IBS

SIBO, IBS, and Constipation: Unrecognized Thiamine Deficiency?

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thiamine, SIBO, IBS, constipation

In many of my clients, chronic upper constipation and gastroesophageal reflux disease (GERD) are misdiagnosed as bacterial overgrowth. Unfortunately, they are often non-responsive to antimicrobial treatments. Yet, sometimes the issues are fixed within a few days of vitamin B1 repletion. This has shown me that often times, the small intestinal bacterial overgrowth (SIBO) is simply a symptom of an underlying vitamin B1 or thiamine deficiency.

GI Motility and Thiamine

The gastrointestinal (GI) tract is one of the main systems affected by a deficiency of thiamine. Clinically, a severe deficiency in this nutrient can produce a condition called “Gastrointestinal Beriberi”, which in my experience is massively underdiagnosed and often mistaken for SIBO or irritable bowel syndrome with constipation (IBS-C). The symptoms may include GERD, gastroparesis, slow or paralysed GI motility, inability to digest foods, extreme abdominal pain, bloating and gas. People with this condition often experience negligible benefits from gut-focused protocols, probiotics or antimicrobial treatments. They also have a reliance on betaine HCL, digestive enzymes, and prokinetics or laxatives.

To understand how thiamine impacts gut function we have to understand the GI tract. The GI tract possesses its own individual enteric nervous system (ENS), often referred to as the second brain. Although the ENS can perform its job somewhat autonomously, inputs from both the sympathetic and parasympathetic branches of the autonomic nervous system serve to modulate gastrointestinal functions. The upper digestive organs are mainly innervated by the vagus nerve, which exerts a stimulatory effect on digestive secretions, motility, and other functions. Vagal innervation is necessary for dampening inflammatory responses in the gut and maintaining gut barrier integrity.

The lower regions of the brain responsible for coordinating the autonomic nervous system are particularly vulnerable to a deficiency of thiamine. Consequently, the metabolic derangement in these brain regions caused by deficiency produces dysfunctional autonomic outputs and misfiring, which goes on to exert detrimental effects on every bodily system – including the gastrointestinal organs.

However, the severe gut dysfunction in this context is not only caused by faulty central mechanisms in the brain, but also by tissue specific changes which occur when cells lack thiamine. The primary neurotransmitter utilized by the vagus nerve is acetylcholine. Enteric neurons also use acetylcholine to initiate peristaltic contractions necessary for proper gut motility. Thiamine is necessary for the synthesis of acetylcholine and low levels produce an acetylcholine deficit, which leads to reduced vagal tone and impaired motility in the stomach and small intestine.

In the stomach, thiamine deficiency inhibits the release of hydrochloric acid from gastric cells and leads to hypochlorydria (low stomach acid). The rate of gastric motility and emptying also grinds down to a halt, producing delayed emptying, upper GI bloating, GERD/reflux and nausea. This also reduces one’s ability to digest proteins. Due to its low pH, gastric acid is also a potent antimicrobial agent against acid-sensitive microorganisms. Hypochlorydria is considered a key risk factor for the development of bacterial overgrowth.

The pancreas is one of the richest stores of thiamine in the human body, and the metabolic derangement induced by thiamine deficiency causes a major decrease in digestive enzyme secretion. This is one of the reasons why those affected often see undigested food in stools. Another reason likely due to a lack of brush border enzymes located on the intestinal wall, which are responsible for further breaking down food pre-absorption. These enzymes include sucrase, lactase, maltase, leucine aminopeptidase and alkaline phosphatase. Thiamine deficiency was shown to reduce the activity of each of these enzymes by 42-66%.

Understand that intestinal alkaline phosphatase enzymes are responsible for cleaving phosphate from the active forms of vitamins found in foods, which is a necessary step in absorption. Without these enzymes, certain forms of vitamins including B6 (PLP), B2 (R5P), and B1 (TPP) CANNOT be absorbed and will remain in the gut. Another component of the intestinal brush border are microvilli proteins, also necessary for nutrient absorption, were reduced by 20% in the same study. Gallbladder dyskinesia, a motility disorder of the gallbladder which reduces the rate of bile flow, has also been found in thiamine deficiency.

Malnutrition Induced Malnutrition

Together, these factors no doubt contribute to the phenomena of “malnutrition induced malnutrition”, a term coined by researchers to describe how thiamine deficiency can lead to all other nutrient deficiencies across the board. In other words, a chronic thiamine deficiency can indirectly produce an inability to digest and absorb foods, and therefore produce a deficiency in most of the other vitamins and minerals. In fact, this is indeed something I see frequently. And sadly, as thiamine is notoriously difficult to identify through ordinary testing methods, it is mostly missed by doctors and nutritionists. To summarize, B1 is necessary in the gut for:

  • Stomach acid secretion and gastric emptying
  • Pancreatic digestive enzyme secretion
  • Intestinal brush border enzymes
  • Intestinal contractions and motility
  • Vagal nerve function

Based on the above, is it any wonder why thiamine repletion can radically transform digestion? I have seen many cases where thiamine restores gut motility. Individuals who have been diagnosed with SIBO and/or IBS and are unable to pass a bowel movement for weeks at a time, begin having regular bowel movements and no longer require digestive aids after addressing their thiamine deficiency. In fact, the ability of thiamine to address these issues has been known for a long time in Japan.

TTFD and Gut Motility

While there are many formulations of thiamine for supplementation, the form of thiamine shown to be superior in several studies is called thiamine tetrahydrofurfuryl disulfide or TTFD for short. One study investigated the effect of TTFD on the jejunal loop of non-anesthetized and anesthetized dogs. They showed that intravenous administration induced a slight increase in tone and a “remarkable increase” in the amplitude of rhythmic contractions for twenty minutes. Furthermore, TTFD applied topically inside lumen of the intestine also elicited excitation.

Another study performed on isolated guinea pig intestines provided similar results, where the authors concluded that the action of TTFD was specifically through acting on the enteric neurons rather than smooth muscle cells. Along with TTFD, other derivatives have also been shown to influence gut motility. One study in rats showed an increase in intestinal contractions for all forms of thiamine including thiamine hydrochloride (thiamine HCL), S-Benzoyl thiamine disulphide (BTDS -a formulation that is  somewhat similar to benfotiamine), TTFD, and thiamine diphosphate (TPD). A separate study in white rats also found most thiamine derivatives to be effective within minutes.

Most interestingly, in another study, this time using mice, the effects of thiamine derivatives on artificially induced constipation by atropine and papaverine was analyzed. The researchers tested whether several thiamine derivatives could counteract the constipation including thiamine pyrophosphate (TPP), in addition to the HCL, TTFD and BTDS forms. Of all the forms of thiamine tested, TTFD was the ONLY one which could increase gut motility. Furthermore, they ALSO showed that TTFD did not increase motility in the non-treatment group (non-poisoned with atropine). This indicated that TTFD did not increase motility indiscriminately, but only when motility was dysfunctional. Finally, severe constipation and gastroparesis identified in patients with post-gastrectomy thiamine deficiency, was alleviated within a few weeks after a treatment that included three days of IV TTFD at 100mg followed by a daily dose of 75mg oral TTFD. Other symptoms also improved, including lower limb polyneuropathy.

To learn more about how thiamine affects gut health:

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This article was first published on HM on June 1, 2020. 

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Thiamine for Fibromyalgia, CFS/ME, Chronic Lyme, and SIBO-C

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The Road to Thiamine

In August 2020, I was at my wits end. I had developed gastroparesis in March 2020, after 10 days of metronidazole (Flagyl), for a H. Pylori infection and SIBO-C symptoms. After seven days, I developed the symptoms usually associated with the intake of this drug – nausea, confusion, anxiety, paranoid thinking and mild gastroparesis symptoms. I no longer had bowel movements initiated by my body and had to use enemas twice a week. This state continued and worsened until the end of July 2020, when I also had a surgery for stage 4 endometriosis.

