I was officially diagnosed with PSC 5 or 6 years ago after several years of wrong diagnosis. I am currently being treated with high dose Ursodiol. I was just wondering if anyone has tried gluten free diet? After doing a little research I decided to give it a try. After all what have I got to loose? I have had some pretty intriguing results. With in 6 weeks of gluten free my Alkaline phos had dropped by 100pts. I had it repeated 6 weeks later it was still down. I then introduced gluten back into my diet and my AP increased by 70 pts within 3 months. So back on gluten I went and within 2 months it had dropped another 100 pts. My liver profile is now better than it has been in at least 8 years. Just wondering if anyone has tried or researched this? Carol
We are also trying this for our daughter (4yrs old) as she has PSC/AIH/UC and was suggested this as the SCD specific carb diet. it has great results for those who suffer from crohns and UC alone, as they are related somehow to PSC it couldn't hurt. Ordered the book 'Breaking the vicious cycle' to gain more info. Mind you it is tough- was on it for 4 days and had to look for alternatives like rice and rice flour still gluten free though. It basically says to stay away from a type of carb and artificial sugars that is in most of our foods. its fascinating reading on the net about good and bad gut flora. Only on it for about 2 weeks so far still hungry but getting used to that feeling. all the best
There is another discussion post on this site that also references the book "breaking the vicious cycle". I will have to read this! I cant imagine dealing with this as a mom of a 4 year old. My heart goes out to you and I will keep your family in my prayers. I have purchased 2 books: one is about auto immune and foods that cause inflamation and the other is a cook book that gets very high ratings called "The healthy gluten free life" This is dairy, egg and gluten free. I have just ordered the flour that she recommends and plan to cook this weekend. Please keep posting.
My daughter has ulcerative colitis and PSC and her husband and I have been wondering if a gluten-free diet would help her. Like you said, it couldn't hurt. I am so glad you asked this question and look forward to hearing from others.
Yes, hope to hear how she does. I will keep posted as well.
In response to Angelwings, I have looked at the SCD diet and it is very limiting! I plan to continue the gluten free for another 3 months first since I have had so much success but I am not opposed to giving that a try after that if needed. I will look forward to seeing progress reports.
Our son has had success with a gluten free diet.
We went gluten free (whole family!) in May 2012, and after 6 weeks my son's inflammatory markers were normal and they've stayed there ever since. This indicates there's no ongoing disease activity. However his liver enzymes remained deranged. Docs added urso to his regime in late September, and at the same time I added a broad spectrum probiotic. His liver enzymes halved every 2 weeks until he achieved his first lot of completely normal blood tests in November 2012. He has been in remission ever since. He was on prednisone and 6 mercaptopurine as well during that time. He's now off mercaptopurine, and they've reduce pred to very low dose every 2nd day. Still takes urso.
I tried probiotics after reading about the vancomycin trials in the US on this site, a case study of 2 teenagers in japan who achieved remission from PSC using probiotics, and the gluten/autoimmune research by allessio fassano. I have come to believe that the gluten free diet in combination with probiotics is a far better option than either option on its own. I also think this may explain why adult trials of probiotics for treating PSC in US had poor results.
In terms of diet, i have noticed replacing gluten carbs with other grainy carbs doesn't seem to be ideal. Our son's diet is mostly fresh fruit and veg, meat, fish, eggs and some dairy, though not much milk. He has 'treats' here and there, but seems to be most energetic and well when he has carbs from fruit and veg like sweet potato, banana etc.
Good luck!
Ali
Alimac, thank you for your reply. I do try to stay away from dairy except for small amounts of cheese now and then. When you say grainy carbs do you mean things like rice and gluten free flours? I have found several recipes I have intended to try for tortillas, pancakes etc.. I do eat alot of brown rice as well. Perhaps I need to limit these? I have a box of Allyn probiotics that I will now start taking because of your post. Thank you so much.
