Gluten and it's affects on the Liver and PSC

Symptoms & Treatment Complementary Therapies
1

Hello everyone,

If you have ever wondered about all the latest talk about Gluten intolerance and Celiac disease and if there is any connection between PSC, PBC or liver disease, then please read the attached article.

http://www.celiaccentral.org/Celiac-Disease/Related-Diseases/Liver-Disease/51/

Gluten intolerance can impact the liver and PSC, PBC. I was amazed to learn that gluten can also impact peripheral neuropathy.

When I started hearing about gluten I thought this was just another diet fad. I was totally wrong. I am getting tested for celiac to rule this out then I will eliminate gluten. I am motivated now. If you are suffering from fatigue, diarea after you eat, stomach pain, gas, bloating but your labs don’t support a PSC flare-up, you might have an issue with gluten. Sometimes eliminating possible problems can be helpful to your Doctors.

Let me know what you think !

Stephen

2

Dear Stephen,

Thank you once again for your post. This is so true. The only thing is some doctors still believe that there is no correlation between "gluten" and "ulcerative colitis". I spoke to a Naturopath that explained to me that the test they use is extremely dated and waits until all the villi has been eroded before it diagnoses you. He then handed me a DVD with a Medical Seminar held in the USA. It was hours long, but was filled with loads of information. When I took my daughter off gluten I saw a vast improvement. I remember speaking to one of my daughter's nurse practitioners and when I mentioned I noticed the difference when my daughter ate gluten pizza, her response was, "We want to get her where she can enjoy pizza without the flare-ups, so we can increase the medication.". My stance is to take away the food if it is causing discomfort.

Anyway, take care for now.

PrincessD's Mum

3

I was diagnosed with PSC almost 2 years ago now, im 53 years old. Since my diagnosis i was also diagnosed with Celiac disease and had numerous pre cancer polyps removed from my bowels. After numerous trips to emergency and batteries of tests, it was found that my gallbladder needed to be removed due to infection.

I have been going every three months to Toronto General to see the Liver specialists, and they are amazed at the response my body has had to A: being Gluten Free, B: eating healthier, C: taking many different Supplements that by the way were never authorized by my specialists!

Here is the list in order of what i take every day as set up by my Holistic Doctor along with the help of my Chinese doctor/ acupunturist.

L- Glutamine Powder 1 tsp with water the moment i open my eyes!

With a light breakfast:

Potassium 50mg

Zinc 50mg slow release,

Vitamin B advanced 3 daily

Gandha 600 2 times per day

Lecihin Granules

Flax oil 1tbs

Nutra sea Omega 3 fish oil 1 tsp

UDO,s Probiotics super 8 plus

UDO,s Ultimate digestive enzyme, right after big meals, or meals with meat protien

Vitamin D

Viatmin C 500 2 per day

I first started on a regime of drops, that are to numerous to list here to help my lymphatic system and my adrenal glands as noted by my holistic therapist.

She felt that we cant try and treat an auto immune disorder directly, but more so help the body to function properly and help all the systems, including the liver to work better.

I felt like crap at the start of the journey, but as i progressed, i started feeling better, my liver and blood numbers are back to normal for at least a year, the fact that i dont each gluten, no more indigestion , bloating, headaches, body aches etc.

I was amazed after doing one of three liver flushes, that my shoulder pains, abdominal pains disappeared.

My last visit the specialists said, see you in a year! They are scratching their heads, and asked me to detail what ive done, for my next visit.

This may not work for everybody, but i can tell you, that the holistic approach worked for me and being gluten free has had an affect on my liver,

My skin feels different, i am growing hair like never before, i sleep better even though i have severe sleep apnea, i have a sense of better well being and i can say that fighting the demon ( depression) is a battle won by better body health.

Remember the day you were told you have PSC and that your life may be shorter than you think or want, all this scared the crap out of me and i was depressed until i started the regime of fighting for a better healthier me!

Best to all

Charles

4

Dear Stephen,

I am glad you do. At the time I felt that I must be CRAZY as I seemed to be the only person who wanted to get my daughter off medications if I could, not increase them so that she "could" eat pizza!!!!!! LOL

We never use to, I would just cut out everything "gluten" by reading the labels. My daughter's treat foods became "Thai Express" as they do "gluten-free". Sushi had to be stopped because of the "gluten" they used in the sauce. Then as I came across more "gluten-free" products, I reintroduced them.