I managed to stay alive those months by eating an elemental diet (90%) and a few bits of solid food such as white rice, goat cheese, or lean meat. After the surgery, however, my gastroparesis got worse. I contacted my family doctor at the end of August and told her that I could no longer eat any solid food without severe nausea and that I need to be in a hospital to be fed intravenously or with a gastric tube. She agreed that my situation demanded immediate attention and she wrote me the referral for an inpatient hospital admission.

I was lucky though that at that exact time, I stumbled upon the low oxalate diet mentioned by a member of a Facebook group. I joined the Trying Low Oxalate (TLO) group on Facebook and read what researcher Susan Owens wrote about oxalates. I started implementing it and realized that small portions of low oxalate food every 2-3 hours were accepted by my body. In a few weeks my gastroparesis symptoms were reduced and my belly pain diminished.

From the Low-Oxalate Diet to Discovering Beriberi Disease

At some point in September 2020, while researching oxalates, I found Elliot Overton’s videos on oxalates and I listened to them. I also read his articles on this website where he talks about allithiamine, a thiamine supplement that contains something called TTFD, as being something radically different in terms of its unparalleled effects on the human body. I was skeptical, because I had spent about 20,000 euro on supplements in the previous four years, each of them being promoted as health-inducing by big names in the field of chronic Lyme disease, MTHFR, CFS/ME, SIBO and so on, while their effects on my health were only partial and temporary at best.

I decided that this would be the last supplement I’d buy. The worse would be losing 40 euros and I had already spent too much on worthless treatments. I took 150 mg allithiamine + magnesium + B2 + B3 for 3 weeks and I was less tired, could move more around the house, and overall was feeling much better, even my extreme light sensitivity was subsiding. Then I stopped taking it, not sure it was doing anything. That’s when I knew that it had worked and that I needed it badly. I took the same dosage for another 2 weeks. The next three weeks I had to wait to receive it from the USA, and I was again completely bed ridden.

However, I used this time to read most of Dr. Derrick Lonsdale’s book on thiamine deficiency. I became convinced that I had dry beriberi and that most of my neurological symptoms were caused by thiamine deficiency. I also noticed that the dosage is highly individual and some individuals needed very high doses of thiamine per day in order to function.

I now understood, why 2015 was the year I became bedridden for most than 90% of the time: I spent 6 months in a very hot Asian country, as part of my master degree studies. The energy requirement to deal with the hot weather and the demanding job depleted my already low thiamine levels. At that time, I was on my way to diabetes as well. I had fasting blood sugar levels of 120 mg/dl. I could no longer assimilate/use carbs in the quantities my body required (70% of the daily caloric intake) and I was always hungry and always thirsty. Looking back on my childhood and my ever-declining health from 2008 onwards, it was clear to me that I had problems with thiamine.

The Astonishing Effects of Thiamine

In December 2020, I increased my thiamine dosage to 300 mg per day and I was astonished at the changes I experienced – an 80% reduction across all my symptoms and some even completely disappear.

Mid-January, I decided to increase my allithiamine dosage to 450-600 mg because I felt like my improvements were stagnating. I also noticed that during the days I was more physically active (meaning: I cooked food for longer that 10-15 minutes, my energy levels were higher when I was taking more allithiamine and I didn’t experience the typical post-exertional malaise I was used to in the past). I also noticed that taking allithiamine alone in high doses doesn’t work so well and that the active B complex capsules and the B3 I was taking did have an important part to play in how I felt.

In the beginning of February, I was craving sugars so badly, that I gave in and bought a cake for my birthday. I ate two slices and discovered that my mental confusion, the brain fog and generally poor cognitive skills improved “overnight”. I was astonished, since I had been led to believe that “carbs are bad”, “sugar is bad” and “gluten is bad” and that the problem was with the food itself rather than with my body missing some vital nutrients. I didn’t experience any side effects from the gluten either, even though my food intolerance test shows a mild reaction to gluten containing cereals.

By February 20th, this high-dose allithiamine ‘protocol’ and the ability to eat carbs again, eliminated all of my symptoms of SIBO-C/IBS-D/slow transit constipation, endometriosis, CFS/ME, fibromyalgia, constant complicated migraine with aura, severe food intolerances, including a reversal of my poor cognitive skills. I was able to discuss highly philosophical concepts again, for one hour, without suffering from headaches and insomnia.

Early Metabolic and Mitochondrial Myopathies

On February 21st, I decided to go for a walk. I walked in total that day 500 meters AND walked up four flights of stairs, because I live on the 4th floor without an elevator. By the end of that day, my disease returned and I became bedridden again. I could not believe it. This was the only thing I did differently. I just walked slowly.

And so I searched the internet for “genetic muscle disease”, because my sister shares the same pattern of symptoms. A new world opened before my eyes. I found out that in the medical literature, exercise intolerance, post-exertional malaise and chronic fatigue are well known facts and are described in conditions known as “myopathies”. That there are several causes for myopathy and that they can be acquired (vitamin D or B1 deficiency, toxic substances impacting the mitochondria, vaccines and so on) or inherited. It was also interesting to find out that while doctors manifestly despise and disbelieve CFS/ME symptoms, they are not utterly unknown and unheard of or the product of “sick” minds.

When I read this paper, although old and maybe not completely accurate in the diagnostics, I understood everything about my health issues.

I remembered my mother telling me that my pediatrician said he suspected muscular dystrophy when I was one years old, because I could not gain weight. I weighed only 7 kg at the age of one year, but he wasn’t convinced and so no tests were done in communist Romania. In addition to being overly thin, throughout my childhood, I always had this “limit” that I couldn’t go past when walking uphill or if I ran up a few flights of stairs, no matter how fit and in shape I was. Otherwise, I would develop muscle weakness such that my muscles felt like jelly. I would become completely out of breath, which I now know is air hunger. I couldn’t climb slightly steeper slopes without stopping 2/3 of the way up. My heart would beat very hard and very fast. I would feel like I was out of air and collapse. I first experienced this at the age of 5-6 and these symptoms have been the main feature of my physical distress since.

Because of these symptoms, I have led a predominantly sedentary lifestyle with occasional physical activity, never daily, apart from sitting in a chair at school. I didn’t play with classmates for more than 5 minutes. I couldn’t participate in physical education classes. Any prolonged daily physical activity led to general weakness, muscle cramps, prolonged muscle “fever”, and so I avoided them.

Now, I know why. Since reading this article, I was able to present my entire medical history to a neurologist and my symptoms were instantly recognized as those of an inherited mitochondrial or metabolic myopathy. I am currently waiting for the results of the genetic tests ordered by the neurologist, which will make it possible to get the right types of treatments when in a medical setting.

Before Thiamine: A Long History of Unexplained Health Issues

In addition to the problems with gaining weight and inability to be active, I had enuresis until 9 years old, along with frequent dental infections, and otitis. I had pain in my throat every winter, all winter and low blood pressure all the time. At 14 years of age, I weighed about 43-45 kg. I remained at that weight until age 27. I had a skeletal appearance. I also had, and continue to have, very flexible joints. For example, my right thumb is stuck at 90 degrees, which I have to press in the middle to release. I can feel the bone repositioning and going into the joint. This happens at least once a week.

My diet was ovo-lacto-vegetarian diet, with 70% of the calories coming from carbohydrates from when I was able to eat until 2015. In 2015, I could no longer process carbohydrate due to severe thiamine deficiency.

Since the age of 18, I have had quasi-constant back pain in the thoracic area. I have stretch marks on thighs, but have had no sudden weight gain/loss. Among the various diagnoses I had received before the age of 18 years old:

  • Idiopathic scoliosis – age 18. No treatment.
  • Iron deficiency anemia – at 18. Treatment with iron-containing supplements. No result.
  • Frequent treatments for infections (antibiotics)
  • Fasting hypoglycemia (until 2015).

The Fibromyalgia Pit

In 2008, my “fibromyalgia” symptoms began, although looking back at my history, many of these symptoms were there all along. I made a big change in my physical activity levels and this began my 12 year decline in health. In 2008, I started my philosophy studies at the university and decided to get more “in shape” by walking daily to and from the university. A total of 6 km per day.