G'day carolq,
Yes we try to limit replacing gluten foods (bread, pasta, biccies etc) with other gluten free grains as much as possible, including rice and corn. We are somewhere on the scale between gluten free and 'paleo' (no grains/legumes/dairy). We have arrived at our position through both Ned's results and the difficulty of convincing a 9 yr old to give up any hope of ever having sushi or cakes ever again!!! He has sushi about once a month, and gluten free cake on family birthdays or special occasions, which keeps him happy.
So I suppose you could say we aspire to be completely paleo, but fall far short, at a point where Ned is maintaining both his health and his food options. I also really like that we have wiggle room to become more paleo, or even ultimately try autoimmune paleo if we need to in the future. Hope this helps! And yes, I am a lot more paleo than the kids, but I just can't give up cheese!
Ali
alimac said:
G'day carolq,
Yes we try to limit replacing gluten foods (bread, pasta, biccies etc) with other gluten free grains as much as possible, including rice and corn. We are somewhere on the scale between gluten free and 'paleo' (no grains/legumes/dairy). We have arrived at our position through both Ned's results and the difficulty of convincing a 9 yr old to give up any hope of ever having sushi or cakes ever again!!! He has sushi about once a month, and gluten free cake on family birthdays or special occasions, which keeps him happy.
So I suppose you could say we aspire to be completely paleo, but fall far short, at a point where Ned is maintaining both his health and his food options. I also really like that we have wiggle room to become more paleo, or even ultimately try autoimmune paleo if we need to in the future. Hope this helps! And yes, I am a lot more paleo than the kids, but I just can't give up cheese!
Ali
PS forgot to add... one of my boys loves 'banana pancakes' which are made from mashed banana mixed with 1 or 2 eggs (depending on size of banana) and a pinch of cinnamon. They are nice with strawberries and blueberries at breakfast. They are a bit easier to cook with a tablespoon of almond meal or other gluten free flour added to the mix, though we leave this out now.
Carolq, angelwings and Ali, thank you for your valuable information. Ali, have you got maybe any further information about these 2 teenagers in japan who achieved remission from PSC using probiotics?
All the best and good health for you and Your Children.
Augusto.
G'day Augusto,
I am sorry it was only 1 case study - not 2 teenagers as I'd 'remembered'! Article is titled 'Successful Treatment of Primary Sclerosing Cholangitis with a Steroid and a Probiotic', authors are Masaki Shimizu,* Hidenori Iwasaki, Shintaro Mase, and Akihiro Yachie.
Here is the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369409/
I particularly like the last paragraph of the discussion.
In our experience the move to gluten free had a very obvious impact on Ned's inflammatory markers - they returned to normal for the first time within 6 weeks of being gluten free. There were no other changes in his medication for several months prior to the dietary change.
What works for Ned seems to be a combination of probiotic + gluten fee diet. Although his inflammatory markers returned to normal after gluten free, his liver enzymes were still deranged until addition of both the probiotic and urso (added at about the same time, so I'll never know if it's one or the other or both that are working...).
Alessio Fassano is the researcher who identified a physiological link between gluten and autoimmune diseases, should you wish to look into that aspect.
I also don't think all probiotics are equal - we chose a broad spectrum one that is more expensive than supermarket brands, but not exorbitant.
Ned is still on very low dose corticosteroid (2.5 mg every 2nd day), and he is also on urso. He has been in remission and clinically stable since November last year.
I would love to hear if this works for anyone else. I wish you good health.
Ali
That is what I am doing. A combo of Urso, Probiotics and gluten free. I have investigated Paleo and the Specific Carb diet, and am prepared to tighten up my dietary restrictions if I have to. So far so good though. So relieved to see this is working for others! Any suggestions on brands or amounts of Probiotics?
alimac said:
G'day Augusto,
I am sorry it was only 1 case study - not 2 teenagers as I'd 'remembered'! Article is titled 'Successful Treatment of Primary Sclerosing Cholangitis with a Steroid and a Probiotic', authors are Masaki Shimizu,* Hidenori Iwasaki, Shintaro Mase, and Akihiro Yachie.
