Resistant Starch?

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Scott007
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Date Joined Apr 2017
Total Posts : 78
   Posted 6/8/2017 10:50 AM (GMT -7)   
Some of you folks might remember me. My original post on resistant starch was deleted.

I have not visited this site in a while and thought it was worth giving an update. I still take 2/3 cup potato starch dissolved in water everyday. I have now been completely off Enbrel for more than 8 months, and do not take any other drugs at all. I now run about 2 miles at least 3 times per week. I have trimmed down by about 10 pounds. I have a friend with ulcerative colitis that started the potato starch about 4 months ago at my suggestion. He had been taking 100 mg azathioprine every day. He is now down to 50 mg three times per week and doing much better.

Best wishes to all of you!

Post Edited (Scott007) : 6/9/2017 11:48:29 PM (GMT-6)


Bstrong
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Date Joined Jul 2010
Total Posts : 147
   Posted 6/9/2017 3:43 PM (GMT -7)   
Woow I am impressed thank you for posting. So far the diet works for me and I am in remission 1.5 year now ( I was on Humira for 6 years now only Plaquenil 200 mg / day) but good to know that there are other options for us. .

Just out if curiosity how does your diet look like?

Good luck with all and please keep us posted from time to time!

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/9/2017 10:39 PM (GMT -7)   
More or less, I simply eat a balanced diet, but I am mindful of the portion size. There are a couple items of significance. First, I used to drink water only when I was thirsty. Now, I start my day with a cup of water as soon as I wake up, and drink about 1 liter throughout the day. I think that we have a tendency to misinterpret thirst for hunger. I find that I eat less now. Second, I had maintained a gluten-free diet for a couple years prior to the potato starch, but now I eat whole grain bread almost every day without any problems. I really enjoy eating pizza again! Third, I try to minimize sugar/fructose intake. This is a hard one for me because I have a "sweet tooth". Sugar itself is a disaccharide of glucose and fructose. Fructose is a real problem for the body if you consume too much. Unlike glucose, it is not stored by the muscles and the liver for fuel. Instead, the liver converts it to fat, which contributes greatly to the obesity epidemic. So, I avoid fruit juice drinks which are too high in fructose, and just eat the fruit itself. The only real restriction I have placed on my diet is red meat. It does not digest well for me. I can get away with a hamburger once a month, but not more than that. Overall, the most significant change in my diet was the addition of 2/3 cup potato starch every day. Some think that is a lot, but it is really nothing more that one large potato, and many eat that as part of their dinner and think nothing of it. [I started the potato starch in September 2015.]

Post Edited (Scott007) : 6/9/2017 11:46:01 PM (GMT-6)


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1877
   Posted 6/10/2017 12:31 PM (GMT -7)   
Scott, do you think the resistant starch healed you leaky gut and then helped with the RA? That's awesome!
Sjogrens syndrome 2/15 via lip biopsy: Seronegative RA , fibromyalgia
colitis-resection 11/10, hashimoto's thyroiditis, morphea, GERD
Meds: plaquenil, synthroid, Januvia, nexium, restasis, estrogen patch, prometrium, VSL #3, evening primrose oil, Omega 3 supplement-Maxi Tears.

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/10/2017 2:54 PM (GMT -7)   
Hi Jeanneac, Well, I was never diagnosed with or tested for "leaky gut". I do not like the term "leaky gut". I think that the premise is wrong. Before I explain further, let me provide some background. I have a PhD in Organic Chemistry and worked in the pharmaceutical industry for 23 years. I worked in drug discovery in the therapeutic areas of asthma, rheumatoid arthritis, cancer, anticoagulants, congestive heart failure, and atrial fibrillation.

It is widely believed that certain food substances (e.g. gluten) are inflammatory to the gut which leads to/causes "leaky gut". I would argue that it is the opposite: sensitivity to certain food substances is the result of an "unhealthy" gut. Although the gut may very well be "leaky", this term does not accurately describe the condition. Why and how does the gut become unhealthy? I wrote an earlier post entitled "Fuels & Starvation". The post was not advocating starvation. There were 2 references in this post. Studies on starvation were done to identify "preferred" fuels for each organ in the body and fuels which are used as "alternate" sources. Muscles are interesting because they prefer glucose under some conditions and prefer fats under other conditions. Cardiac muscle has one major difference with skeletal muscle - cardiac muscle has no fuel storage. The colon, however, is unique - it is the only organ in the body which does not use a fuel that is derived from foods that are digested and processed by human metabolic machinery. The colon uses "butyrate" as its preferred fuel source which is generated by the metabolic machinery of bacteria - a process called fermentation. Humans lack the enzyme to digest "resistant starch" (RS) and cannot use it as a food source. Bacteria, on the other hand, ferment RS in the gut and generate butyrate as a waste product which is then transported into the colonic epithelium. If the amount of RS in your diet is insufficient to "feed" the one trillion bacteria in the gut, your colon essentially starves. So, instead of "leaky gut", I prefer the term "butyrate deprivation syndrome". I hope that answers your question.

