In 2011 a mother called me and asked whether I would be able to help her 14-year old son who had been diagnosed with eosinophilic esophagitis. Because this disease had only been recognized in the past two decades I had to confess that I had never heard of it. Because I used only nutrients in therapy, I confessed my ignorance but that I was willing to have a shot at it. Obviously, the first thing that I did was to see what had been written about this newly recognized condition.
Eosinophilic Esophagitis: Inflammation of the Esophagus
The part of the gastrointestinal tract that is most commonly affected by this inflammatory infiltration is the esophagus (esophagitis), although it has been recorded in other parts of the intestine when it is known as eosinophilic enteritis. Eosinophils are specialized white cells that have a role in inflammation. They have this particular name because they stain with a dye called eosin (the postfix phil is derived from the Latin word for love) making it easy for a pathologist to recognize their presence in tissues.
Eosinophilic esophagitis (EoE) is now by far the most common form of eosinophilically infiltrated gastrointestinal disease. It represents the most recent form of food allergy, and its control by avoiding offending foods has increasingly appeared as a therapeutic approach. It is often poorly responsive to therapy and there is no commonly accepted long-term treatment. The diagnosis has to be made by endoscopy and it is distinguished from other causes of inflammation by finding eosinophils in the inflammatory area.
A Complex Medical History Misdiagnosed as Psychosomatic
The medical history of this 14-year-old boy had begun in infancy with recurrent ear infections and asthma, entailing many doctor visits. But he also had many confusing symptoms throughout childhood other than the chest pain and swallowing difficulties that might be expected from inflammation of the esophagus. In fact, these symptoms had been thought of as psychosomatic until endoscopy was performed when he was 8 years old and the esophagitis was discovered. From that time on, he had been examined repeatedly and had received conventional treatment without success at several prestigious institutions. He came to my attention 6 years after the diagnosis had been made.
His early history of repeated ear infections and asthma were important because both of these conditions are now known to be related to inefficient oxidative metabolism. Eosinophils are associated with asthma in some cases. The symptoms that had been considered to be psychosomatic included a dramatic response to any physical pain producing stimulus (hyperalgesia), emotional instability, unusual fatigue, headaches, dizziness, panic attacks and increased sensitivity to both sound and light. For example, when I came to the physical examination he would scream when I touched his abdomen and the abdominal muscles would become rigid. Another intriguing symptom was that he coughed in his sleep (an exaggerated cough reflex) without becoming awakened and he also experienced nightmares. He had also been diagnosed by a psychologist with ADHD and OCD. But on physical examination, I also found many intriguing signs that indicated autonomic nervous system dysfunction. The medical history also indicated that he was addicted to sugar, and alcoholism was widespread on both sides of the family, both being related to thiamine metabolism. People who have read some of the posts on this website will be familiar with the association of thiamine deficiency with sugar ingestion and alcohol.
A Family History of Alcoholism and Thiamine Metabolism
Because of this family history of alcoholism, his addiction to sugar, and the known relationship of thiamine deficiency with autonomic dysfunction, I used the blood test known as erythrocyte transketolase and I was not too surprised to find that it was extremely abnormal, proving a severe degree of thiamine deficiency or abnormal thiamine metabolism. He was treated with a series of intravenous infusions of water-soluble vitamins that contained thiamine hydrochloride. Although his symptoms began to improve, the transketolase test became much more abnormal, suggesting that thiamine was not being absorbed into the cells that needed it. Thiamine tetrahydrofurfuryl disulfide (TTFD: Lipothiamine, a derivative of thiamine that is absorbed more easily because it does not require the complex mechanism that is required for the absorption of dietary thiamine) was substituted for the thiamine hydrochloride with the result that the transketolase improved greatly.
Symptoms continued to improve but the most surprising thing that happened was the tremendous growth spurt that occurred throughout a year of treatment. Body weight at the beginning of treatment was 105 pounds, placing him in the 25th percentile. After one year of treatment his weight had increased to 122 pounds (+17#), placing him in the 50th percentile (e.g. male or female members of a school class). His stature increased in the same time period from 64.5 inches to 68.5 inches (+4”), raising it from the 50th to the 75th percentile. Percentiles are used in growth charts to indicate the normal height and weight of an individual as compared with subjects of the same age. For example, the fiftieth percentile would mean that 50% of a given similar group (e.g. a school class) would be taller/heavier and 50% shorter/lighter. For normal height and weight a subject remains in the same percentile throughout growth. A “jump” of this nature is extremely rare. It is unlikely that he would have been considered growth retarded if this dramatic acceleration had not occurred. He would have just been regarded as a “shorty”.