Here is the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369409/
I particularly like the last paragraph of the discussion.
In our experience the move to gluten free had a very obvious impact on Ned's inflammatory markers - they returned to normal for the first time within 6 weeks of being gluten free. There were no other changes in his medication for several months prior to the dietary change.
What works for Ned seems to be a combination of probiotic + gluten fee diet. Although his inflammatory markers returned to normal after gluten free, his liver enzymes were still deranged until addition of both the probiotic and urso (added at about the same time, so I'll never know if it's one or the other or both that are working...).
Alessio Fassano is the researcher who identified a physiological link between gluten and autoimmune diseases, should you wish to look into that aspect.
I also don't think all probiotics are equal - we chose a broad spectrum one that is more expensive than supermarket brands, but not exorbitant.
Ned is still on very low dose corticosteroid (2.5 mg every 2nd day), and he is also on urso. He has been in remission and clinically stable since November last year.
I would love to hear if this works for anyone else. I wish you good health.
Ali
G'day Carolq,
We use Orthoplex brand, and the product is called Multiflora. We are in Australia, so not sure if the same brand is available in the US.
We have also tried some cultured vegetables (Life in a Jar). Both seemed to work equally well, though my 9 year old prefers to take a capsule than a spoonful of cultured veggies! ;)
When Ned takes the probiotic in the morning, he seems to have trouble sleeping. He now takes them at night and he has no trouble getting to sleep and sleeping through to morning.
Good Health to you!
Ali
Ali and Carolq, thank you for yours replays. Ali, it's doesn't matter one or two teenagers - the most important thing is fact that somebody has overcome this awful disease :) Thank you for this link! We are starting with gluten free diet all family, too, because we want to give aid our older son (he is ill, unfortunately...) But I think that it will be safer for our younger son, too - PSC occurs in siblings, sometimes. I have read many information about gluten lately and they aren't good news. It seems to be really dangerous. Thank you for information about Alessio Fassano - it very valuable advice.
I will be writing about our diet. I hope that it will help.
Good health to you!
Augusto.
Thank you all for your replies as well. I am so glad that I found this page! I am looking forward to hearing from you with good reports in the near future. I will be praying for you all in the meantime. It breaks my heart when I hear stories of kiddos that are sick. God bless you all in your journey's.
Augusto said:
Ali and Carolq, thank you for yours replays. Ali, it's doesn't matter one or two teenagers - the most important thing is fact that somebody has overcome this awful disease :) Thank you for this link! We are starting with gluten free diet all family, too, because we want to give aid our older son (he is ill, unfortunately...) But I think that it will be safer for our younger son, too - PSC occurs in siblings, sometimes. I have read many information about gluten lately and they aren't good news. It seems to be really dangerous. Thank you for information about Alessio Fassano - it very valuable advice.
I will be writing about our diet. I hope that it will help.
Good health to you!
Augusto.
Good luck Augusto, with the gluten free diet for the whole family.
I can say that at first it seemed quite difficult for me, especially convincing our kids that they needed to give up foods they had eaten all their life. It has been 18 months now since we changed to gluten free, and it has become normal, I have become a better cook, and the kids have accepted our diet as completely normal!
I read somewhere that it takes several months to 'heal' a leaky gut - no idea if that can be backed up by science, but I thought I would mention it as it took 6 weeks for Ned's bloods to improve after going gluten free. Then it took 2 months after addition of the probiotics for his liver enzymes to return to a normal range. I just wanted to mention that this may take a few months to see any results.
I really hope it works for your family. Those of us who have to fight for our health truly appreciate its real value.
Ali
yes Carolq, it is heartbreaking seeing your child unwell. But he is well for now, and has been well for 1 year now. I hope there are other people out there who will read this and try gluten free and probiotics. It's such an easy thing to try, and it is comparatively low risk compared with most medical treatments.
