perspective that might be helpful. All of the discussion about dealing with portal hypertension in this group applies to your challenges. The low platelet count and enlarged spleen are the same for NASH and NRH so the varices and related issues are common with this group.

[Steelersgirl67]

Ok that's good information, thank you. Is anyone also dealing with ascites?

[nash2 Partner]

Lots of people who are coping with that as well. A few stories of patients might be of interest to you. You got here by an uncommon path but the issues are similar.

fattyliverfoundation.org/pa...