  • Constant fatigue, no energy.
  • Worsened back pain.
  • Weak leg muscles at the end of the day.
  • Frequent nightmares from which I could never wake up. I felt like I couldn’t find my way out of sleep. After waking up, I would sit down and after 10 minutes I found that my head had fallen on my chest and I had fallen asleep involuntarily, suddenly.
  • Sensations of waves of vibrations passing through me from head to toe, followed by the sensation of violent “coming out” of the body and out-of-body experiences.
  • Heightened menstrual symptoms.
  • Fairly frequent headaches.

Over the summer, I recovered completely as I resumed my predominantly sedentary lifestyle. Then, in the fall, I began walking to and from university again, and my symptoms just got worse. This cycle continued for the next few years. My symptom list expanded to include:

  • Migrating joint pains.
  • Frequent knee tendinitis.
  • Pain in the heels.
  • Generalized pain, muscles, joints, bones.
  • Frequent headaches.
  • Sleep disturbance with insomnia beginning at 2-3am every night.
  • Frequent thirst, increased water intake (3-4 l/day).
  • Frequent urination, especially at night (woken 2-3 times).
  • Bumping my hands on doors/door frames.
  • Unstable ankles.
  • Painful “dry” rubbing sensation in hip/femur joint.
  • Prolonged angry spells.
  • Memory problems (gaps).
  • Difficulty learning new languages.

I underwent a number of tests including, blood tests, X-ray + MRI of the spine, and a neurological consultation. All that came back was high cholesterol (180 LDL, 60 HDL), low calcium, iron deficiency anemia, scoliosis, and hypoglycemia. No treatment was offered.

From February 2010-August 2010 I had a scholarship in Portugal. Philology studies interrupted. I was using public transport to go to classes, which were about only 3 hours a day. I required bed rest outside classes with only the occasional walk. I had a complete remission of all symptoms in July 2010 when I returned home and resumed my sedentary lifestyle. This was the last complete remission.

From August 2010 – December 2010, I resumed day courses at both universities and resumed the walking.

All of my symptoms were aggravated enough that by December I was bedridden. I stopped attending classes due to back pain in sitting position. I wrote two dissertations lying in bed. Once again, I sought medical advice and had a number of tests and consultations with specialists. I was diagnosed with peripheral polyneuropathy and “stress intolerance”, fibromyalgia. The treatment offered included:

  • Medical gymnastics: aerobics, yoga and meditation presumably to get me in shape and calm me down.
  • Calcium and iron supplementation, gabapentin, and low-dose mirtazapine.

The physical activity worsened symptoms, as it always does. The mirtazapine improved my sleep. I took it for 2 weeks and then stopped because I was gaining weight extremely fast.

From 2011 – October 2012, I was almost completely bedridden. I had to take a year off because I couldn’t learn anything, my head hurt if I tried.  The physical symptoms improved after about a year, as did the deep and total fatigue. I tried to get my driver’s license in 2012, but failed. I couldn’t remember the maneuvers and the order in which to perform them. I couldn’t concentrate consistently on what was happening on the road. There was too much information to process very quickly.

From 2012-2015, I was getting my master’s in France. This aggravated all of my symptoms of exertion, both physical and intellectual. In 2013, I underwent general anesthesia for a laparoscopic surgery due to endometriosis, after which something changed in my body and I never fully recovered to previous levels of health. I took another year break between the two years of master’s studies. I couldn’t learn anymore. Symptoms relieved a bit by this break. After three months in Thailand for a mandatory internship, in one of the most polluted cities in the world, I got sick and developed persistent headache, with very severe cognitive difficulties. At this point, 90% of my time was spent in bed.

A general anesthetic in the autumn of 2015 for a nose tumor biopsy was the “coup de grâce”. Since then, I only partially recovered a few hours after a fluid infusion in the emergency ward and a magnesium infusion during a hospital stay in Charites Berlin in 2016. Other improvements: daily infusions of 1-2 hours with vitamins or ceftriaxone.

How I Feel Since Discovering Thiamine

In order to recover from the crash I experienced in February, I increased my B1 (TTFD) intake mid-March and made sure I was eating carbs every three hours, including during the night. I need about 70% of my total caloric intake to come from carbs.

I am currently taking 1200 mg B1 as TTFD, divided in 4 doses, 600-1200 mg magnesium, 500 mg B2/riboflavin, 3 capsules of an active, methylated B vitamin complex, 80-200 mg Nicotinamide 3X per day and 1-2 capsules of a multi-mineral and a multi-vitamin. I make sure I eat enough proteins, especially from pork meat, because it contains high amounts of BCAAs and helps me rebuild muscles.

I walked again the last week of April 2021, 500m in one day, because of a doctor’s appointment. I did not experience a crash that day or the following days. I did not have to spend weeks recovering from very light physical activity.

I can now use my eye muscles again, and read or talk with people online. I can cook one hour every day without worsening my condition.

After 5 years of constant insomnia, only slightly and temporarily alleviated by supplements, I can finally sleep 7.5 hours every night again. I no longer wake up 4-5 times a night.

My wounds are healing and my skin is no longer extremely dry and cracked.

My endometriosis, SIBO-C, gastroparesis, food intolerances, “fibromyalgia” pain, muscle pain due to hypermobility, are all gone.

And to think that all of this was possible because of vitamin B1 or thiamine, in the form of TTFD and that I almost didn’t buy it, because I no longer believed in that ONE supplement that would help me!

I will always be grateful for the work Dr. Derrick Lonsdale, MD, researcher Chandler Marrs, PhD and Elliot Overton, Dip CNM CFMP, have done so far in understanding, treating and educating others about chronic illnesses. More than anything, more than any physical improvement I experienced so far thanks to their work, what I gained was truth. Truth about a missing link, multiple diseases being present at one time and about why I have been sick my entire life.

Physical Symptoms and Diagnoses Prior to Taking Thiamine

  • Fibromyalgia and polyneuropathy diagnostic and mild, intermittent IBS-C since 2010;
  • Endometriosis symptoms aggravating every year, two surgeries, stage 4 endometriosis in 2020;
  • Surgeries under general anesthesia severely worsened my illness and set my energy levels even lower than they were before;
  • CFS/ME symptoms, hyperglycemia/pre-diabetes, constant 2-3 hours of insomnia per night and constant 24/7 headache since 2015, following an infection and during my stay in a very hot climate;
  • POTS, Dysautonomia, Post Exertional Malaise Symptoms from minor activities, starting with 2016;
  • Increased food intolerances (gluten, dairy, sugar/sweets, histamine, FODMAPs, oxalates, Sulphur-rich foods), to the point of eating only 6 foods since 2018;
  • Chronic Lyme disease diagnostic based on positive ELISA and WB test for IgM, three months in a row, in 2017;
  • Weight gain and inability to lose weight after heavy antibiotic treatment, skin dryness, cracking, wounds not healing even for 1.5 years, intolerance to B vitamins and hormonal preparations, since 2017;
  • Complicated migraine symptoms and aura, light intolerance, SIBO-C and IBS-D, slow intestinal transit, following a 4 month period of intermittent fasting that made me lose 14 kg, living in bed with a sleep mask on my eyes 24/7, severe muscle weakness, since 2018;
  • Two weeks recovery time after taking a 10 minute shower;
  • Gastroparesis, living on an elemental diet, in 2020;
  • All my symptoms worsened monthly, before and during my period.

Treatments Tried Prior to Thiamine

Gluten, dairy, sugar/sweets, FODMAPs, histamine, oxalate, Sulphur-rich foods/supplements free diets; AIP, SCD, Wahl’s protocol, candida diets; high dose I.V. vitamins and antibiotics, oral vitamins and antibiotics, liver supplements and herbs, natural antibiotics (S. Buhner’s protocol), MTHFR supplements, alkalizing diet, essential oils, MCAS/MCAD treatment, SIBO/dysbiosis diets and protocols, insomnia supplements, and any other combination of supplements touted as helpful for such symptoms.