Last December I tried following the Paleo Diet. We are not STRICT, but I try to cook everything from scratch. I do give her "gluten-free" pasta, rice-noodles etc. When we eat out I always explain that she is gluten intolerant and we get things that are "gluten-free" and "dairy-free". We choose where we eat out. The only fast food she is allowed is "Thai Express" as they cater to "gluten-free". It is not easy at first, but I have noticed as time goes by more and more places are offering options. On the other hand home prepared natural foods put less pressure on the liver, so I try my best.

If you need any pointers please do not hesitate to ask.

Take care for now.

Mel x

5

Dear MAG,

Thank you for sharing all that information with us. I have been taking my daughter to see a Naturopath and he wants to get my daughter off all the medications she is on, but says we have to get her to where she is normal. He told me to give her the following:

NutraSea +D

HMF Genestra Probiotics (Powder)

SISU Vitamin C (Powder)

SISU Liquid Cal/Mag + Vitamin D

SISU Children's Multi-Vitamin (Powder)

Your post means a lot because although I know each case is different, it always gives me hope.

Take care and please keep posting.

Kind regards,

PrincessD's Mum

6

Dear Stephen,

I found this website and on it there is an article that you might find interesting: http://glutenfreecrossroads.wordpress.com/the-diagnosis/

Take care for now.

Mel x

7

Dear Dancermom,

Thank you. I am glad you found in interesting. I find it still frustrating that PrincessD's doctors still believe that she is not "gluten" intolerant. If the Naturopath did not suggest it and I did not see the difference myself........It is strange to see the situation typed up in "black and white" on that site.

Take care.

PrincessD's Mum

8


Princess D. I have found that my holistic approach to my PSC, and Celiac disease has made me aware of the need to have a healthy mind and spirit, oh poor me! doesnt work, starting with getting your body working better, improves your mind and thought process. It works for me and i hope it works for others.

I learned that PSC is an autoimmune disorder, so it would make sense to make sure your immune system is working properly, your liver having improved function, your body as a whole being looked at as the approach to wellness.

all the best

Charles
PrincessD said:

Dear MAG,

Thank you for sharing all that information with us. I have been taking my daughter to see a Naturopath and he wants to get my daughter off all the medications she is on, but says we have to get her to where she is normal. He told me to give her the following:

NutraSea +D

HMF Genestra Probiotics (Powder)

SISU Vitamin C (Powder)

SISU Liquid Cal/Mag + Vitamin D

SISU Children's Multi-Vitamin (Powder)

Your post means a lot because although I know each case is different, it always gives me hope.

Take care and please keep posting.

Kind regards,

PrincessD's Mum

9

Thanks Stephen
I have seen 3 naturopaths and one put me on a gluten free diet. I followed it religiously along with other recommendations for several months and it made me sicker! My liver numbers went up,I lost weight, which was not good for me, my hair started to fall out and I started bleeding in the GI tract. As it turns out, gluten free products have other stuff in them that I was highly sensitive to. So after thousands of dollars, I dumped the Naturopath and have not looked back.
I was tested for celiac and do not have it. (The only definitive test is a biopsy)

I did switch to Organic grains and just about everything else! That has helped a lot.
The thing is, it may not be gluten, but pesticides/herbicides and other stuff that is in our food that for some people flares everything up (heck, it is killing all our bees! So what is it doing to us?). Things in gluten free, or the high fibre in a gluten free diet flared everything up for me.

My rule is to try something for a month, one at a time. If it helps, keep it, if not, I don’t waste my money on it. And I have tried just about everything on this journey! You name it, I tried it!

Now I am doing great! I have found a routine that works for me… It includes moderate amounts of organic free grains, low sugar (but not sugar free)and many of the supplements mentioned and sulphoraphane (if curious Google it).

I am a believer that the underlying cause of PSC is bacterial because I definitely had some obstructions from adhesions before the disease showed it’s ugly head. The adhesions probably backed things up to the bile duct. Settling the UC or Chrones to avoid this makes sense. But I also think that finding what works is a personal journey.

