Saturday, August 13, 2016

Learn About SIBO: Attention PD Community! GI Symptoms in PD Which Your Parkinsons Doctor May Not Be Able to Explain

Attention Pd Community! Learn About SIBO: GI Symptoms in PD Which Your Parkinsons Doctor May Not Be Able to Explain
By Leonore Gordon, LCSW

If you have Parkinsons and have had inexplicable weight loss, abdominal pain, are frequently bloated, gassy, feel full after eating very little food, and have IBS or Gastric Reflux symptoms, constipation or diarrhea, all along with a recent dramatic reduction in the effectiveness of your PD meds, and if all of your medical tests have shown nothing your doctors can clearly point to, please look up "Parkinson's and SIBO" (Small Intestine Bacterial Overgrowth), and "Parkinson's and Gastroparesis." Here's one useful link, and there are other links below.

Basically, as our PD progresses, our GI systems (along with other systems) slow down, and infections easily hang out as food moves sluggishly through our bodies, inviting bacteria formation. All of these SIBO symptoms can follow a GI infection.  A web site of a St. Louis GI practice GIDOCTOR.NET  has an informative SIBO CENTER section, but not the PD connection. Check out, and SIBO Center, then Research, to better understand SIBO. 
Please read below info., and share the following with your Movement Disorder Doctor, and with your GI (if you have one). 
The good news is that there are treatments which can get you back to normal mobility. First line of defense is a GI specific antibiotic called Xyfaxan, or Rifaximin (generic). 
Unfortunately, both drugs are expensive, made by Valeant Pharmaceutical, a incorrigibly greedy big Pharm excoriated by committees in both houses of Congress in the past year for its predatory price-fixing. Some Part D and Medicaid plans do cover it, and you can also ask your doctor if they can get you free samples if you have problems finding either Xyfaxan or Rifaximin. 

If you think you may have SIBO, find a PD-educated GI who's willing to learn from you. You can be diagnosed through a special Hydrogen breath test, but that can be expensive. What has also helped me is Endozin (a digestive enzyme you can order from Amazon).  
Once you have SIBO, it's tough to solve fully without changing your diet dramatically, and switching to foods all of our stomachs digest easily, called "Low FODMAP" foods. (See more below) Giving up foods you love can be really hard, but you do feel better in the long run.  

 The Research community has done very little research on SIBO and PD but some does exist. Here are a few scholarly citations. 

Treating SIBO Through Diet

Google LOWFODMAP diets, and start cutting out foods with high FODMAPs (fermentable short chain carbohydrates). It's hard, but often the best solution.   Look for a nutritionist who understands SIBO, as well as PD issues. Many of us taking Levadopa need to avoid animal protein and iron near our dosage times, as protein and iron compete with dopamine for absorption in our systems, and dopamine usually loses the competition,thus  interfering with our PD meds and our mobility.  Avoiding both High Fodmap foods and protein when we eat can be a real challenge if we're trying to maintain a heathy weight.
WebMD article recently posted a useful article about gas-producing foods which a list which somewhat  overlapped the High FODMAP food list:

Personal Note:

For me, what has specifically helped SIBO symptoms, along with dietary changes, has been a variety of western and complementary medicines. 
1) Xyfaxan 

2) the digestive enzymes, Endozin, which can be ordered from Amazon. (Description of its contents: "Zinc carnosine has been shown to provide the first line of defense in gut repair. By promoting healthy mucus secretion, exerting antioxidant properties, and defending messenger cells, Endozin puts the kibosh on digestive offenders and protects the stomach and small intestine from further injury."
My GI said this digestive enzyme was fine.

3) I'm also feeling better from use of a lesser known drug, LDN (low-dose Naltrexone)  at a tiny dose of 2-4 mg., used for years by GI doctors experienced in treating SIBO. Again, check out the highly reputable GI practice in St.Louis,, and their SIBO Center, then Research, to better understand SIBO, and look for LDN research. They've had success in treating SIBO with LDN. My GI was willing to prescribe this.
 You'll need a prescription of 50 mg. Naltrxone for a pharmacy to cover your prescription, which a "compounding pharmacy" will then break down for you. 

Bottom line, changing my diet, after huge rebellion, helped me the most.

*Many thanks to Dr. Karen Raphael,  my old friend and researcher who was diagnosed with PD about 12 years after me. Dr. Raphael, who also has SIBO, learned about it, found an excellent GI practice in NYC wth doctors who understand and treat SIBO, and shared what she'd learned with me.  We are both finally feeling better, primarily from diet change.

High and Low FODMAP Foods

In one trial,  researchers tested three different diets, controlled by handing out frozen meals to the 37 patients, all of whom had irritable bowel syndrome. The study was designed as a cross-over, so all patients got a week on each test diet (high gluten, low gluten or no gluten) with two weeks in between. The end of the study was a three-day repeat, where each patient got three days of gluten and another three days without. While there were some upset stomachs, no symptoms could be directly attributed to the gluten in the patients’ diets. Instead, the results suggested a placebo effect: If you think your stomach will be upset, you probably will have tummy trouble, no matter what diet you’re on.

Some might say that this study’s results mean that gluten sensitivity in general is “bogus.” But the study authors propose that something else entirely is to blame for gastrointestinal distress in IBS patients. Instead of gluten, look to fermentable short chain carbohydrates, called FODMAPs. These molecules are in wheat, barley and rye, as well as other foods including apples, cabbage and beans.

FODMAPs are always going to cause some trouble. They aren’t absorbed well in the small intestine, and when they hit the large intestine, they get fermented by bacteria. That fermentation process is what gives us bean farts and cabbage gas. But while the burrito bloat will happen to everyone, study coauthor Peter Gibson, a gastroenterologist at Monash University, hypothesizes that people with IBS are more sensitive to the gastrointestinal stretching produced by FODMAPs, resulting in more pain and symptoms. Since cutting out gluten also tends to cut out some FODMAPs, he says, people with IBS may well assume that gluten was the culprit.

In the new study, the test diet was also carefully designed to be low in FODMAPs. Gibson’s laboratory also reported in the Sept. 26 Gastroenterology that 30 IBS patients cut their gastrointestinal symptoms in half when they spent 21 days on a diet low in FODMAPs.

Gibson has written a book promoting a low FODMAP diet, but more research is needed before the next diet craze takes hold. Other studies have shown positive effects of gluten-free diets in IBS patients.  Some patients who self-identify as gluten-sensitive could well have other diagnoses that have not been ruled out, including FODMAP sensitivity, sensitivity to fructose or sensitivity to other proteins in wheat.

Maureen Leonard, a pediatric gastroenterologist at Massachusetts General Hospital in Boston, is particularly concerned that a gluten-free diet may not, in fact, be any lower in FODMAPs. “Many foods that are naturally gluten free such as fruits, vegetables and beans are quite high in FODMAPS,” she says. “In patients we see with true gluten sensitivity, gluten or wheat is the culprit causing the gastrointestinal distress.” She also has worries about the patient selection for the new study and the group’s earlier work. The patients were all self-selected as being sensitive to gluten. “Non-celiac gluten sensitivity can be defined as follows:  individuals without celiac disease whose symptoms improve on a gluten-free diet after ruling out other conditions,” Leonard says. Because the patients’ symptoms were not necessarily controlled on a gluten-free diet at the start of the study, “the subjects in these studies do not meet these criteria.”

Leonore Gordon, LCSW
130 8th Ave. #3A Bklyn. NY 11215 
(718) 783-1986