And this is just what I remember top of my head. Their effect was, at best: preventing further deterioration of my body, but healing was not present.

Additional Literature

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image by Gordon Johnson from Pixabay.

This case story was published originally on May 11, 2021. 

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Severe Gut Dysbiosis, MCAS, and Oral Lichen Planus

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oral lichen planus

I have severe gut dysbiosis, and suffer from frequent urination, sensitive bladder, and functional dyspepsia. Testing shows that I have system-wide bacterial and fungal overgrowth, oral lichen planus, mast cell activation syndrome (MCAS), histamine intolerance and severe food sensitivities. I also have problems with my feet. They are very dry, tend to swell up, and there are weird itchy red sores that may be related to athletes foot or to something else.

Over the last two decades my diet has become increasingly restricted and I now am only able to tolerate white sushi rice and lean animal meats. Whenever I stray from that diet, I get severe mouth/throat/upper gut inflammation. As a result, I am severely deficient in a number of vitamins, which I have to inject, as I cannot tolerate them orally. I must restore diversity to my gut, clear the infections and expand my diet so I can get nutrients, but given the reactions I have to most foods, I do not know how.

Early History of Poor Diet

As a kid I ate a lot of sweets and didn’t have the best diet. I took a normal amount of antibiotics as a kid but had a lot of strep throat and colds. In 1997, I had the chicken pox at age 23. It was a mild case. I became more health conscious in my mid 20s and after I got campylobacter food poisoning in 1998, from food purchased from the fast food restaurant Wendy’s. I was treated with ciprofloxacin and made a full recovery. After that, I completely stopped eating fast food. I would say my diet was pretty balanced up until 2002 when I got sick. I should note, I was first exposed to black mold in 2000 and again in 2015.

The Long Decline

In 2002, I was on a 6 month course of Levaquin for a prostate infection I didn’t even have. Shortly after, I contracted giardia on a kayak trip. I developed post-infectious gastritis and severe lactose intolerance. In 2004, I had mercury exposure from dental work and developed the early stages of histamine intolerance. I then developed gluten intolerance in 2006 and IBS symptoms with constipation.

Nevertheless, I was stable for a number of years and in 2007, I contracted Lyme, Bartonella, Babesis and Mycoplasma. I tested very high for mycoplasma as well as other infections like Epstein Barr Virus. From there, I then went on to develop frequent urination, sensitive bladder, and functional dyspepsia. I developed oral lichen planus in 2008.

In 2011, I was prescribed Xifaxan, a drug used to treat IBS with diarrhea or traveler’s diarrhea, and it gave me chronic bloating, which I have had ever since. I had walking pneumonia a few times (mycoplasma) and possibly whooping cough in 2012.

In 2015, I had the flu and was under a lot of stress and had a major autoimmune flare up. I developed geographic tongue and the lichen planus got worse, as did my histamine intolerance. I was exposed to black mold and aspergillus during this period as well. My digestive symptoms got worse.

Increasingly Restricted Diet

In 2018, I took a high dose of probiotics that I had been taking for years and doing well on and it triggered some kind of major mast cell reaction in my upper gut. I have had reflux and gastritis-like symptoms ever since. My MCAS got worse and since 2018 I have been losing the ability to eat more and more foods without a reaction. Last year I tried low dose naltrexone and I had a severe autoimmune reaction to it. I have become even more hypersensitive to environmental triggers like pollution and pollen.

Right now I am 40lbs underweight and survive on white sushi rice and lean animal meats every single day. If I try to eat any plant based food, I get severe mouth/throat/upper gut inflammation. I also believe I have hydrogen sulfide SIBO. In September, I did a nasal culture which showed large amounts of coagulase positive staphylococci. My throat culture showed large amounts of streptococcus A and pseudomonas. My gut also tested positive for actinomyces.

Multiple Vitamin Deficiencies

For years my Vitamin D was suboptimal and recently tested and its 19 ng/mL. I had been giving myself weekly vitamin D injections, as I can’t tolerate any supplements, but I have recently stopped because they caused some new symptoms including: headache, dizziness, off balance, visual disturbances and loss of appetite. I am still dealing with issues a few weeks after stopping the injections. I read this can be a common side effect when people do not respond well to cholecalciferol. My plan is to purchase a special UV light for vitamin D and will try to raise my levels naturally. This is an ongoing theme. Whenever I make a little progress, I always seem to get a setback in some form, which makes this very frustrating. I also inject B complex and B12 which seems to really help with my reactions. I am very nutrient deficient especially in fat soluble vitamins and vitamin C.  Currently, I rub these vitamins on my skin and also use nasal resveratrol.

I must treat this severe dysbiosis somehow and am leaning towards antibiotics since I can’t tolerate probiotics or herbal formulas. I need to be extremely careful and have to come up with a really good protocol. I need to micro-dose and make sure I use the right antibiotic or combination of antibiotics. I also don’t want to flare up my gut or make my problems worse. If anyone can help me I would be grateful. I must restore diversity to my gut, clear the infections and expand my diet so I can get nutrients. Thank you.

Update

As of December 2021 I have not made the least bit of progress towards recovering my health. I went for Lyme treatment at the New York Center for Innovative Medicine this Summer and was extremely optimistic and hopeful that this would cure me. A close friend of mine went there and got her life back. Sadly, I am now 5 months post treatment and don’t feel even a tiny bit better in fact many of my old symptoms have resurfaced.

A year ago, I had black mold exposure which caused vestibular trauma and also gave me a visual processing disorder. So I now have to deal with visual and balance issues on top of debilitating daily gastrointestinal symptoms. For 18 months, I have been eating white rice, poultry breast, egg yolks and cod and my esophagus and stomach will flare up if I consume even a tiny piece of any vegetable. I have severe depression, anxiety, and am living in fear every day of my life. I spent $60,000 on medical expenses in 2021 and have absolutely nothing to show for it.

I am going to a special gastroenterology clinic in Ohio in March and will probably get an endoscopy. I am afraid this test will make me worse but I just have no options. I still think I have some kind of stealth infection or parasite in my gut that is causing all these issues. If anyone has recommendations for me I would be grateful.

Every single day I am losing more and more hope and am not sure how much longer I will survive. I am having my will drawn up because I just don’t see a future for myself. On top of this my stepfather was just diagnosed with stomach cancer and is going through chemotherapy now and the whole family is stressed out and this is taking a toll on me emotionally. Thanks for listening.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This story was first published on February 4, 2021. It was updated on December 29, 2021.

 

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Longstanding Mitochondrial Malnutrition in a Young Male Athlete

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Male athlete with mitochondrial malnutrition

My health issues started rearing their head in ninth grade, and given the vitiligo of my mother and MS (stabilized) of my father, perhaps it should not have been much of a surprise. I had mono in middle school, and then after getting a bad virus at the start of freshman year, my health deteriorated rather quickly.

Over the course of the first few years of high school, I was diagnosed with immunoglobulin deficiencies, gastritis induced anemia that was often recurrent, IBS, elevated blood sugar, insomnia, and hypothyroidism. I also developed hand tremors and was told I had SIBO. I was a student athlete and was often exercising over eight hours a week at the time. My diet in middle school represented the Standard American Diet, but after my health issues started, I ate a diet that loosely resembled the paleo diet without much benefit.

Entering college, doctors convinced me that my issues were due to malnutrition from undereating. I was encouraged to eat more and so I did. Over the next two years, I followed an unrestricted diet with a mix of junk and traditional health food. I went from 130 to 190lbs, a 60 pound weight gain. My stomach issues got better, but everything else remained the same, except I started experiencing anxiety and exhaustion. The doctors were right, but their advice was wrong. I wasn’t malnourished from a lack of food, but from a lack of the micronutrients that allow the mitochondria to convert food into energy. Looking back, it is no wonder I had no energy.

