Hi everyone;
I have been living elevated alt ast and ggt formthe last 15 years. These values go down as soon as i start taking ursoactive. I had all relevant tests done inc liver biopsy; all clean / no fat no fibrosis etc...
Is anybody else having the same type of thing?
Any help would be highly appreciated!! Thx
Hello. Have you gone to a Hepatologist (a liver specialist) instead of a Gastroenterologist? I’m assuming your AMA M2 is negative. The AMA M2 is more PBC specific than just an AMA. Maybe you need specific tests for a genetic issue such as hemochromatosis etc. If they go back to normal with Urso then maybe it’s AMA negative PBC early stage that isn’t showing on liver biopsy yet. Remember during biopsy they take a small portion of liver, and that portion isn’t showing anything abnormal yet. I personally would stay on the Urso to keep the liver numbers normal. Less damage to the liver. Also, have another liver biopsy by a different doctor as it may show something the next time. I had to have 2 biopsies in a short period of time for a second opinion myself.
Hi Hotin
Thanks for your reply.
Yes all these tests came out normal/negative ; AMA, AMA M2, ANA, Anti SLA etc...
Yes i started taking urso again a couple months ago and will prolly be taking it for another long period of time...
You are so much like me. After 16 years my ANA just went positive now & is very confusing. One last thing to try...I was diagnosed with celiac disease. Have you been tested for that? Once I cut out gluten all my liver numbers went to normal without Urso and have remained that way for a few years now. Gluten is a huge problem for all people but especially for anybody dealing with autoimmune stuff.
Yeah, seems so...!
Yes i got tested negative for celiac but heard that celiac tests can result negative, although you actually have celiac... and diary / gluten intolerance or allergy could cause elevated enzymes. Not sure if its correct..
I have never tried to cut gluten, just bec the celiac test is negative. Maybe i should do that and test ..!
I would cut out all gluten, remember it’s hidden in almost everything. You don’t have to test positive to have an issue. My husband tested negative but has gluten sensitivity. All his issues have gone away since being on my diet with me. I also don’t eat any grains or pseudo grains, no soy, no dairy, very little sugar, no lectins or nightshade either. All my numbers have remained normal with no medication. Try it, and let me know in a few months how your blood work is doing. Good luck!!
I am cutting gluten starting from tomorrow and will get my blood tested next month...
Will let u know for sure👍🏻
Thanks a lot again!
Gluten is absolutely not a "huge problem for all people". The entire gluten issue is largely a tremendous fad that is only benefiting the food manufacturers who charge inflated prices for gluten free products.
Trust gastroenterologists, they're the experts in human gut function. Im not an expert but my graduate education provided me the ability to understand medical jargon and I read medical journal papers about PBC and my other health problems. And, celiac disease is very real but only occurs in about 1% of the population. You can also not have celiac disease but be gluten sensitive although that also doesnt occur at a high rate.
One important note to the original poster: if you want the best doctor to give you the most accurate diagnosis then definitely get a referral to the nearest Medical School.
Thanks for that Cord!
Wow! You absolutely do not know what you are talking about at all. You are spreading false information. I’m positive I have more schooling than you do, and on top of that my entire family are doctors. My brother in law is a gastroenterologist. He even says that hepatologists have more training than he does on the liver specifically.
On the topic of gluten, you are absolutely 100% incorrect. My sister who is a Rheumatologist in a very large city says gluten is responsible for aggravating if not causing autoimmune diseases along with intestinal permeability caused by the gluten. She has seen thousands of patients go into remission by not ingesting gluten. IT IS NOT A FAD, no matter what you spew. Since my brother in law is a gastroenterologist in a large city, I should know what I’m talking about as I do talk to him quite frequently. Wait until I show him your post.
FYI,...you absolutely can, not have celiac sprue, but be gluten sensitive per blood work that you must not be aware of. My husband is a perfect example. He does not have celiac disease per biopsy, but has the specific blood work proving he is sensitive to gluten. You can call it gluten sensitivity or gluten intolerance per gastroenterologists.
So in the future, do not talk about things that you are not educated about. What I have said in these posts are passed along to help people, and that have been stated by medical doctors, not a graduate student as yourself who is not a doctor.
I take offense to your post. Get educated before spreading false information.
Hotin; a question..
Did your husband also have high enzyme values before he started gluten-free diet?
Hello, yes he did. He always says he caught PBC from me (Ha! Ha!) They have also normalized. Although it took longer than mine (probably about a year) but he did/does not have a positive AMA as I do. It actually took mine about 6-9 months. But I am on a very strict diet, not just gluten free. It was about 12 years ago that all this started, so I can not remember exactly how long.