BadDay
Forum Moderator


Date Joined Jan 2011
Total Posts : 1042
   Posted 6/11/2017 10:17 PM (GMT -7)   
there was a program on SBS recently titled "Gut Feeling
Season 2017 Episode 17 "
this talked about the connection between the bacteria in the gut and certain diseases
it can be a very interesting area as an ex nurse myself I tend to sway toward traditional medicine But as my years of ill health go on and I get more and more ill effects from talking different medicines I am being more open to alternative sources as Really before traditional Doctors they treated people for 1000's of years with herbs ect and most current medications were derived from natural till Big pharm synthesised and patented them
Yes Many medications Work and Save Lives and it would be Foolish to turn from them without due care and consideration, but it is always good to discuss different or complimentary treatments
My Husband has a lot of tummy troubles so I will get him to look into this as you say we tend to down play the importance of Water I have had hubby drink more water and it has helped in a short time he has been doing it
FORUM MODERATOR Rheumatoid Arthritis for 30Yrs. Asthma,Fibromyalgia,Osteoperosis,Cervical Spondalosos,Degenerative Disc Disese,Disc Bulges, Diabetes,Heart SVT & AF, Sleep apnoea,Nocturnal Respiratory Failure,Panic Attacks,Anxiety
on; Methotrexate , Arava , Endone, Targin 20mg (oxycontin) , Prednisone, Metforman(Diabex) , Tambocor. Oxygen & Cpap, Prolia Injection ,Lyrica

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/12/2017 12:39 AM (GMT -7)   
Hi BadDay - I look at the footer in your post that lists your conditions and drugs. I understand why you have chosen "Bad Day" as your name on this forum! My mother had rheumatoid arthritis, but that was not the cause of her death 10 years ago. She died from the side effects of methotrexate/prednisone.

Have you considered that some of these conditions may have the same root cause? The doctors look at you and see a dozen different conditions. From 23 years of working as a scientist in the pharmaceutical industry, I look at your list and see mainly "one condition" - INFLAMMATION! Inflammation is the common thread between many of your conditions, which is primarily an immune response. The highest level of immune system activity occurs around the gut. Have you considered trying potato starch? Given your preference for traditional medicine, you seem well suited for it.

Post Edited (Scott007) : 6/12/2017 1:46:38 AM (GMT-6)


BadDay
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Date Joined Jan 2011
Total Posts : 1042
   Posted 6/13/2017 6:11 AM (GMT -7)   
Hi Scott the name BadDay was typically when I found this forum I was having a terrible bad day and decided to join and couldn't think of a user name or those I thought of were taken then I thought - what a bad day idea and there it was
when you say potato starch do you mean you eat potatoes or is there a product from health stores that is potato starch ?
I would Love to cut some of my medications as I know many of my "illnesses" are if not directly at least in some way from medications
I can't stop the prednisone as been on too high doses for too long so all I can do is try to keep it low
and I looked at my drug cupboard when filling my weeks worth of pills and wondered which ones I could safely cut out and where to start. then I buckle and just refill it as usual.
FORUM MODERATOR Rheumatoid Arthritis for 30Yrs. Asthma,Fibromyalgia,Osteoperosis,Cervical Spondalosos,Degenerative Disc Disese,Disc Bulges, Diabetes,Heart SVT & AF, Sleep apnoea,Nocturnal Respiratory Failure,Panic Attacks,Anxiety
on; Methotrexate , Arava , Endone, Targin 20mg (oxycontin) , Prednisone, Metforman(Diabex) , Tambocor. Oxygen & Cpap, Prolia Injection ,Lyrica

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/13/2017 8:48 AM (GMT -7)   
Ok, I understand the username smile All of us here with an autoimmune disorder have had too many of those days! Potato starch is found in the baking section of almost every supermarket. One of the more common brands is Bob's Red Mill Unmodified Potato Starch (NOT potato flour), but any brand will suffice. There are a few items that are critical: 1) consume enough potato starch to feed the bacteria over the entire length of the colon (I estimate about 2/3 cup), 2) consume the 2/3 cup every day (I suspend it in water and drink it), and 3) drink a minimum of 1 liter of water throughout the day. Scientific studies have shown that any potato starch that is not consumed by the bacteria is simply excreted in the feces. In the beginning, you may experience quite a bit of gas - that will decrease after a few weeks but never go away completely. Bacterial fermentation produces some gas and is completely normal.