Just recently, I discovered the articles about thiamine on this website. It all began to make sense. Thiamine is a required mitochondrial nutrient, one that I was likely missing. I began thiamine and magnesium. I had previously tried magnesium, but I was intolerant to it. Since taking the duo for two weeks, I have started to notice a bit more energy, much better warmth in my extremities, and more stable blood sugar. However, that was preceded by major nausea, freezing low body temps, and worse blood sugar instability than ever suggesting a thiamine paradox at work. Here’s to hoping that this treatment works wonders going forward.

Health History

  • Current Age: 20
  • Height: 6ft
  • Gender: Male
  • Weight and body fat: 190lbs 15% Body fat

Family History

  • Mom with vitiligo
  • Dad with stabilized MS

Middle School

  • Had mono at one point, always generally had minor fatigue
  • Junk food diet

Ninth Grade

  • Got terrible stomach virus at start of year
  • Developed hand tremor
  • Found out I was anemic with collagenous gastritis. (I suspect it was actually iron overload aka Morley Robbins theory.)
  • Treated with Prilosec and iron supplements
  • Ate relatively low carb
  • Lots of tennis

Tenth Grade

  • Developed IBS
  • Discovered IGG and IGA deficiency and low vitamin D
  • Got SIBO diagnosis
  • Restricted diet even more by eliminating gluten and dairy
  • Lots of tennis and track

Eleventh Grade

  • Diagnosed hypothyroid
  • Took synthroid without success
  • Lots of tennis and track

Twelfth Grade

  • Unrestricted diet as doctors convinced me that undereating was the cause of my issues. I went from 130lbs to 160lbs.
  • Lots of tennis, track, and weightlifting

Freshman Year of College

  • Ate paleo style to drop weight, dropped to 150lbs.
  • Main issues were insomnia, chronic dry mouth, cold hands and feet, GERD, bloating, anxiety

Summer Before Sophomore Year Through End of Sophomore Year

  • Started eating a lot again, unrestricted, and went up to 175lbs over the course of a year with lots of heavy lifting
  • Fasting blood sugar of 99 and then 104
  • Same symptoms as freshman year
  • Tried things like megadosing zinc, megadosing vitamin D without success

Junior Year Through March 2021

  • Same symptoms as freshman year, but slightly improved due to nutrient density
  • Got shingles and recovered
  • Ate lots of eggs, whole milk, liver, oysters, ground beef, chocolate, liver, potatoes, rice, bagels, butter — Ray Peat style
  • Felt a bit better and warmer, but exhaustion became a symptom
  • Had negative reactions to magnesium supplements despite low RBC
  • I was trying to implement root cause protocol (Morley Robbins) after discovering my ceruloplasmin was low
  • Donated blood per Morley Robbins advice. Of all the stuff I have done, this provided the most benefit to me in terms of improved thyroid function and general sense of wellbeing, but still had tons of issues

Present

  • Discovered thiamine and this website and began thiamine supplementation. First with thiamine mononitrate March 20, 21. Suddenly, I had energy.
  • Switched to 250 mg Benfotiamine with 120 mg magnesium on March 24th.
  • Switched again to 100 mg Thiamax with 125 mg magnesium on March 25th.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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thiamine podcast

Podcast Alert!

Yes, I have been talking about thiamine again. This time with Dr. Kurt Woeller, as part of his series: Functional

Longstanding Thiamine Deficiency Ignored By Doctors

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Thiamine deficiency isn't all in your head

I would like to begin sharing my story, hoping to help others. My journey is from a nurse’s perspective. I recently learned I am thiamine deficient and likely have been for years. Thiamine deficiency affects the mitochondria, causing a disease process known as beriberi. Beriberi mimics many other illnesses, making it very difficult to diagnose. Let me begin by giving you a background about the woman I was before thiamine deficiency depleted my entire being.

I have always been highly driven. I am perfectionist to a fault. I was an honor student in high school, an active- athlete, a cheerleader for four years. I loved swimming, ice skating, rollerblading, skiing, and all sports. I led many extracurricular activities throughout high school and college. As the oldest of 5 siblings, I was the family leader and caregiver as well. I was always strong mentally and physically. I had survived spinal meningitis at age 5 years, after receiving my last rites while hospitalized in isolation several months. I lost my father shortly thereafter, but I survived.

I was a successful RN for nearly thirty years; a gynecological oncology nurse the first 20 years, and a postpartum nurse caring for mothers and their newborns the last ten years. I was married and had two children and even though I worked full-time, I was an avid volunteer, for activities involving both daughters through their elementary and high school years. I was the first and only woman president of my neighborhood association, organizing many monthly events throughout the year. I cared for my mother through ten years of Alzheimer’s. No family member was hospitalized without me as their private duty nurse advocating. I cared for my father in-law through colon cancer, then moved my mother-in-law in with us for 15 years after he died. I watched over her into her 90’s. Then I suffered loss upon loss: my mother, my father-in-law, several aunts, and two beloved family pets, followed by an awful divorce from my high school sweetheart.

Looking back, I understand why my marriage fell apart, I became a woman I barely recognized. I was in pain all the time. I was tired unable to be the “active fun loving Jane,” I had once been.

In 2006, I developed degenerative disc disease (DDD) in my neck, which ultimately led to a cervical fusion. Nevertheless, I returned to hospital nursing 8 weeks later and worked until I could no longer get through the nonstop days without pain. My nursing manager talked me into management after 28 years as a bedside nurse, which I loved. Then, I suffered a lower back injury that, together with my neck issues, incapacitated me from my nursing career. After losing my career, my marriage, and my home, I moved away from the home town which I loved. Multiple losses, stressors, and what I now believe was thiamine deficiency had me suicidal.

I tell you this, because the thiamine deficiency was insidious. It accrued over time. I was performing and had more energy than most… until one day, I didn’t.

My Silent Demise: Unrecognized Thiamine Deficiency

As I mentioned above, I developed DDD in 2006, and as result, I have suffered for years with intermittent nerve pain and muscle weakness. Over the years, the pain and weakness progressed to the point where by 2019, I could no longer walk or function. I had great fatigue, insomnia, depression, anxiety, and lack of energy. This was in addition to GI distress and signs/symptoms of IBS irritable bowel syndrome. I also had serious bladder issues of great urgency, leaking and even incontinence at times. Over time, I developed significant brain fog and cognitive difficulties. This included a “loss of words,” an inability to read and retain information or eventually, to write; all of which I had always loved doing. I began having memory issues and my nervous system seemed to be shutting down.

Looking back on my history, I had been hospitalized for chest pain 3-4 times ruling out pulmonary embolism or heart attacks. I have had a vitamin D deficiency for over 10 years despite supplementation and good diet and plenty of sunshine. My platelets ran high on and off for years. A hematologist ruled out many disease processes through lots of blood work. He even did a hip bone marrow aspiration and never found answers.

My blood pressure at one point was 200/100. I had tachycardia documented on EKG and on my own nursing checks. Heart palpitations were common. I sought the care of a few cardiologists over the years and had a number of cardiac tests all with no answers. I was frequently dizzy, seeing stars, and nearly passing out on many occasions. Five years ago, I was severely depressed and suicidal. I had lost so much weight, and looked anorexic at 108 pounds. Looking back, I have no idea how or why I had such rapid weight loss. Then the weight issue shifted.

By the end of last year, I had difficulty walking. I gained weight and have now been walking that fine pre-diabetic stage. I seem to be insulin resistant now. Added life stressors, once again caring for my sick and aging 81 year old aunt with multiple medical issues, has led to self-neglect.  I became short of breath on exertion, weak and faint. I began losing my hair. Thankfully, I once had a thick full head and so the hair loss was not immediately noticeable. Even so, I noticed, and I begged my doctor to help me learn why my hair was falling out and thinning so much but my concerns were made light of.

I pleaded with many doctors, asking to learn the cause of my multi-organ system’s failings. I suspected they were medication effect or vitamin deficiency related but several good doctors rolled their eyes when I begged to be tested.

I grew weaker and weaker, sicker and sicker as 2019 came to an end.