As reported in several posts on this website, dysautonomia is used to describe changes in the functional controls of the autonomic (automatic) nervous system. There are two branches to this system known as sympathetic, the action system, and parasympathetic, the “rest and be thankful” system. The first one is activated by any form of stress that includes a mild degree of oxygen lack (hypoxia) in the lower part of the brain or its equivalent from lack of thiamine and known as pseudohypoxia. There is also a genetically determined disease known as Familial Dysautonomia (FD) in which growth retardation is a constant feature. Although FD is a genetically determined disease, it is the resulting dysautonomia that causes growth failure. This suggests that the long-standing dysautonomia in this patient, due to energy inefficiency in brain cells caused by the pseudohypoxia of thiamine deficiency, was responsible for growth failure. Restoration of thiamine concentrations caused improvement in energy metabolism that enabled the growth spurt to take place.
Conclusion: Inflammation is a Defensive Response
Inflammation is really a defensive response made by the body to some form of attack. In the case of this disease it appears that certain foods act as the attacking agent, hence the term food allergy. The inflammatory reaction is kept under very careful control by the brain acting through a nerve that runs the entire length of the intestinal tract. If this nerve fails in its suppressive action, the inflammation gets out of control. For the normal function of this nerve thiamine is a necessity. But thiamine deficiency, because it results in pseudohypoxia, also activates the sympathetic branch of the autonomic system and was responsible for the many symptoms that had been previously described as psychosomatic. It is very likely that the huge ingestion of sugar in the United States is responsible for thiamine deficiency that results in manifestations of disease that vary in their presentation according to the particular cells affected by the deficiency. Because of the family history I strongly suspect that there was a genetic relationship that created this boy’s sensitivity to foods, particularly sugar, making thiamine deficiency much more likely. It is of course possible that this is but one cause of eosinophilic esophagitis/enteritis. It suggests however that some form of pseudohypoxia (other than thiamine deficiency) is the root cause of the disease and that the inflammatory response gets out of control because of autonomic dysfunction. This case is now “in press”.
Lonsdale D. Is Esosinophilic Esophagitis a Sugar Sensitive Disease? J Gastric Disord Ther 2016;2(1):doihttp://cbcdoi.org/10.16966/2381-8689.114.
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Must also consider chronic infections as a cause of EOE. Eosinophils can infiltrate the gastric mucosa attempting to clear an infection that cannot be cleared and this can backfire over time and create a hyperimmune response. Things like chronic lyme, bartonella, candida and EBV can contribute
Thank you Dr Lonsdale for your work!!! I will spread the word for sure!
I started my 11 yo son on 100 mg of lipothiamine daily on Saturday and Tuesday, we’re already seeing benefits! I was hoping you may be able to advise as to the dosage as I’d like to give him the best dosage to improve his deficiency. Are there any side effects concerns?
Again, thanks for your commitment to treating the cause and not just the symptoms!
Stick with present dose. No side effects. Be sure to stop sugar in ALL its forms, including soft drinks, even with sugar substitutes
Very interesting insights in here. We are dealing with similar issues and may see a diagnosis of EoE (pending endoscopy of the esophagus) and I am seeing patterns that are inter-generational. I won’t go into detail, but I have some questions that I hope to find clarity on:
Understanding that there could be a different causation for EoE for different people, how do we reconcile which of the 2-4-6-8 foods that are commonly removed to treat EoE with a possible thiamine deficiency?
i.e. if egg, legumes, and rice are foods (foods considered high in thiamine, but also in the list of foods removed from diets to deal with EoE) that someone removes from their diet, and responds positively in terms of their EoE, how might that inform one’s understanding of their personal relationship to a thiamine deficiency? Would such an instance indicate that thiamine deficiency is not the cause, or would someone who has difficulty synthesizing thiamine have certain negative symptoms when consuming high thiamine foods BECAUSE of their inability to synthesize it? Does thiamine present itself in different forms in different foods that might be easier or more difficult to synthesize?