Since you are an ex-nurse, then you understand the pH (i.e., acidity and basicity). Another change that occurs when you take potato starch is the elimination of many of the "bad bacteria" in the colon. This happens because most bad bacteria are gram-negative bacteria, which require a slightly basic environment to survive. Each day that you consume potato starch, the pH of the colon shifts to a slightly acidic environment due the short-chain fatty acids produced in bacterial fermentation (butyric acid, propionic acid, and acetic acid). During this period, you may also experience some loose stools. That will also pass after a few weeks.

I am very glad that you are an ex-nurse because you have a much better understanding of what I am talking about. This brings me to your comment about prednisone. Prednisone and methotrexate were the cause of my mother's death, not RA. You must eventually get off of this. I know drugs very well - it is my life's work as a scientist in the pharmaceutical industry. When you take prednisone over a period of time, the body stops producing its natural corticosteroid, which is responsible for such things as maintaining the sinus rhythm of the heart. One must taper the dose, rather than abruptly stopping it.

Prednisone is a drug to reduce inflammation. The best natural anti-inflammatory agent is "butyrate", generated by bacterial fermentation in your colon. I am guessing from all of your health conditions that internally your body is in a highly inflamed state from a hyperactive immune response in and around your colon. What is your CRP level measured in blood tests?

I wish you well. With regard to your last comment that you "buckle and just refill" your meds, I would advise not to give up. Start the potato starch ASAP. You will not be able to cut the medicines right away, but in a month or two, you may be able to start tapering back. This should be based on 2 things: 1) how you feel, and 2) specific markers in blood tests that verify an improving condition.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 6/13/2017 11:20 AM (GMT -7)   
Hi Scott:

Sorry that I missed your first post that was deleted. I find this very interesting. I heard of Resistant Potato Starch last year on another site. The man who mentioned it was trustworthy from what I heard. He however was telling people about it to help with Diabetes...if I remember correctly Type 2. I've had Type 1 since I was 3, so I figured it wouldn't work for me. I'm doing okay with it anyways. It's the severe RA that's a real pain. smile It has quieted down for about 4 days again since our weather has been more stable...actually HOT.
Anyways, I would sure try the RPS if it helped my RA.

Last September 2016, I ended up in the ER because of extreme physical pain, fever, Pneumonia, Sepsis (CRP 150) because I had tried the Xeljanz from May 2016 until the ER visit in Sept. It did work for 3 months. None of the other biologics have worked for me otherwise. I have been on Pred for about 11 years but mainly a lower dose. My Rheumy said no more biologics for me. I'm glad that I tried them though since there is a chance that a new drug will work. I've tried many things through the years or deleting things like dairy, other foods, etc. I've always drank lots of water since I was a kid and I was on low carb before, now moderate when I get some appetite. MTX kinda kills that.

Thanks again for the RPS reminder.

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/13/2017 2:11 PM (GMT -7)   
Hi msOuchie,

I have a question: were you told that Xeljanz is a biologic? It is a kinase inhibitor, not a biologic. The biologics are Enbrel, Humira, and Remicade, and all biologics are administered by injection. I worked on kinase inhibitors when I was on an anticancer program. I warned management that kinase inhibitors would be very dangerous drugs with many side effects. They did not listen. Unfortunately, I learned that working in the pharmaceutical industry was more politics than science. Management just wants to get drugs into development so that they get their big bonuses at the end of the year.

Anyway, you may be correct that potato starch may not work for type 1 diabetes. However, I think that it would help tremendously with the rheumatoid arthritis. I did not even know that the CRP level could get as high as 150! The posts above give the details for the potato starch. Just make sure to take 2/3 cup and take it every day. The human body maintains a very precise homeostatic balance (salt concentration, pH, etc.). In an autoimmune disorder, that homeostatic balance has been shifted to a dysfunctional state. It takes time to shift back to "normal" and recalibrate. It was about 3 - 4 months of potato starch every day before I detected improvement, but that improvement was significant. I suspect that the changes that occur to the colon in an autoimmune disease are on the molecular level in the colonic cells and not visible in a colonoscopy.

Post Edited (Scott007) : 6/13/2017 3:19:30 PM (GMT-6)


msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 6/15/2017 1:38 AM (GMT -7)   
Yes, I was told it was a biologic, from some people on this forum a ways back. I believe I wrote a post in the same thread about it not being a biologic but as usual they didn't respond, so I don't know if they looked it up or believed me or not. I called it a biologic to appease them (if they are still around) ;) . I know I shouldn't. I always look up the info on medications that I may be taking. It definitely did not say that it was a biologic. Yes, it's always the almighty dollar isn't it?

