A New Way to Look at MC

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

User avatar
tex
Site Admin
Site Admin
Posts: 35071
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Polly wrote:Now, I guess we need to figure out what impairs the FGF19. Any ideas?
No surprises there. It appears that the inhibition of FGF19 may be due to an AI issue:

Antibody-mediated inhibition of fibroblast growth factor 19 results in increased bile acids synthesis and ileal malabsorption of bile acids in cynomolgus monkeys.

How about that?

FGF19 antibodies are available for sale all over the Internet. Apparently they are widely used in oncology research. What I don't know is whether or not their production as an AI issue is also a natural phenomenon that occurs in humans. One would think that might be the case, since it would presumably be a natural defense against cancer.

Love,
Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Polly
Moderator
Moderator
Posts: 5185
Joined: Wed May 25, 2005 3:34 am
Location: Maryland

Post by Polly »

How about that, indeed! Interesting.........

Here is an article with a clear explanation of the issue, although it does not speculate as to why a deficiency of FGF19 occurs in the first place:

http://www3.imperial.ac.uk/newsandevent ... 009-12-5-7

Love,

Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
User avatar
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

would long term use of questran affect the bodies ability to break down and absorb B12?
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Sheila
Rockhopper Penguin
Rockhopper Penguin
Posts: 1150
Joined: Wed May 18, 2011 5:10 am
Location: Palm Beach Gardens, Fl

Post by Sheila »

Thanks for the post, Polly. I'm so glad you posted such a clear explanation. I forwarded your post to my son who is very sick with probable MC and almost certainly celiac. His GI just diagnosed him with IBS and told him the negative blood test proved he did not have celiac. This despite being told that his mother and grandmother both have MC and celiac genes. He is GF and I'm hoping he will get Enterolab testing and then see my GI.

I had my gallbladder removed in 2002 but didn't get sick with MC until 2010. My only issue after gallbladder removal is championship level belching. So feminine. :grin:

Sheila W
To get something you never had, you have to do something you never did.

A person who never made a mistake never tried something new. Einstein
User avatar
tex
Site Admin
Site Admin
Posts: 35071
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

It appears that magnesium, vitamin D, and vitamin A are involved in the regulation of this issue.
Because vitamin D could induce the expression of FGF19 [44], some metabolic effects of vitamin D may be mediated by FGF19.
Low Vitamin D Status Is Associated with Nonalcoholic Fatty Liver Disease Independent of Visceral Obesity in Korean Adults

Here is reference 44 from the above quote:
Although it is well established that bile acids are essential for the absorption of lipid-soluble vitamins, it is not known whether lipid-soluble vitamins affect bile acid biosynthesis. In this study, we demonstrate that vitamins A and D regulate bile acid synthesis by overlapping but distinct mechanisms. As expected, the action of vitamin D on bile acid homeostasis occurs through activation of VDR.
Our finding that vitamin A could repress Cyp7a1 expression by inducing bile acid feedback regulatory genes in both the liver and intestine suggested that vitamin A analogs might be useful therapeutically in pathological conditions in which feedback repression of bile acid synthesis is interrupted. One such condition is bile acid malabsorption, which is characterized by decreased intestinal bile acid reabsorption, resulting in low FGF19 levels (human ortholog of FGF15) and excessive bile acid synthesis by the liver (30). The effects of bile acid malabsorption on expression of bile acid feedback regulatory genes can be mimicked by administering the bile acid-binding resin, cholestyramine. As expected, cholestyramine treatment of wild-type mice dramatically decreased Fgf15 and Shp expression and increased Cyp7a1 expression (Fig. 4). Amazingly, vitamin A completely rescued Fgf15 and Shp expression and reversed the derepression of Cyp7a1 caused by interrupted bile acid reabsorption in cholestyramine-treated animals (Fig. 4). Consistent with our previous results, in the absence of bile acids, vitamin D modestly induced Fgf15 but did not change Shp or Cyp7a1 expression (Fig. 4). These data highlight the potential of vitamin A analogs to correct disrupted feedback repression of bile acid biosynthesis.
Regulation of Bile Acid Synthesis by Fat-soluble Vitamins A and D

And magnesium is important in hormone production and regulation:
6) Magnesium makes hormones. Magnesium is involved in the manufacture of steroid hormones such as progesterone, estrogen and testosterone. Magnesium has been shown to reduce hot flashes by 50%.

7) Magnesium activates vitamin D. Without enough magnesium, vitamin D cannot do its job . Conversely, too much vitamin D supplementation can cause magnesium deficiency.
8 Ways in which Magnesium rescues hormones

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
tex
Site Admin
Site Admin
Posts: 35071
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Gabes wrote:would long term use of questran affect the bodies ability to break down and absorb B12?
Yes, that's definitely a long-term risk because long term use will cause a folate deficiency, and B-12 cannot be effectively utilized if folic acid is deficient. Medications such as PPIs and H2 blockers can also cause a B-12 deficiency.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

mmmm we knew about magnesium activating Vit D (it was that very fact that started me on the magnesium journey!)