10

Dear Stephen,

My mom has been on gluten free(SCD) for 3 months now,and it is working VERY WELL for both UC and PSC.(as you know she is symptom free) And now We are waiting for the next 3 months to take a test of her LFT’s to see if there are any changes or not.and before gluten free she suffered from:

diarrhea , stomach pain, gas, bloating and fatigue but now she is like a healthy person without any symptoms!Gluten free really works like a charm!(at least for her)and also she is taking milk thistle supplement. it’s a good supplement for liver.I highly recommend gluten free diet and milk thistle supplement.

Take care and let us know if you start the diet
Kind Regards,

Elina

11

if you can, do not replace gluten containing foods with gluten free imitations. the imitations are usually not that great for us either. it's kinda like going from unfiltered cigarettes to filtered ones...not much better for us. stick to whole foods....fruits, veggies, and meats. eat the most natural sources you can afford.

12

I tried gluten free for 3 months and saw little change in things. I'm sure there are many that avoiding gluten will be helpful for. I hope you find avoiding gluten can be an option for you. Any way in which you can find opportunitites to avoid having PSC symptoms is a winner. Hope it works well for you.

13

Stephen,

I was diagnosed with PSC by Banner Hospital and treated for two years. After I transferred my treatment to Mayo Clinic (the best liver transplant program in the area), one of the Fellows a Mayo thought that I that I was not presenting exactly like PSC and thought that there was a possibility that I had Auto-Immune Pancreatitis (treatable with Prednisone). After about six months on Prednisone I am symptom free (symptom free for nine months since Prednisone) and no more need for ERCPs and stints every 3 months. If your PSC is not behaving exactly like it should, ask you physician to consider Auto-Immune Pancreatitis and Prednisone treatment. Prednisone won't hurt you and it will give you an appetite like a teenage boy. You have nothing to lose by doing this. If Mayo hadn't figured this out, I'd have had the same outcome as PSC without the Prednisone treatment.

14

Prednisone can have some undesirable side effects, especially with long-term use: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601102.html

I am glad it helped you with the pancreatitis, Fountainman; being symptom-free must be a great feeling. Prednisone can be beneficial, but it is not for everyone, and should not be prescribed lightly.

15

It is not like you can run down to the drug store and get some Prednisone over the counter. Your doctor has to prescribe it and monitor your reaction to the drug.

Prednisone side effects vs.ERCPs every three months/withering away/liver transplant/no treatment

It was a no brainer. Even if I didn't have Auto-Immune Pancreatitis, it would have been worth a try. I had a few side effects. But considering how bad I felt before starting the treatment, it wasn't any worse. There are significant risks with having an ERCP every three months. I had to sign a waiver every time I had one done acknowledging that there were risks from the procedure, including death.

When faced with a choice of the status quo or trying a reasoned course of action,I chose the alternative. Even if it had not worked, I would not have regretted taking the limited risks of the side effects of Prednisone.

Doctors are not infallible. The difference in the presentation of PSC and Auto-Immune Pancreatitis is indistinguishable to most physicians. My advise is always question your physician and get second opinions. And don't accept the status quo.

16

I see your point, Fountainman. It sounds like you made a reasonable choice. And I agree about the second opinions, and being your own healthcare advocate.

17

Sorry my information won't be of any help to you.

I've posted about my misdiagnosis before. I'll keep posting because if just one person has my same problem and learns about this Prednisone treatment it will be worth my time.

18

I totally agree. The side effects are astronomical and I can't wait to get my daughter off it. She has been on and off it since she was 3 and I HATE it.

PrincessD's Mum



dancermom said:

Prednisone can have some undesirable side effects, especially with long-term use: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601102.html

I am glad it helped you with the pancreatitis, Fountainman; being symptom-free must be a great feeling. Prednisone can be beneficial, but it is not for everyone, and should not be prescribed lightly.

19

Fountainman, I agree your story is important and could really benefit someone. One way to help get the word out is to revise your profile page and tell your story there. There is an "Edit" button with a pencil icon just above your profile information..

20

Fountainman:

I wonder, do you post about your misdiagnosis in every thread on this board regardless of the topic? It did seem out of place considering the subject of the original post.