I'm surprised that you didn't see a CRP as high as 150.0. Evidently, It gets worse:

http://www.healingwell.com/community/default.aspx?f=17&m=2390034

I was looking at my Sept. hospital discharge papers and all of the tests and results were present also. My CRP was 104.7 the day I arrived and it peaked at 150.0 the next day. It was 80.0 the day I left. Well, I'm still in some pain even though it's summer, so I will try the RPS. I would still know if it was working. Thanks for the directions. That's helpful. What if a person misses the glass a day however? When I was young, I was on fewer drugs than now. I swore that I would not take many drugs. Surprise! :/ Without meds people with severe RA would be crippled in short order and RA can kill a person to. So no choice really. We do enjoy being able to get out of bed by ourselves without severe pain and walking, etc.

Post Edited (msOuchie) : 6/15/2017 2:41:47 AM (GMT-6)


Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/15/2017 3:32 AM (GMT -7)   
Hi msOuchie,

I find it rather disturbing that there are some on this forum that would state that Xeljanz is a "biologic". The fact that they never responded to you when you questioned their statement suggests deliberate deception. This brings up a very important item - always read the "drug product sheet" that comes in the package of every prescription drug. The drug product sheet is considered the most important document issued by the FDA after a drug is approved. It is provided for the benefit of the consumer, yet most people throw it in the trash without even reading it. I find it easier to read it online - just search "[drug name] drug product sheet". Here is the link for Xeljanz (it carries a "black box" warning which is the most severe warning issued by the FDA): http://labeling.pfizer.com/ShowLabeling.aspx?id=959 There are other links for the PDF as well.

My CRP was not measured until I had been on Enbrel for a few months. It has never been greater than 5. Before Enbrel, I had severe RA but it was misdiagnosed for almost 2 years. I can only guess that my CRP was quite high and did not know it.

Nothing bad will happen if you miss a day of RPS. However, if you miss too many days, you will not get the benefit of the RPS. It takes time for the colon to repair itself. Missing a day just delays that repair. I have taken RPS for almost 2 years now. Like anything else (e.g. flossing your teeth), if you do it everyday, it becomes habit. I created a Google alert for "butyrate" to get the most up-to-date info in the news media (this alert does not pick up scientific publications, which I search independently). This article just came out last week:
"Butyrate, dietary fiber offer variety of health benefits"
http://www.bonnercountydailybee.com/columns/20170607/butyrate_dietary_fiber_offer_variety_of_health_benefits

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 6/15/2017 6:08 PM (GMT -7)   
I am still taking the starch but have cut the amount. I had tremendous gas as a result of 2/3 cup that even after a month did not recede. Im gassy to begin with so this was seriously at ridiculous levels and was very hard to control. I also had loose stool the entire time with bouts of diarrhea. I cut the amount by half and took it for another month that way. I am currently taking about 2 TBL spoons and not every day. I just can not handle the effect it has on my bowels at those levels.

Now, I have been doing better. In fact my tests are looking much better as well. I am still having bad days but even they are much better. I have cut my pain meds by half. So, there very well may be something to this. Time will tell. I have had this disease for 25 years now so I don't expect I will be having any speedy recoveries at any rate.

Xaljanz is some nasty stuff. I was given it by my Doctor, told it was another biologic (in pill form) and after taking it for 3 days my gut swelled badly and was super painful. I stopped it right away. I know others have had good results from it however so take it for what it's worth.

Interesting that you mentioned starvation diets Scott. I live down the road from a place notoriously known as Starvation Heights. Look it up online, it has quite the gruesome past. On another note, I fast on occasion for reasons of faith but back in the days when I was looking at diets heavily I fasted for 3 days and on the 3rd day my inflammation was noticeably improved. I was in the middle of a serious flare as well so it was pretty amazing. Sadly, when I began eating even greens the swelling and inflammation returned.

I am very skeptical about the whole leaky gut phenomena. I have tried paleo and other diets and had no results from them whatsoever. Even over long periods I saw no relief from my symptoms and my wife as well started chiding me about paleo because it is very hard to not fudge when you have a family.

Thanks for starting up another thread, it will be good to be able to check in from time to time and see how others are doing. Oh and I did speak with my Rheumy about it as well and she was all for it. smile

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/16/2017 4:14 AM (GMT -7)   
Hi Don - Great to hear that you improved with the potato starch! The gas and loose stools varies from person to person. It lasted about 3 weeks for me. I have a friend with ulcerative colitis and he did not experience either. He started the treatment 4 months ago and has improved so much that he thinks that he will be completely off Azathioprine in another 4 months!