Very interesting, so magnesium deficiency contributes to the issue

I am just thinking about the methylation cycle / balanced digestion / digestion protein and fats / getting the amino acids etc
along the same lines that totally blocking histamine is not a good long term option I am concerned that long term bile sequestrants may well have an impact on Vit A, Vit E, B12 in the long term..
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
User avatar
tex
Site Admin
Site Admin
Posts: 35071
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Gabes,

Those are probably valid concerns. Bile acid sequestrants may deplete vitamin A, vitamin B12, vitamin D, vitamin E, vitamin K, beta-carotene, calcium, magnesium, iron, zinc, and folic acid.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Kari
Rockhopper Penguin
Rockhopper Penguin
Posts: 1346
Joined: Sun Sep 05, 2010 4:26 pm
Location: Colorado

Post by Kari »

Polly,

Thanks for sharing your latest "discovery". I'm so sorry you've suffered a relapse and was wondering if you have any insight about what triggered the flare? It seems no matter how careful we are, something gets us :(.

It's comforting to know there is another tool in our MC toolbox that can help us get passed the inevitable obstacles.

Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Nancy
Adélie Penguin
Adélie Penguin
Posts: 131
Joined: Tue Jun 07, 2011 11:35 am

Post by Nancy »

The Questran did nothing for me. I am still on budesonide, 3mg. every other day or every day if under a lot of stress. Seems to be the only thing that works for me.
User avatar
dfpowell
Gentoo Penguin
Gentoo Penguin
Posts: 492
Joined: Wed Apr 03, 2013 9:04 am
Location: Lakeville, Minnesota

Post by dfpowell »

Nancy,

Good to know, thanks for your feedback, I'm in the beginning phase of evaluating its effectiveness.

How long have you been on budesonide?

Thanks,
Donna

Diagnosed with CC August 2011
Nancy
Adélie Penguin
Adélie Penguin
Posts: 131
Joined: Tue Jun 07, 2011 11:35 am

Post by Nancy »

I've been on budesonide for 20 months.
User avatar
DebE13
Rockhopper Penguin
Rockhopper Penguin
Posts: 1657
Joined: Sun Nov 27, 2011 5:32 am
Location: Wisconsin

Post by DebE13 »

I tried it when I was first dx and it did nothing. That was before I knew anything about diet modifications. I wonder if it would be worth a second try now that it's been years since I've been careful with what I eat. ???
I agree it's tolerable- made me think of drinking a glass of sand but if it actually would help then it would be worth it! It did cause mild stomach aches but maybe it was due to the soy, dairy, etc. I was eating at the time.

My son took it for non MC reasons (PSC and puritis)and has an awful time with the texture and it caused nasty stomach pains for him. He can't drink Sunny D to this day because of the association. It stopped being effective and combined with the dread of taking it twice a day he switched to rifampin for the itching. Some if it may have been a mind thing too which made it worse but there were times he would actually throw up shortly after taking it. That could also be tied into his liver disease too.

I have to make my semi annual appointment next week so I think it may be worth another try. Do you know if they will let me take it if I currently take 3mg of entocort once a week? If I give that dose up the rumbles return along with the likelihood of nocturnal D. How woukd the dosing work with thyroid meds? I take those at 7AM and my iron, magnesium, B12 with dinner.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
User avatar
tex
Site Admin
Site Admin
Posts: 35071
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Deb,

You would need to take Questran at least 4 hours apart from most other medications (especially your thyroid meds) due to effects on absorption rates. That's the only restriction I'm aware of regarding the medications you are taking.

Has your DHEA level ever been checked? Based on your refractive MC treatment issues, fatigue, etc., and the fact that a trial exists where DHEA was shown to successfully resolve refractive UC, I wonder if treatment with supplemental DHEA might be beneficial in your case. DHEA supplement is available OTC.

http://www.webmd.com/diet/dhea-supplements

http://www.nlm.nih.gov/medlineplus/drug ... l/331.html

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

Hi Deb,

I agree with Tex, consider getting your DHEA tested. This is done by a blood draw. DHEA supplementation plus iron supplementation is what got me out of the endless fatigue that I was mired in and getting worse.

In my opinion MCers should investigate low iron first and supplement accordingly. For me it took both iron and DHEA to resolve the endless mindnumbing fatigue.

If I remember correctly I joined the forum in Oct 2011. I started Entocort Sept 1, 2011. My last Entocort was Jan 15, 2012. GI wise I had solid stool all through 2012. WEIRDLY I HAD FATIGUE WHILE ON ENTOCORT BUT MY FATIGUE GOT WORSE AS 2012 WENT ON. I started iron Oct 1 2012. Six weeks later I was still in rough shape, tested for DHEA and it was very low. Started supplementing with DHEA. The whole situation was counter intuitive....why was I getting worse when I'd been off Entocort for 10 months.

I just saw where budesonide use is linked to low DHEA. http://umm.edu/health/medical/altmed/su ... drosterone

I'm not sure if that ties out to Entocort.

Brandy
Post Reply

Return to “Main Message Board”