2 Years Post Harvoni - Celiac Disease

[WholeFoods]

So this is something that I started noticing about 8 weeks into Harvoni treatment a couple years ago, some type of inflammation in my lower right abdomen and increase discomfort after eating.... gas, belching, frequent bouts of diarrhea that have worsened over the last couple of years since getting off treatment. It got as bad as vomiting and diarrhea at the same time a few weeks ago after I ate a bunch of gluten. After that, I went back on the food challenge diet my naturopath put me on several years ago when my gall bladder went bad and pretty much have figured out it is definitely a severe gluten intolerance. Probably would be professionally diagnosed as celiac disease, as avoiding gluten has made all these problems pretty much go away. I already can't eat anything with pepper in it and eggs are dicey, must go light on dairy. Been doing some reading and see a tie-in with all of it... hepatitis c and high incidence of celiac, then celiac having high incidence of intolerance to eggs (cuz chickens eat gluten feed) and often dairy intolerance for the same reason. Doesn't seem to be a tie in with pepper intolerance though, other than that my intestines might be raw enough to get totally irritated by it. At any rate, I think the Harvoni brought an underlying autoimmune disorder to light as CD is rated as autoimmune/hereditary in nature. Okay, I'm sad. So tired of avoiding this and that and having to eat everything at home. I'm losing weight again. 

[strangerbynight]

May i ask what stage of your liver at the time of treatments? Other than CD do you feel better? Does the symtoms go away if any? Thanks

[WholeFoods]

I suspect was nearing stage 3, if not stage 3. Last biopsy was stage 2 in 2011 at the time of gall bladder surgery, which I feel the surgery caused a decline. Other than CD, yes, I believe other symptoms went away, or lessened. I attribute many symptoms experienced to the CD, such as muscle aches, joint pain, headaches, weakness, dry eyes, vomiting and diarrhea. Recently have been having tinnitus again, first time since treatment, but not sure if it's related to CD issues or what.

[strangerbynight]

I suspect was nearing stage 3, if not stage 3. Last biopsy was stage 2 in 2011 at the time of gall bladder surgery, which I feel the surgery caused a decline. Other than CD, yes, I believe other symptoms went away, or lessened. I attribute many symptoms experienced to the CD, such as muscle aches, joint pain, headaches, weakness, dry eyes, vomiting and diarrhea. Recently have been having tinnitus again, first time since treatment, but not sure if it's related to CD issues or what.

Thanks for your respond, i am getting a bit worry now, lately i have been reading that some people are having issues after treatments with harvoni, some are serious and some are minor, i am worry because i am now at week 7 of generics harvoni, the more i read the more i am worry, i hope its not harvoni related, although my liver is at F0-1 minimal or no damage but i am still scare because these drugs has been on the market few years only, i am hoping it does not cause any issues.

[WholeFoods]

I understand your worry. I was worried too. However, my health was in decline, so I felt the need to take the chance. Stay positive and if you believe, then pray everyday. I remain hopeful that even the celiac problems I picked up will lessen with time. Some people, even at stage 1, feel bad enough to want to be cured. The body is an amazing thing, the better you treat it, the better you will feel. Make it a priority to take very good care of yourself for the next couple of years and try very hard to avoid stress of any kind, as much as possible. That is the one thing I was not able to do while on treatment. I endured an ungodly amount of unavoidable stress at work while on treatment, but once I got home at the end of each day, I spent the whole time taking it easy, taking daily walks, eating right and getting good sleep. Best of luck to you for a good outcome and try not to worry, just look forward to being cured and rejoice in that.

[strangerbynight]

I understand your worry. I was worried too. However, my health was in decline, so I felt the need to take the chance. Stay positive and if you believe, then pray everyday. I remain hopeful that even the celiac problems I picked up will lessen with time. Some people, even at stage 1, feel bad enough to want to be cured. The body is an amazing thing, the better you treat it, the better you will feel. Make it a priority to take very good care of yourself for the next couple of years and try very hard to avoid stress of any kind, as much as possible. That is the one thing I was not able to do while on treatment. I endured an ungodly amount of unavoidable stress at work while on treatment, but once I got home at the end of each day, I spent the whole time taking it easy, taking daily walks, eating right and getting good sleep. Best of luck to you for a good outcome and try not to worry, just look forward to being cured and rejoice in that.