Let us have a clear understanding. The post reported the case of a 14-year-old boy who was a sugar addict. He had had many years when his symptoms were considered to be psychosomatic,(actually typical of thiamine deficiency). The question asked is this: is the ingestion of sugar THE cause of EOE or A cause. It cannot be answered from one case report. However, I would like to emphasize several items.
1. The ingestion of sugar precipitates thiamine deficiency.
2. Thiamine deficiency results in deficiency of the neurotransmitter known as acetyl choline.
3. This neurotransmitter is essential to the function of the nerve that enables the esophagus to function and is essential to many brain functions. Its absence is thus responsible for the esophageal symptoms as well as those that are incorrectly labeled psychosomatic.
4. The inflammatory reaction in the esophagus is the RESULT, not the CAUSE of the disease.
It is virtually certain that this will be confusing to many readers because we are all programmed to think the same way. Current thinking would conclude that the primary focal point of the disease is the inflammation of the esophagus and that the symptoms are secondary mental reactions to the stress of the symptomology
I posted under another article but my eyes widened when I saw the discussion of EoE. Never have had a gastroendoscopy but for the past 8 or 9 years I’ve been experiencing choking, gagging and occasional vomiting from the choking or gagging. It feels as if my esophagus has become hypersensitive. Even water can induce choking. And, like many other posters, I started back consuming sugar, which I’d stopped eating over two decades ago. Also resumed eating eggs, wheat and dairy. My health had been deteriorating from untreatable bipolar illness and I just stopped caring what I ate, though I knew diet has a profound influence n the body and brain. My paternal grandfather drank, was afflicted with depression and killed himself when I was a child. My father had dysthymia and had been a drinker until he got married.
I have a large bottle of thiamine hcl, as well as a bottle of bentfotiamine from an earlier experiment. Now I know I need to eliminate sugar and foods to which I’m still sensitive. I’ve been a lab rat for science from the time I was hospitalized for the bipolar illness at the NIMH. I enjoy a challenge and the challenge is to reclaim my health and my life. Thank you, Dr. Lonsdale, for all your research and advocacy.
I gather that you are assuming that your symptoms are due to EoE and that my article suggests that sugar is the only cause. The presentation of the case of one patient does not mean that sugar sensitivity is the only cause. Neither does your description of symptoms indicate that EoE is associated, because they can be from another source. On the other hand, I have become aware that a family history of alcoholism is frequently associated with sugarholism on a genetic basis.I was intrigued by the fact that you had untreatable bipolar illness, suggesting that you may have been thiamin deficient even at that time. Most practicing physicians seem to be completely unaware that the brain is a “machine” and its “fuel” has to be married to the requirements of the “engine”. Taking sugar is like choking the engine of a car with too much gasoline. Thiamin acts as a “spark plug”. I would strongly suggest that you obtain upper endoscopy through your physician for proper diagnosis. If it is confirmed as EoE, then you should attempt to find out whether you are thiamin deficient. Otherwise you are taking on a personal experiment for which you can be solely responsible.
Thank you for your reply, Dr. Lonsdale. Over the past 26 years I’ve been on 30 psych meds of all classes, including low dose naltrexone and Pitocin(oxytocin) compounded nasal spray. ECT has been suggested and I’ve rejected it. I’ve also been on various forms of prescribed testosterone because of erectile dysfunction and low libido. I had intestinal surgery two days after birth and have a history of food sensitivities, migraines since I’m three, Tourette Syndrome since I’m three, anxiety attacks, panic attacks, phobias, depression and suicidal feelings. I overcame the anxiety attacks and phobias in my early 20’s and managed to live my life, though I had yearly depressive episodes that would last three months. Still, I worked, had friends and girlfriends but life changed at 39 when my father was diagnosed with pancreatic cancer. He was gone in three months and my mood swings began after his death, worsening for a year, at which point I was screened by the NIMH and admitted as an in-patient.