Have you ever been tested for faecal calprotectin? If not, I suggest that you get tested for it. Actually, everyone with an autoimmune disorder should be tested for faecal calprotectin. It is also a biomarker for colorectal cancer. Here is a summary of calprotectin in RA (full article requires a subscription):
https://www.ncbi.nlm.nih.gov/pubmed/27895095

I don't know how Xeljanz ever managed to get approved by the FDA. I saw what these kinase inhibitors did to rats when I worked in pharma, yet management pushed forward with these projects. Death was the most common "side effect" with the rats. I suspect some skullduggery on the part of Pfizer to get this drug approved. Was it the doctor that told you that it was a biologic?

With regard to starvation, it has been shown with rats that periods of fasting increases longevity. In contrast, the lives of obese rats are significantly shortened.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 6/18/2017 3:27 AM (GMT -7)   
Hey Scott:

I do not recall who they were but I do not think that they said it deliberately. I figured that they honestly did not know and perhaps they did not like being corrected. I make errors too and I do not mind being corrected. They probably took the info to heart especially after looking it up to make sure. No biggie that way. If it had been said deliberately, then I would agree with you.

Or perhaps they do not like me. That's no biggie to me either. I know the experiences that I have gone through good and bad and I'm doing all that I can for myself that helps me. I know that I've helped many others through the years on many sites with Type 1 D and severe RA/RD with my experiences and other info that I've researched for them. With links when needed. Like everyone, I'm still learning new things like from you, as one example, that may work and what experiences others go through. Like most, I'm on other sites to learn and to share also.

Through the many years, my Rheumy was happy that I wanted to try the older drugs(since that's all there was) and some worked for me much better than the new ones that came out, so that I could hopefully get myself into better condition. If I "rarely" didn't want to try one, then he was okay with my decision since it's my life.

What bugs me is when someone tells everyone that they've been on such and such a drug for "this" amount of time and it will work for other RA patients too. This is not necessarily true. As so many people have stated, we are all different and just because a drug works for some people, that certainly doesn't mean it will work for everyone. Many of us have been there, done that, so we know. They should add the word "may" work for you(and others) also. Plus, all drugs do stop working for people eventually. Some people are luckier than others that the meds work for them in the first place and/or for a longer span than others. Some of us have not been that lucky, so we have to take Pred. If we didn't need it, we wouldn't take it. Duh!

I do agree with you. Your CRP was probably higher somewhere in those first 2 years. Gee, the Enbrel worked quicker on you than on some other RA sufferers. That certainly happens also, as you know. Good for you with the 5. That is amazing to me. smile

Oh, that's good to hear that we are able to miss a day of RPS, with no consequence. Thanks for letting me know. Like others, I occasionally forget one of my meds OR I'll test my blood sugar, then I'll forget to take a shot because I got distracted by something else. Thankfully, not too often.

I'm pooped, so I'll read the link tomorrow. Thanks for that also. It should be interesting.
Have a great day Scott!

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/19/2017 1:13 AM (GMT -7)   
Hi msOuchie,

You bring up a very good point that no medical doctor has ever been able to answer definitively - why do some RA drugs work for some but not for others, and why do the drugs stop working eventually? I do not know the answer to either and can only speculate.

What I can say is that all drugs for autoimmune disorders either 1) suppress the immune system directly or 2) suppress the inflammatory response of the immune system. The methotrexate/prednisone combination therapy is a classic combination of 1) and 2).

Drugs like methotrexate and azathioprine (for ulcerative colitis) are like nuclear warheads aimed at obliterating the immune system. Many of the side effects are the result of inhibiting critical biological processes outside of the immune system as well. The biologics are like snipers and take out a very specific chemical mediator in the immune response. In my opinion, the biologics represent one of the greatest achievements of modern medicine and scientific technology.

Virtually all drugs on the market for any medical condition treat "symptoms", not the root cause. Autoimmunity is clearly a response to some other dysfunction in the body. My analysis, and that of some other very smart scientists, have identified the colon as the source of the dysfunction. In my case, I just happen to be both researcher and patient. Potato starch is not a drug - it is a dietary supplement. The industrialization of agriculture over the last century has stripped out resistant starch from much of the food we eat. Everything is processed and cooked. There was a time when we ate more of our foods in their raw state. So, even if we eat a "balanced" diet, we still do not get enough resistant starch.

I recently found a very good lecture by a woman named Dr. Claire Fraser entitled "The Human Gut Microbiome in Health and Disease" on YouTube: https://www.youtube.com/watch?v=YciV60j-PXQ

Loose stools from potato starch may be an indication of a dysbiotic colon in which the "bad bacteria" are flourishing. In cases where loose stools last more than a few weeks, one can simultaneously supplement with 1) a product called "Molkosan" to restore the colon to its normal and healthy pH, and 2) probiotics to boost the population of beneficial bacteria.

Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 147
   Posted 6/20/2017 1:51 PM (GMT -7)   
Hi Scott007,

I read all your posts they are very interesting. Even that I am in remission from RA I realize it is "remission" I didn't cure from RA but luckily this state of remission remains and hopefully will remain for long. I deaply believe in diets and try to read and learn about them as much I can. Thank you for answering my question about your diet! As the idea of eating / drinking potato starch sounds very interesting and it looks like really makes sense I learned through the years that the starch is not very good for people with RA. Do you think it is because all the changes which happened through the years that starch in all the products is no longer "the starch" from hundreds years ago ? Same as with gluten? The resistant starch doesn't cause the inflamation? I don't know much about starches I learn a little bit now. Thank you.

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/21/2017 4:37 AM (GMT -7)   
Hi Bstrong,

Thank you for your kind words! Half of my mother's life was spent in pain and suffering from rheumatoid arthritis. It was very hard on the family, especially my father. Then I get diagnosed with RA about 5 years before she died.

The traditional drug therapies for RA (i.e., methotrexate/prednisone), as well as those for other autoimmune disorders, are a love-hate relationship for many. While they provide some relief from the symptoms, the side effects in the long term are devastating. Ultimately, my mother died, not from RA, but from the side effects of long term prednisone therapy (diabetes, kidney failure, obesity, limb amputation). It was very fortunate for me that Enbrel had just been approved for RA one year before my diagnosis. I was also very fortunate to have a very progressive and "scientific" rheumatologist. I could tell that he enjoyed the regular check-ups with me because he could talk about the science of RA on a highly technical level, and as a medicinal chemist in pharmaceutical industry, I understood.

Enbrel worked very well for me, and I never experienced any side effects other than an occasional injection-site swelling. However, I was never comfortable with the idea that I would be dependent on the healthcare system for such an expensive drug for the rest of my life. about 3 years ago, something happened that would dramatically change the course of my treatment. I started getting periodic bouts of blood in my stools. I feared the worst - colorectal cancer! I had a colonoscopy and a polyp was removed. Fortunately it was benign. The doctor stamped my colon examination with a "good bill of health" and stated that the blood was "probably" due to internal hemorrhoids. I knew then that her analysis was pure "speculation" and that I was on my own to determine the cause.

I studied the chemistry of the colon and read articles in scientific journals of immunology, cancer, and cardiovascular disease. The one clear commonality between all of these conditions involving cancer, autoimmune disorders, and cardiovascular disease was an underlying "inflammation". The plaque formations in the arteries leading to high blood pressure and atherosclerosis result from an inflammatory response of the immune system. But what was the source of the immune response? Everything pointed to the colon. In contrast to the brain which only uses glucose as a fuel, the colon almost exclusively uses butyrate as fuel. The only source of butyrate comes from bacterial fermentation and bacteria feed primarily on resistant starch.

I now realize that my colon had been deprived of butyrate for almost my entire life, resulting in significant damage, but this damage occurred on the molecular level and not visible by a colonoscopy exam. After a month of potato starch, there was no more blood in my stools. After about 3 - 4 months, something unexpected happened. The RA pain had been the reminder to give an Enbrel injections and that pain was like clockwork every 7 days. Now, I had no pain for 9 - 10 days! After a year of 2/3 cup potato starch every day, I did not even need the Enbrel injections anymore.

Starch is a general term for "carbohydrate" and some are digestible and some are "resistant" to digestion. Carbohydrates are polymers of glucose, but the linkage between these glucose units determines whether or not it is digestible or resistant. The bacteria in the colon feed primarily on the resistant starch. Raw potatoes (i.e., potato starch) are resistant starch, but once they are cooked, they become "digestible" starch.

My whole family (wife, 10-year old son, and 5-year-old daughter) takes potato starch every day. They have never been diagnosed with anything. My wife used to have some pain in her knee joints, which may be the beginning stages of osteoarthritis since she is almost 50 years old now, but that has gone away. We all have regular bowel movements and all produce gas. The interesting part is that our gas is "odorless" now. Before taking potato starch, the gas had the typical "unpleasant" odor. I interpret "odorless" gas as one sign of a "healthy" colon and foul-smelling gas as a sign of dysbiosis in the colon.

So, if you fix your colon, you fix the inflammation that is the root cause of so many medical health conditions. How healthy would the brain be if we starved it of glucose? Yet, we think nothing of starving our colon of butyrate for our entire lives!