The Laundry List of Tests and Doctors Conclude: It’s All in My Head

An MRI in January 2020 showed cervical myelopathy but not significant enough to warrant more surgery (THANK GOD). The orthopedic surgeon and his nurse practitioner, offered Gabapentin (as did 5 other doctors) and physical therapy (PT). I refused the gabapentin because it had made me incoherent in the past. I agreed to try PT but was frustrated, since I had tried physical therapy more times than I can tell over the past ten years. This last time, in February, just the PT evaluation magnified all my symptoms and I barely walked back to my car. Returning to my vehicle, I felt like I was on fire with burning nerve/muscle pain all over.

Again, I adamantly refused meds without learning the cause.

I was sent to have an EMG (nerve-muscle functioning testing). The EMG showed multi-nerve damage, or “multiple peripheral neuropathies.” That was in March of this year. I had been twice before to this same physiatrist having EMG’s years prior due to ongoing “nerve pain.” Like many other doctors, he never suspected thiamine deficiency and implied that it was “all in my head.”

I was sent to another consult, a Brown University rheumatologist, who basically told me the same thing that my pain was “in my head,” as most docs do seeing history of “depression and chronic pain.”  On exam, I actually jumped when he touched my outer thighs and various areas on my body. I was super “nerve sensitive,” which he was attributing to “my mind.” Outer thigh pain/ sensitivity was a symptom of thiamine deficiency I’d later learn. After my RN daughter, acting as my advocate, spoke on my behalf asking for nutritional deficiency testing to rule out causes, he tried ordering labs but had little knowledge of what to order and “could not find the transketolase test or a simple Vitamin B1 test on my screen,” he replied. To appease me, he ordered multiple other labs and sent me on my way with no diagnosis and no return appointment.

For the multitude of GI symptoms, I was sent to a caring gastroenterologist who performed a colonoscopy and endoscopy with insignificant results and biopsies all normal. He too was empathetically puzzled, urging me to request a thoracic MRI due to my history of degenerative disc disease. Upon exam, this doctor was alarmed at my sensitivity at my breastbone area when touched. It was painful and clearly inflamed.

I had all the symptoms of multiple sclerosis (MS) too, so I had a brain MRI with and without contrast that I asked for after researching my symptoms, wanting to rule out MS too. The MRI showed: “a single small focus of flair hyper-intensity within the frontal lobe white matter, nonspecific and could not rule out demyelinating disease or MS…”

They ruled out “pinched nerves” in a thoracic MRI, recommended by the GI doc after not finding answers to my GI symptoms. I had repeated X-rays and a lumbar MRI having a lengthy history of lower back pain too.

The lumbar MRI incidentally found gallstones which sent me to a surgeon who recommended gallbladder removal. In this COVID environment, I have minimized symptoms with better diet and supplements thus far.

Discovering My Thiamine Deficiency: A Bit of Research and a Bit of Serendipity

In February 2020, I had begun reading the book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition,” written by Dr.’s Lonsdale and Marrs. From the case studies and the research, I knew that I had thiamine deficiency. The trick now was to get someone to believe me. I brought the book to an upcoming neurologist appointment. Although, with each of the 7 previous consults, blood work was done, it was this last consult, with an astute neurologist, that I found out why. He knew after examining me and listening to me that I was deficient in thiamine. He took the time to research my history and found that I’d been diagnosed as thiamine deficient 5 years ago, but sadly, no one told me. In 2015, lab tests showed that my thiamine was 6 nmo/L , below the lab’s reference range of 8-30 nmol/L. I was still deficient in thiamine in February 2020 with a result of 7 nmol/L. He explained that I “needed to take 100mg thiamine daily, starting immediately and that it would likely take 6-12 months to hopefully reverse symptoms.” He also indicated that I would need supplementation for life now. As I have continued to research and read about thiamine deficiency, I learned that I would likely need much higher doses of thiamine, in the form of something called TTFD. TTFD is a synthetic thiamine that crosses the blood brain barrier getting into the cells better.

A Possible Family History of Latent Thiamine Issues

I continued reading, researching, and learning from case studies and groups. Thiamine deficiency is much more common than thought today. It can be passed on at birth in an unknowing deficient mother. Looking back, I fully believe my mother was deficient given her history of problems in school, high anxiety, and severe depression on and off for years. Her symptoms worsened with divorce when she was still pregnant with her fifth child. Each of her children were born only 12 – 13 months apart! I recall her getting dizzy, feeling faint often. She suffered with leg pain for years.

I am most concerned over the genetic factors influencing me and my family. The first stages of thiamine deficiency see thyroid issues, which my mother, sister, and aunt all had/have. Diabetes runs in my family: my grandmother, aunts, sister, and I’m now at the pre-diabetic stage. Cardiac issues are often seen: my grandmother, mother, aunt, and I have had them. GI issues also are noted in multiple family members. The most worrisome disease is Alzheimer’s disease, which is often seen in late stages of thiamine deficiency according to research. My grandmother, mother, many of her sisters (now deceased) all had Alzheimer’s disease. I am currently seeing early Alzheimer’s and short-term memory loss in my 80 year old aunt and her 75 year old youngest brother.

I have been monitoring my aunt who could not tolerate the Alzheimer’s medications that she was given. I began using thiamine with her in March 2020. We began with a good B-Complex having 100mg thiamine mononitrate and then added 50 mg Allithiamine in mi- July when she got very sick with what I believe was Covid-19. I kept her on this dose through August and then upped it to 100mg in September. I am now seeing improvements. Her energy has improved greatly. Although still forgetful, her memory is improving. She recovered after three weeks with the virus, yet suffered with extreme fatigue many weeks to follow. I will write about her story in a subsequent post.

The Path to Recovery

As a nurse, journaling my symptoms, diet, supplements, and vital signs, etc., I have watched my symptoms, rated on a scale of 1-10 with 10 being worse, go from 7-8s down to 3-4s over the last 6 months, after beginning thiamine replacement. I have been thoughtfully self-experimenting, slowly increasing my TTFD, using the brands called Allithiamine and Thiamax along with magnesium and potassium for proper absorption. Since rebalancing thiamine often brings out other deficiencies, I alternate a good multivitamin/mineral supplement and B-Complex and take probiotics for good gut health and better absorption. Over the last 6 months:

  • My neuropathies, which were tested pre-thiamine in February 2020 and again in June 2020 after a little over 5 months into thiamine treatment, are reversing.
  • I am off all pain meds, antidepressants, and other scripts (weaned under supervision SLOWLY).
  • I am happier, calmer, healthier overall.
  • I am most impressed with my renewed desire and ability to read, write, and research and retain information learned!

I’m now so hopeful for a good recovery by next spring. I understand I will need thiamine supplementation for life now, hopefully in lower doses eventually. Time will tell.

Drugs Don’t Solve Vitamin Deficiencies

With this experience, I have learned that there is no one easy answer for all as far as dosing goes. Replenishing thiamine requires careful rebalancing of other vitamins and minerals, as most people have multiple nutritional deficiencies. Prior to supplementing with TTFD, my labs showed Vitamin D deficiency for over ten years and low thiamine since 2015. If not for the COVID environment, I would have been hospitalized for IV thiamine treatment and looking back now, probably should have been.

I hope my story here can in turn help others find answers which sadly so many Western doctors seem to miss. Nutritional knowledge is barely taught in medical school. I hope that changes, as malnutrition is often the root cause of many diseases. I know all too well how frustrating it can be to go from doctor after good doctor who only know what they are taught: “treat symptoms with drugs.”  Sometimes, it takes one’s own persistence, research, and being proactive to regain wellness. Of course, wellness means cleaning up the diet by avoiding processed foods, carbs, and sugar. Recovery takes eating clean, whole organic foods mainly. It means balancing exercise, sunshine and good mental health. It takes looking at your environmental toxin exposures. It means DE-stressing and cutting back on EMF’s. It takes changing your lifestyle but most importantly, listening to your body and allowing rest and recovery and above all, a well-balanced life.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.  