When I was discharged I was stable, though I became refractory to the medication that I was taking. After several trials of different medications, my doctor agreed to see how I do medication free, except for Cytomel, which my psychiatrist prescribed for sub-clinical hypothyroidism. I was married, working in a stressful job, but my life was working. I actually was happy about my life, which I hadn’t been in many years. Then, after thirteen years, the bipolar returned and I could no longer work full time. I switched to another line of work, doing it part time but my physical and mental health continued declining. I also no longer responded to Cytomel. I’ve been to many doctors and no one can figure what’ has gone wrong. Thus, I experiment on myself. I understand that it’s unwise to self-treat, let alone, self-diagnose, and I don’t believe that I know more than a doctor but I’d gladly stop self-treating if I found a doctor who wasn’t reluctant to deal with a challenging case.
Very interesting read. I have been diagnosed with EOE, IBS, depression, general anxiety, panic disorder, with high HDL, triglycerides, migraines, and rosacea. Also had costocondritis for 2 years. I frequently would have anxiety about choking on food and chest pain so this all makes complete sense.
I am now wondering if sugar could be the underlying culprit for all of the above. I’ve cut out sugar completely for 3 days now and am curious as to when I will start to feel a bit better. I understand the damage was not done over night and it may take some time.
Have you heard of a link between EOE causing migraines?
This is an important post because it illustrates how the present medical model is completely wrong. Note that EOE, IBS, depression, anxiety, panic disorder, migraines and rosacea are regarded as being separate and distinct diseases. The chances of one individual having seven separate diseases all at the same time, or occurring over the years separately, seem vanishingly slim. If I answer that all of them have a common cause, it shakes the very foundations of modern medicine. Furthermore, Mary is concerned about “choking on food and chest pain” symptoms that I have encountered in patients frequently.Yes, Mary. You are quite right that sugar is the causative agent and you are seriously thiamine deficient as a result. What this deficiency does is to produce actions in the brain which are known as dysautonomia.The autonomic nervous system is automatic and controlled by the lower part of the brain, enabling us to adapt continuously to environmental stresses that represent living in the world. When this goes haywire it is called dysautonomia. You have to understand that oxygen deprivation or pseudo-hypoxia are interpreted by that part of the brain as a dangerous life-threatening situation. The fight or flight reflex is designed to activate action. If you were sleeping in a room that was gradually filling with a toxic gas such as carbon dioxide, that reflex would be activated. You would wake up and get the hell out! The trouble is that when this pseudo-hypoxia from thiamin deficiency is prolonged, it produces dysautonomic symptoms that vary from day-to-day and are usually treated as “psychosomatic” as though the patient is inventing the symptoms for some selfish motive.”Why do I have heart palpitations, sweating at night, insomnia, abdominal pain, diarrhea alternating with constipation, migraine headaches”? Answer: “we can’t find anything wrong, it must be all in your head”. The irony of the answer is that it is indeed in the head but does not have Freudian origins.We have seen that one published case of EOE was proven to be related to his sugar addiction and thiamine deficiency. IBS and migraines are both symptoms of dysautonomia. Panic attacks have been shown to be due to oxygen deprivation or pseudo-hypoxia. How can I explain all this? When you take sugar, thiamine metabolism is overwhelmed and the ability to create energy for cellular function is endangered. The thiamin concentration in a patient’s blood may be perfectly normal because it is the ratio of empty calories to that of thiamin concentration that decides the issue. In other words your thiamin intake may be perfectly normal for a healthy diet, but the empty calories alter the relationship completely.It is often at social activities, invariably marked by empty carbohydrate calories, where the damage is done. The trouble is that it is entirely innocent.”Won’t taking sugar provide me with quick energy”?Deviations in thought processes such as anxiety and depression are due to devious electrochemical reactions in the brain. When I say that I can hear people say “there must be something more to humanity than just chemical and electrical reactions”. I agree, but as a physician I have to try to understand the machinery that makes us tick and how our diet can influence it so much. Mary, go out and tell your friends about this forum. These words are lost on physicians and publishing in medical journals has a very limited value. What patients really need to know is how this kind of thing is so misleading and how they can suffer for years, often being treated as “problem patients”. We have the information. It is not my imagination and we have written a book that is readable by the intelligent public and available on Amazon books. Type in my name Derrick Lonsdale and you will be taken to the ad.