The colon is a barrier separating the symbiotic bacteria providing butyrate fuel on the inside and the immune system on the outside. But when that barrier is compromised by not getting the "preferred" fuel, it becomes porous (i.e., leaky). The bacteria and/or their cellular components can pass to the outside and trigger an immune response. Neutrophils (one of the immune system's warriors) also infiltrate the colon to attack the threat. Calprotectin is one of the immune system's weapons. If detected in the feces, it is an indication of colonic inflammation. You can tell your doctor that you would like to be tested for fecal calprotectin.

Post Edited (Scott007) : 6/21/2017 6:46:46 AM (GMT-6)


Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 147
   Posted 6/21/2017 11:00 AM (GMT -7)   
Thank you for the explanation and sharing your story. I totally understand you, my Grandmother suffered from gout and RA. I got sick when I was 33 and was next in the family;later on I learned that my uncle cousins have some symptoms but I don't know the details. Before I got sick I had GI problems for around 10 years, constipation, hemorrhoids, bloating, gases, blood in the stool. Then it started with elbows pain, knees, feet, fingers toes and unbearable pain throughout the whole body. I was on Prednisone couple times, Plaquenil and after a Year of experimenting with different medications my rheumatologist put me on Humira. I felt great but didn't stop my research as I believed that my gut problems led to RA. My GI suggested colonoscopy as my symptoms were similar to Crohn so he wanted make sure that I wasn't miss diagnosed. Everything was fine and he suggested higher intake of vegetables and fruits plus whole grain diet.

All my symptoms stopped on the Humira GI symptoms too as that medication took care of tge inflamation through my whole body. But my goal was to stop RA meds one day, I hated to inject it into my body every other week. In 2015 as 39 year old I had a stroke. When I was going to ER that day I didn't know what's going on but the only thing I was thinking- what that Humira did to me. I had vertebrae disection - where one of the arheries was squeezed restricting blood flow to the brain ( the effect of sudden head and neck movement to the left side) rare case of ischemic stroke. Nobody ever confirmed Humira had anything to do with that and after some time I started to believe that there is no connection. In the hospital they discovered blood thinning disorder - phospholipid syndrome which is connected to RA and actually contributed to my stroke.

I am in therapy for 2nd year and on disability, 7 months before the stroke I started Paleo diet I think that contributed to my remission, I am thankful that I don't need to deal with after stroke problems and RA. Scared that my RA can return I constantly look for answers. I may try resistant starch once I am done with cadida diet. My GI problems came back with Candida overgrowth so dealing with that now.

Thank you!
RA - diagnosed July 2010 until December 2015

CURRENTLY IN TOTAL REMISSION

Plaquenil, Vit D 700 IU, Vit B complex, Vit C

Warfarin, Baclofen

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/24/2017 2:03 AM (GMT -7)   
Hi Bstrong,

I don't know much about Candida overgrowth. I didn't even know that there was a special diet for this! Is it a diet that was recommended by the doctor? How do they "monitor" this and evaluate the effectiveness of the diet.

I know that one of the treatments for cholera is potato starch. I wonder if potato starch would be good for treatment of Candida as well.

Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 147
   Posted 6/25/2017 12:34 PM (GMT -7)   
Hi Scott007,

Yes There is something like Candida diet basicaly you are avoiding sugar, yeast, anything what can hold mold- deli products, peanuts, aged cheese, fermented food, mushrooms etc. I have the whole list, avoiding these products will starve the Candida. Everybody should have some amount of Candida bacteria in the gut but if you have too much it's not good and actually Candida overgrowth had been linked to autoimmune deseases like RA, Hashimoto etc.. that's why one of my post was the question if anybody on the forum was ever diagnosed with Candida overgrowth. After being in the hospital for a month I lost some weight and stopped Paleo for a while. I couldn't cook myself so most of the food was ordered in the store and not always fresh + medications and my sweet tooth that's how I probably got it..

Food sensitivity test - blood test was done by Dr Naturopath and among other things my Candida level were very high. Along with the diet I also take probiotics ( candida control) and now different kind. GI doctor can also prescribe stool test which may show this problem but my doctor never did even if I had most of the symptoms. The diet takes months to take care of Candida overgrowth from 3 to even 6 or more depends from person to person and how good you are with your diet. I was told that when I am done with my prescribed probiotic and feel like my symptoms are better or gone I can retest Candida to see if the levels are back to normal. I read that stool test is more detailed so I may continue with that. I can only say that after 5 days of Candida diet 90% of my GI symptoms were gone. I don't feel like I am 100% there yet and I have probably around 2 months to finish my supplement so I continue to do my best with the diet.