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Sphincter of Oddi Dysfunction (SOD)

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sphincter of Oddi SOD

I have Sphincter of Oddi Dysfunction or SOD, a female-dominant health condition that caused me to give up a successful career as a not-for-profit director, lobbyist, and advocate. I could not parent and spent a year vomiting, in severe pain, and on a feeding tube. I was 90 pounds and the emergency and hospital rooms became my second home. On several occasions, my gastroenterologist said postpartum depression and stress were causing these extreme symptoms. As I was dying I was told to shake it off, just eat, and reduce my stress. Not only was I very ill, I was blamed and shamed for being ill. Though my tests were normal, I knew my body and this was definitely not psychological in nature.

Fortunately, a surgeon friend of my mom’s suggested I be tested for something called Sphincter of Oddi Dysfunction. Having never heard of this disorder, I scoured the Internet for information and bingo! Everything finally made sense.

Gallbladder Removal and Sphincter of Oddi Dysfunction

The year was 1998. I had my gallbladder removed and soon after developed a severe and constant pain in my right side under my rib. After a few tests proved negative results, I was diagnosed with IBS and given a medication that did not work. Since pain medication barely touched the pain, I went without and learned to live with it. Avoiding certain food triggers, breathing exercises, and mindfulness/awareness techniques helped me function each day.

Fast forward to September 2011, three months after giving birth to my third son. I could not keep food down. The pain shifted to the area below my sternum. Later identified as pancreatic pain, it was searing and relentless. Weight was flying off of my 135 pound 5 feet 4 inch frame. For a year, I suffered; until I took matters into my own hands. I traveled from New York to the University of Minnesota to put a name to the mystery condition slowly killing me. There, I had an endoscopic retrograde cholangiopancreatography (ERCP) with manometry—the gold standard diagnostic test for SOD. Sure enough, the doctor told me I had a terrible case of SOD. The frustrating part of this was my doctors back home could have performed this test but insisted on the psychiatric diagnosis.

What is Sphincter of Oddi Dysfunction?

So what is Sphincter of Oddi Dysfunction or SOD? SOD is a condition where the sphincter valves controlling the flow of bile and pancreatic fluids do not open and close properly. SOD occurs most frequently following gallbladder removal (post-cholecystectomy). Symptoms include (but are not limited to):

  • severe upper right quadrant pain
  • pancreatic pain
  • nausea
  • vomiting
  • diarrhea
  • constipation
  • malnutrition
  • unintended weight loss

Sufferers often go undiagnosed or misdiagnosed as it is common for SOD patients to have normal bloodwork, scans, and procedural workups.

SOD and Women

SOD is most prevalent among women for unclear reasons. A culmination of studies published on the NIH website estimate this prevalence to range from 75-95%. However, surveys conducted in 2013 and 2014 by the Sphincter of Oddi Dysfunction Awareness and Education (SODAE) Network showed an astounding 98% of SOD sufferers are women.

I oversee The Sphincter of Oddi Dysfunction Awareness and Education Network (SODAE Network) website, Facebook page, and support group.  As such, I read and listen to countless stories of doctors telling SOD patients not only that their symptoms are psychological, but that SOD does not even exist! Patients either exhaust their savings to travel far and wide to see a doctor who will help them (yes, there are some fantastic SOD doctors out there) or, those who cannot afford that option, are left with no treatment options and in time deteriorate physically and mentally.

Confusion amongst Physicians: Is Sphincter of Oddi Dysfunction Real?

At the center of this “SOD is not real” movement by some gastroenterologists is the National Institutes of Health study—The Evaluating Predictors and Interventions in Sphincter of Oddi Dysfunction (EPISOD) study, which I happened to be a participant in. The treatment at the center of the study, sphincterotomy, showed it did not relieve symptoms in all participants—not that SOD could not diagnostically be proven. The sphincter is cut so it will provide greater access for fluids to flow rather than get backed up. I had this and it did not work for me either. Two months later I had a transduodenal sphincteroplasty–a major abdominal surgery to sew my sphincters permanently open. I am happy to say I am doing well for the most part and consider myself in remission.

Theoretically, if the treatment did not relieve the patient’s symptoms, then the problem could not originate in the sphincter, which was now cut wide open. This makes absolutely no sense. Would we say other diseases measured by symptomology and/or diagnostic methods do not exist when a treatment is found to be ineffective, i.e. cancer, multiple sclerosis, Alzheimer’s, etc.? As we know, many diseases cause secondary conditions. It is quite possible SOD began as a primary condition, but as it precipitated (it often takes years to obtain a diagnosis), it spawned secondary issues like ductal spasms, nerve and/or visceral hypersensitivity, pancreatitis, malnutrition, or gut dysmotility. The original disease did not change. It was always there. However, once the sphincters were cut, the body still had these secondary issues.

Sphincter of Oddi Dysfunction is Real

Rather than spending valuable time recklessly slamming women with SOD and questioning SOD’s existence, researchers, policymakers, and the medical profession should be investing in women’s health, funding research to identify the cause of this condition. By learning the exact nature and cause of SOD, we can then move on to identify and develop effective treatments and preventative measures. Of particular note, is the need for investigating the possibility of a genetic and/or hormonal cause to SOD, since so many sufferers are women.  No such study has been initiated, outside of a prairie dog study conducted in 1994 determining estrogen inhibited sphincter of oddi motility. That is a narrow bit of research on which to base medical opinion.

This article was published previously in January 2015.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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Understanding Female Digestive Problems

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female digestive problems

It is well-documented in research that some digestive problems, such as irritable bowel syndrome (IBS), Crohn’s disease, gastroparesis, and gallstones, are more common in women than men. Others occur equally in both sexes, but affect women more severely.[1] I know far more women than men with digestive issues and wondered why this was so, especially since I suffer from a pancreatic-biliary condition called Sphincter of Oddi Dysfunction (SOD) where 75-95% of sufferers are women.

Female Anatomy: An Opportunity for Digestive Issues

The exact nature of why women experience more digestive problems than men is not always clear.  Though much about these digestive differences is still a mystery, there are two prominent differences: women’s anatomy and hormones.  The ovaries and uterus are located below the intestines in women’s anatomy.  Since the intestines are such close neighbors, conditions affecting the uterus and ovaries may also affect the intestines.

Two examples of this are endometriosis and referred pain. Endometriosis, a collection of built up and shed uterine tissue, can spread outside the female organs. Endometriosis can affect the intestines, where endometrial tissue may cause intestinal blockage. However, it can also spread and attach to other digestive organs as far up as the pancreas and liver though this is rare.  Also, the close proximity of the uterus to the colon may cause a situation of “referred pain” or sensitivity between the two organs. The uterus and colon share central nervous system neuronal activity partly through the hypogastric nerve.[2] Therefore, pain and sensitivity in the uterus can refer to the colon and vice versa.

Cycling Hormones Contribute to Digestive Difficulties

The other prominent difference is in women’s hormones.  In many ways, these hormones work in concert with the digestive system to work properly. The imbalances of estradiol and progesterone can influence the movement of food through the intestines—some by speeding the process up, causing diarrhea, nausea and abdominal pain; and others by slowing things down and causing bloating and constipation.[3]

Estrogens can significantly alter various clinical manifestations of IBS, including changes in motility (intestinal movement) and visceral hypersensitivity (pain).[4] In the case of visceral hypersensitivity, even the slightest pain-inducing alterations in the esophagus, small intestine, colon, rectum, and pancreatic/biliary region can be more painful in women than men.

I and many other women (rarely men) have at one time or another been told by a physician our digestive symptoms were “all in our heads”. This female labeling could not be further from the truth.  Ovarian hormones can alter pain processing by interacting with neuromodulator systems and the emotional system responsible for visceral pain perception.  Estradiol can cause hyper-responsiveness to stress which may promote immune activation and impairments of gut barrier function.[5]  In other words, our hormones may very well be responsible for the onset of these conditions and the exacerbation of symptoms.

Probably the most obvious affect women’s hormones have on the digestive system is estradiol’s effect on the gallbladder.  Women are twice as likely as men to have gallstones because estradiol raises cholesterol levels in the bile and slows gallbladder movement.[6] Female hormones have also been tied to other liver and biliary diseases, along with pancreatic conditions like pancreatitis.