I am sorry about the CCordier poster. She has no credibility. I had this problem with the PBCers Org., people spouting medical info. that was incorrect & misleading. I really think some people have nothing better to do in their life but cause problems and upset people. She absolutely has no idea what she is talking about. I've got 5 physicians in my family and I'm a certified nutritionist, and have had PBC for 12 years, so I have credibility.
Good to know... many thanks 😊
hotin AZ Hello, Iam thinking about diet without gluten and sugar etc. Do you have some favourite books or web sites about diet? I really appreciate your personal experience. Thank you a lot from Czechia😍
Hello,I'm sorry, I don't have any suggestions for books etc. I just eat a lot of salads with different veggies (all organic of course), organic chicken & wild salmon, a little organic fruit as it's high in fructose, and stay away from all processed food out of a box, bag or can. The diet is boring, but it is the healthiest way to eat. I do splurge on organic, low sugar, dark chocolate from Pro Cap Labs. Hope this helps.
Thank you very much for your answer. I struggle with lack of energy so I think about new diet without dairy products and gluten. Can I ask you if your diet is able to influence tiredness. Have a nice day. You are so kind.
Since fatigue & lack of energy is common with this disease, diet is extremely important. I am able to stay awake and active for about 16 hours. I do sleep about 9 hours a night. Good luck in your journey.
Thanks a lot. Good luck too. I hope that I will be so disciplined as you are. The fact that you dont need to use urso is really impressive. Take care of yourself. Thank you again for your answer. In the Czech Republic we dont have any organisation focused on this disease and I dont know any other pacient. So your personal experience is really valuable for me. 🥰
You GP can run a bunch of tests..you can easily have a low level kidney issue...you need a whole battery of blood work to rule stuff out ....it's not uncommon if you have a mild or very rare disease for it to take years to determine..often a young GP will think of all weird stuff from school to test for to narrow it down and will run your results by different specialists..
New doctors very eager to ask for help...
Rita
Yes Drummer1984. Omg!! I have for over 17 yrs now high liver enzymes steadily like 180 to 798! So, I was told I had 3 months to live right about 3 weeks before Covid shut down all docs and or any labs to be drawn, no nurses to come for transfusions and no where for me to go get iron and blood transfusions. Very mind “phucking” situation for anyone. Told I had lupus 17 yrs ago when they first told me I had high enzymes and I needed a transplant and as a single parent of 4 just praying i can raise my kids since nobody else available and very scary for 17 years than my pancreas had an issue like 6 months before COVID-19 I was admitted and treated for this along with getting lots of iron infusions and lots of Itching omg so I was told I had “restless leg syndrome” I was put on medication for that. The itching stopped but I could not even walk to the end of my driveway. My legs were heavy felt like I was walking with my legs in concrete buckets or quicksand! My Rhuemotologist who has been treating me for Fibromyalgia/Lupus said “your liber enzymes are not good! You have 3 months to live”! He was sooo stern and made me look in my eyes. Woww! I thought what’s his problem?! Now after almost year and half, I was mad as I drove home and cried thinking whyyy say this to me so harsh and with no family or friends”! Like what doctor or whooo does that to another?!’ Now, I go to Adventhealth Liver Transplant Hospital and take 1000mg of “Urso”! OMGG after 3 months of labs my wonderful Doctor said “Woww usually this medicine takes longer to show such positive results!” He was so excited just as excited as I was. My enzymes went from 798 to 130 in like 3 months. I can walk and often walk all around my neighborhood just because I can. I can now stand and cook AGAIN! My love and passion. I can now work for first time in 15 good years!! I feel 20 years younger! I want to live at Disney World LOL !! Honest I do. And I can not say enough for this medication and my wonderful doctors and my dear friends n children. It’s been a long 17 plus years! But, now I look forward to to 30 plus years at my now 51 years young age! I know you can’t see me smile ear to ear but wow I am with a huge smile and sigh of relief! I say this because I thought I was dying all those many years. Thank you for whoever invented this medication and technology and my doctors and this site! All of you! I am elated to be living in these times that have social media and man medicine and intelligence of the many doctors! I pray for all who need it with any life threatening and mind F’ing sick diseases, the unknown kind as of yet and the known kind. I always just wanted to call it something BECAUSE I was NOT a hypochondriac! I was not making excuse to not work! It wasn’t my fault period!Thank you God 
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