Thanks for all the positive advice, i am and i will continue to try to not stress myself and worry, i could have had this hep c for 38 years but for the last 5 years things started to drag me down from anxiety to stress that came suddenly and its been hell for me, but physically i am in a good health just mentally tired, and things got even worst when i accidentally found out i have hep c in feb this years, its been very rough for me but i am now slowly get myself back together and fight this virus, i got another 5 weeks or so left on the treatments so i am hoping for the best outcome in the year 2018..

[WholeFoods]

Yes, anxiety and stress can happen when liver function not working well. Extra toxins and not enough nutrition in the blood make the brain not work right. Not to mention, immune system constantly keeping the virus in check, it's a lot of behind the scenes work. It is a systemic disease, for sure. I still get that when I overdo things. You might get to where you feel like you can't do much at all without getting overly stressed and worn down while on treatment too, and for many months after, but it will go away with time. Keep perspective, we're all getting older, so can't expect to keep going like we are in our 30's. It's a lot to deal with if you just found out in February. 38 years and only f0-1? That is very impressive. You most likely are going to be just fine.

[andrew j]

Hi WholeFoods,

I have been controlling my diet for a long time, now ... maybe for seven, eight ... even ten years plus?
I was really unwell when I had Hep C - and, like many people, learnt that my symptoms could be controlled, at least to some extent, with the right dietary choices.

You seem unsure about whether you are gluten-intolerant or have celiac disease?
It makes quite a difference, I think.

I am gluten intolerant.
My dietary limitations appear to be similar to yours.

Don't despair!
A lot of people have to deal with dietary limitations these days.
It gets better ( ... and you will no doubt have more skills than you realise, already!) ...

More generally, it seems that you are having a rough time re-adjusting post-Tx.
That must be tough.
No doubt you have been checked out by a doctor - and, did you say you have been seen by a naturopath?

... It might pay to have another check-up sometime soon? ...

But getting back to the dieting:

I'm not vegetarian ... I live mostly on fish, rice products, oil, and vegetables.

I'm happy to share some of my tips and strategies with you, if that's what you want.

Hoping that you are doing OK today - and

Best wishes,

A.

[WholeFoods]

Thanks for your reply Andrew. It's definitely celiac for me. Been to the Dr., etc. severe gastrointestinal problems and malabsorption going on. I too have been controlling diet for 17 years. This is just going to make it all the harder is what I'm saying. My life being what it is, I have a tremendous burden. Am not surprised this happened post-TX. As I advised the other poster in this thread, I think everyone on treatment should do all they can to reduce their stress level. Stress has a direct affect on the gut. Do you get where I'm going with this? I'm just sad because my weakness has always been gluten. It's not a huge surprise that this winning combination has produced CD. My dad had severe gastrointestinal problems his whole life and died of metastic liver cancer at 73. Likely he was undiagnosed CD. My cousin on his side has problems too as did my grams on his side, but she lived into her early 90s. My daughter probably has it, unexplainable low vitamin k and chronic anemia. Doctors here are hesitant to run the gamut of testing for this DX because insurance companies typically won't pay. Rather, they take family and symptom history, then do the dietary challenge to make the DX.

[andrew j]

I do get where you're going with this, I think, WholeFoods.

You have been seriously unwell since you did Tx ... potentialities that might otherwise have remained dormant have instead sparked into life - and (not surprisingly), you are feeling sad about that.

I'm really sorry, eh?

I am also sorry that the health system over there (I live in New Zealand) isn't more sympathetic to what's going on for you.
Celiac issues are well supported here.

I can only tolerate a [very] small amount of gluten - but if you can't tolerate any - it does make things much more difficult.

... Naturopaths? ... Nutritionists? ...

I still have contact with a nutritionist (who might also be a naturopath, I think?) ...
She is very good.

Thinking of you - and

Best regards,
Andrew.