Pregnancy and Progesterone

Women are at higher risk of developing gallstones during pregnancy.  This is because estrogen concentrations (estrone, estradiol and estriol) are high. Pregnant women experience other hormone-related symptoms.  In the first trimester, morning sickness can be debilitating. No one knows the exact cause of morning sickness but hormone fluctuations have long been suspected. Later in the pregnancy, an increase in the hormone progesterone contributes to constipation by slowing the waves of muscle contractions that move food down the digestive tract.[7]  In addition, progesterone causes the stomach’s esophageal valve to relax, causing gastroesophageal reflux disease (GERD), where food and acid move up into the esophagus. Since progesterone relaxes many of our muscles this may be the reason some women with my condition, SOD, find relief from symptoms during pregnancy. SOD is a disorder where the biliary and/or pancreatic sphincters spasm shut causing pain and other symptoms.

What is the Solution?

The long and short of it is there is no one solution. No one size fits all. Everyone is different. I have had surgeries and conventional treatments for my digestive conditions that proved helpful.  However, in many instances when symptoms were not completely disabling, I experienced just as effective, lasting relief through natural remedies and medications. Practicing deep breathing, meditation, yoga, and mindfulness have helped immensely.  Finding the right diet and sticking to it has always been a challenge, but if I eliminate even a few known food triggers, I am much better off. Dieting, stress, anxiety, depression, and exercise can drastically affect hormones—both for the good and bad. Therefore, addressing these factors can help digestion indirectly by “repairing” hormone problems.

Although some supplements and medications may be helpful, be careful. I have experienced horrible secondary conditions and adverse reactions from herbal supplements, medications, and even some vitamins and minerals that purported to aid my digestive problems. Be cautious. Less is more with pills—even the herbal kind.

In conclusion, besides the estrogens and progesterone, there are other female-dominant hormones like human gonadotropic hormone, luteinizing hormone, and prolactin which may affect the digestive system. Studies are sparse regarding the role of progesterone and the estrogens on the digestive system, and almost non-existent for these rarely talked about hormones.  Therefore, research is desperately needed in the field of hormones and digestive health.  I believe once we unlock some of the mysteries surrounding hormones and the digestive system we will uncover a treasure trove of treatments and cures.

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References

  1. U.S. Office on Women’s Health.
  2. Winnard, KP, et al. “Cross-organ interactions between reproductive, gastrointestinal, and urinary
    tracts: modulation by estrous stage and involvement of the hypogastric nerve”. American Journal of Physiology. 2006 Dec;291(6):R1592-601. Epub 2006 Aug 31.
  3. “Digesting It All!” Connections: An Educational Resource for Women’s International Pharmacy.
  4. Mulak, A and Tache, Y. “Sex difference in irritable bowel syndrome: do gonadal hormones play a role?” Gastroenterology Poland. 2010;17(2):89-97.
  5. Meleine, M and Matricon, J. “Review article: Associations between immune activation, intestinal permeability and the irritable bowel syndrome”. World J Gastroenterol. 2014 Jun 14;20(22):6725-43. doi: 10.3748/wjg.v20.i22.6725.
  6. Stinton, L. and Shaffer, E. “Epidemiology of Gallbladder Disease: Cholelithiasis and Cancer”. Gut Liver. 2012 Apr; 6(2): 172–187.
  7. Lingen, J. “The Second Trimester: Constipation, Gas, & Heartburn”. Healthline. March 5, 2012.

This article was published previously on Hormones Matter in September 2015.

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Endometriosis: The Struggle to Find Effective Care

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I have a horrible disease called endometriosis.  It has completely destroyed my life in every way possible.  I am 29 and going through menopause with no children and no chance of having my own children. My body is full of scars from multiple failed surgeries and from unbalanced hormones.

Endometriosis has caused me to feel like less of a woman and has made feel extremely insecure. It has taken all of my energy to focus on getting through the pain, rather than taking the time to enjoy life and figuring out who I am besides a woman with endometriosis. I have not been able to lead a normal life due to the extreme chronic fatigue and daily unbearable pain I have suffered since the age of 15.

Several Years of Misdiagnosis

At 15 I was misdiagnosed with irritable bowel syndrome (IBS), which complicated my chances of receiving an early proper diagnosis of my endometriosis. It started out with heavy painful periods, accompanied by washroom issues that kept me from school a couple days to a week at times.  It then escalated to stabbing, throbbing pains in my abdomen as well as a crushing pressure type of pain in my legs on a daily basis that would just drop me to my knees and render me incapacitated. The pain was so bad that just putting on and wearing clothes was painful. Just the slightest touch or brush of clothing or anything to my abdomen would increase the pain level.

I had several visits to the hospital due to immense pain that ended in the dispensing of unnecessary prescriptions related to IBS. I was not given the proper examinations or tests to determine my actual underlying problem. It was not until I was 18 and another regular visit to the hospital that they finally believed there was something else that was causing my pain. They had figured I was 5 months pregnant due to an extremely distended abdomen. Despite telling them it wasn’t possible because I had not been sexually active, they still gave me a pregnancy test, which did indeed come back negative. An emergency ultrasound showed an endometrioma cyst that was almost 9 inches in diameter containing blood on my right side and a 2 inch cyst on the left side. I had emergency surgery in which the larger cyst, my right ovary and tube were removed immediately.

Finally, a Diagnosis

I was diagnosed with stage 4 endometriosis. One of my many doctors had assumed that the endometriosis had been growing since puberty at the age of 9. Other doctors believe I could have been born with it. Once diagnosed, I went through every type of medical and alternative treatment, as well as failed surgeries, and failed cyst drainings.

My endometriosis kept coming back and started to cause even more damage. I ended up with another very large cyst on my left side. The cyst had become so large that it had physically pushed some of my organs out of place and had begun to crush others. I also had adhesions–web like tissue that had begun to bind my organs together and to the cyst.

Trying to Find Effective Care

I went through several doctors, who in the end had done all they could for me. They told me that they were not skilled enough to deal with my case, and so I was passed on to the end of the line in my city, which was cancer care.  They offered me a hysterectomy and removal of my last ovary, but not removal of all of my endometriosis, because they told me that was impossible to do. They told me that this surgery probably wouldn’t help, they said it was the only option I had left.

It was around this time that a friend and I had decided to start a support group because we felt so alone and frustrated with the lack of options and awareness in our province (Manitoba, Canada). We found out that there was a surgical method called excision that if done properly can remove most if not all of the disease and have little to no recurrence. This type of surgery was not offered by any surgeon in Manitoba.

Excision Surgery in Mexico

I decided to look into these specialists around the world. I ended up speaking with some in Canada, the U.S.,  and Mexico. I had been approved by Manitoba health insurance to see a specialist outside of Manitoba because of the severity of my disease. However, the wait was too long so I ended up going to Mexico instead. I had a 6 and a half hour excision surgery which resulted in the removal of my last ovary, but I did not need a hysterectomy and was able to keep my uterus. I have been pain free for almost a year now, but I am now dealing with the effects of surgical menopause at the age of 29. Even though the pain is gone I will constantly live with the damage that endometriosis has left me with.

Facilitating Support, Education and Awareness

I have been dealing with endometriosis symptoms and its effects for more than 11 years.  It wasn’t until a few years before my last surgery that I was able to form a strong support system. Knowing what it felt like to go through most of my journey misunderstood, alone and confused, I have vowed to spend as much time as possible spreading awareness, education, and bringing women together so that no one has to go through what I did alone.   I started an endometriosis support group in Manitoba with a friend of mine called W.O.M.E.N (Women of Manitoba Endometriosis Network).  Recently we have also come together with The Endometriosis Network Canada to have our very first awareness day in Winnipeg on May 7, along with 16 other cities across Canada.

From what doctors have told me, had I been diagnosed earlier and had the proper excision surgery I probably would have been able to have children, and would not have had to go through so much suffering and unnecessary  treatments. The pain of the disease may be gone for me but I will never be able to forget what is has done and taken away from me.

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