Post Edited (Bstrong) : 6/25/2017 1:37:33 PM (GMT-6)


Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 6/27/2017 5:16 AM (GMT -7)   
Hi Bstrong,

I wish you well in beating back this Candida overgrowth. I did a bit of searching and reading about it. After perusing many articles on the topic, one article stood out above the rest - this article on acidity/alkalinity:

https://www.thecandidadiet.com/ph-levels-candida.htm

This article indicates that Candida can only switch to its "fungal pathogenic form" under neutral/alkaline conditions. Once this happens, the overgrowth makes the colon even more alkaline! I had the pH of my feces tested and it is comfortably on the acidic side (pH 5.8). This is the result of supplementing my diet with potato starch everyday. The products of fermentation of resistant starch are acids - acetic acid, propionic acid, and butyric acid. I suspect that the vast majority of people with autoimmune disorders have colon pH in the alkaline region, which is very unhealthy because it provides a breeding ground for pathogenic bacteria.

It is a real mystery why there is a reluctance to add potato starch to the diet, but no reluctance to take a medication that has severe side effects clearly stated on the drug product sheet.

chrisnyc
New Member


Date Joined Jul 2017
Total Posts : 1
   Posted 7/24/2017 2:06 PM (GMT -7)   
Dear Scott007,

Just discovered you today. I am 007ing with all of this, details later, but in the mean time: what do you think of histamines, particularly H4, and it's influence on autoimmune disease, including palindromic arthritis? A low histamine diet does not include white potato or fermented foods. Your opinion will be so greatly appreciated. My sister was diagnosed with RA and now instead Palindromic arthritis. The curve ball is that the sun gives her the terrible flares, and that is not being addressed ( no, not lupus pretty sure). When she takes antihistamine helps, but not good enough. Instead of methotrexate, starting soon on hydroxychloroquine. I am researching other ways to go... she has a bad stomach and is gluten free for along time now. She did have benign polyps in colon. DX RA 2014, now a dr says not RA but palindromic arthritis. It got really really bad recently, so now we have to take action asap! Thank you for your time to this, it is much appreciated. ( ps she has had a host of ailments over the past decades, including EBV, Lymes)

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 78
   Posted 7/25/2017 7:02 AM (GMT -7)   
Dear Chrisnyc,

Sorry to hear about your sister's condition. The histamine H4 receptor "may" be a player in palindromic rheumatism, but I doubt that it alone is responsible. When you say "antihistamine helps, but not good enough", it suggests that there are other inflammatory mediator(s). I read that half of the people who have palindromic rheumatism eventually develop rheumatoid arthritis. I also read this online: "The doctor may diagnose this condition after a complete medical history, physical examination, and possibly X-rays. Laboratory tests may be ordered to rule out rheumatoid arthritis. No one test can diagnose palindromic rheumatism." It is not clear to me how they distinguish between these two conditions. It is quite common for rheumatoid arthritis to be misdiagnosed initially. For the first two years, my mother was told that she had gout. I was diagnosed as having a neuroma (inflammation of the nerve) in my foot. Rheumatoid factor did not show up in my blood tests for a while. It is always good to get a second opinion from another doctor if your sister has not already done so. I am stumped about the sensitivity to sun exposure. What do the doctors have to say about that?

When you say that "she has a bad stomach" (assuming you mean the digestive tract in general), that sets off some alarm bells. I was on Enbrel for 12 years. I tried Paleo for 2 years - didn't work. I tried high-dose omega-3 for over a year - didn't work. I tried gluten-free for over a year - didn't work. It was not until I started getting blood in my stools two years ago that I began to research the colon as a possible cause. I am a scientist and began reading journals of inflammation, immunology, and cancer (colorectal cancer in particular). The one item that came up over and over was "butyrate", a product from the bacterial fermentation of resistant starch (RS). I researched which food had the highest percentage of RS and potato starch (NOT potato flour) fit the bill at 70 - 80%. After taking about 140 grams suspended in water every day for 3 months, there was a very noticeable reduction in RA pain. After a year, I was able to go off the Enbrel completely. I have not given an Enbrel injection in 9 months. I run, bike, and do all of the things that I did before getting RA. I eat just about any kind of food. The only thing that gives me a little discomfort is eating red meat more than about twice per month.

Will this work for your sister? I will answer this by saying that from my analysis of the scientific literature, I believe that the dramatic rise in type 2 diabetes, cardiovascular diseases, colorectal cancer, and autoimmune disorders over the past half century is the direct result of an insufficient amount of resistant starch in the western diet, resulting in butyrate deficiency in the colon. It is certainly worth a try. She may experience some loose stools and gas initially, but that typically goes away after a few weeks. If it proves to be too much, the amount of potato starch can be reduced and slowly ramped up. I have read that 40 - 50 grams of RS per day is recommended, but that is for a "healthy" person. In the case of individuals with autoimmune disorders, I believe that the colon has become dysfunctional and requires much more. The western diet has about 5 - 10 grams of RS. It takes some time to restore the health of the colon.
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