Keep fighting for your health, and I hope this continues working for you. Please keep us updated, and good health.
Ali
Carol,
High dose Urso is a bad thing. The Mayo clinic would not prescribe it to my husband.
High-dose ursodeoxycholic acid is associated with the development of colorectal neoplasia in patients with ulcerative colitis and primary sclerosing cholangitis.
The American Journal Of Gastroenterology [Am J Gastroenterol] 2011 Sep; Vol. 106 (9), pp. 1638-45. Date of Electronic Publication: 2011 May 10.
Objectives: Some studies have suggested that ursodeoxycholic acid (UDCA) may have a chemopreventive effect on the development of colorectal neoplasia in patients with ulcerative colitis (UC) and primary sclerosing cholangitis (PSC). We examined the effects of high-dose (28-30 mg/kg/day) UDCA on the development of colorectal neoplasia in patients with UC and PSC.
Methods: Patients with UC and PSC enrolled in a prior, multicenter randomized placebo-controlled trial of high-dose UDCA were evaluated for the development of colorectal neoplasia. Patients with UC and PSC who received UDCA were compared with those who received placebo. We reviewed the pathology and colonoscopy reports for the development of low-grade or high-grade dysplasia or colorectal cancer.
Results: Fifty-six subjects were followed for a total of 235 patient years. Baseline characteristics (including duration of PSC and UC, medications, patient age, family history of colorectal cancer, and smoking status) were similar for both the groups. Patients who received high-dose UDCA had a significantly higher risk of developing colorectal neoplasia (dysplasia and cancer) during the study compared with those who received placebo (hazard ratio: 4.44, 95% confidence interval: 1.30-20.10, P=0.02).
Conclusions: Long-term use of high-dose UDCA is associated with an increased risk of colorectal neoplasia in patients with UC and PSC.
I was able to drop my dosage of urso at my last physician visit due to my improving labs after starting gluten free. I am now on 20mg/kg/day. The urso initially settled my liver enzymes down considerably but yes I am with you, I will share this with my physician. Thank you so much.
solsticeseeker said:
Carol,
High dose Urso is a bad thing. The Mayo clinic would not prescribe it to my husband.
High-dose ursodeoxycholic acid is associated with the development of colorectal neoplasia in patients with ulcerative colitis and primary sclerosing cholangitis.
The American Journal Of Gastroenterology [Am J Gastroenterol] 2011 Sep; Vol. 106 (9), pp. 1638-45. Date of Electronic Publication: 2011 May 10.
Objectives: Some studies have suggested that ursodeoxycholic acid (UDCA) may have a chemopreventive effect on the development of colorectal neoplasia in patients with ulcerative colitis (UC) and primary sclerosing cholangitis (PSC). We examined the effects of high-dose (28-30 mg/kg/day) UDCA on the development of colorectal neoplasia in patients with UC and PSC.
Methods: Patients with UC and PSC enrolled in a prior, multicenter randomized placebo-controlled trial of high-dose UDCA were evaluated for the development of colorectal neoplasia. Patients with UC and PSC who received UDCA were compared with those who received placebo. We reviewed the pathology and colonoscopy reports for the development of low-grade or high-grade dysplasia or colorectal cancer.
Results: Fifty-six subjects were followed for a total of 235 patient years. Baseline characteristics (including duration of PSC and UC, medications, patient age, family history of colorectal cancer, and smoking status) were similar for both the groups. Patients who received high-dose UDCA had a significantly higher risk of developing colorectal neoplasia (dysplasia and cancer) during the study compared with those who received placebo (hazard ratio: 4.44, 95% confidence interval: 1.30-20.10, P=0.02).
Conclusions: Long-term use of high-dose UDCA is associated with an increased risk of colorectal neoplasia in patients with UC and PSC.