Derrick, informative article, especially the thiamine deficiency as it relates to pseudohypoxia and the resulting inflammation. But I will say that say that your statement:
“It is very likely that the huge ingestion of sugar in the United States is responsible for thiamine deficiency that results in manifestations of disease that vary in their presentation according to the particular cells affected by the deficiency.”
Is quite a leap, there might be a relationship and worthy of study but that is quite the jump based on the evidence pertaining to one individual. Is this worthy of a study or maybe picking up the phone and calling some of the folks over at Cincinnati Center for Eosinophilic Disorders and ask what they think. My son was diagnosed very early way before he was eating candy or anything that would cause a sugar based thiamine deficiency. Also, I would like to call out that there are tons of folks that have figure out the trigger food that seems to cause pseudohypoxia (if that is the cause of inflamation) and sugar isn’t it nor does it seem to exacerbate the disease.
We have eliminated all the major allergy food(top 8) and the EoE reactions have stoped. My son can now literally eat a bowl of sugar and nothing will happen. It is quite possible that you patient’s trigger food was sugar. Even further it might had more to do with the how that sugar was sourced (cane, corn, etc..) or any contamination at the production level.
Also, have you read the article on calpain 14?
I would love to see a followup article on what you have learned since the posting of this article. I appreciate your attention to this disease I would love for my son to at some at some point have the ability to experience a wide variety of foods along with all the kids that survive via enzyme potions pumped into their gut.
This comment requires a detailed reply. In the first place I never said that sugar was the ONLY cause of EoE. It was a case report that indicated a completely new approach to a very modern disease. It indicated that the nervous system was at the root cause of the esophagitis. This is because we now know that it is the nervous system that controls the process of inflammation. If you read the case report again, you will notice that for some eight years this boy had symptoms that were interpreted as psychosomatic. He had been seen by Dr. Rothenberg in Cincinnati with whom I communicated at the time that I treated my patient.He said that he already had a research agenda. He had tried all the orthodox treatments with no success and indeed he had been studied by a number of prestigious institutions.You said that my line of reasoning:
“It is very likely that the huge ingestion of sugar in the United States is responsible for thiamine deficiency that results in manifestations of disease that vary in their presentation according to the particular cells affected by the deficiency”:
was based on one case. The book written by myself and Dr. Marrs “Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition” indicates that this is not true. I have seen literally thousands of patients in which thiamine deficiency was proved by laboratory study. Many of the symptoms had been classified by other physicians as psychosomatic. The trouble with current medical thinking is that this kind of disaster simply does not happen in America. Each symptom is treated as a symptom by a prescription drug without recognizing that it is an underlying nervous mechanism due to faulty chemistry. Yes, it is true that thiamin deficiency is not by any means the sole cause of what this commentator describes as “pseudo-hypoxia”. In addition littlle thought has been given to the input signal to the brain from the tongue in appreciation of sweet taste. To say that this boy can literally consume a “bowl of sugar and nothing happens” is exactly what I would expect. The mechanism is insidious, complex and mediated by body/brain and brain/body signaling that involves chemistry. Medical history is full of paradox and to begin to accept that this kind of approach needs to be researched requires that a researcher examines the evidence thus far accumulated and extends it.
Thank you for all your articles on thiamine. Another sugar addict here! My mother was also a sugar addict and I started sugar early in life. I’ve also had periods of high alcohol intake. I fit a lot of the dry beriberi symptoms and have dysautonomia and heart palpitations.
I don’t have easy access to testing so I am following your protocol to take lipothiamine and cut added sugar, processed foods and crisps.
A couple of things I’m curious about… a lot of people are promoting paleo and ketogenic diets. Do you see either of these dietary approaches helping restore thiamine and transketolase transport?
What is the value of including ALA in the lipothiamine formulation? I am finding it quite stimulating. I have read that ALA uses up B vitamins according to Dr Burt Berkson. Is this true?
The so-called Paleo diet is based on what our ancestor cavemen ate. The ketogenic diet is an artificial diet designed originally to treat seizures in children. It’s based on high fat and low carbohydrate. No need to do that either. When I asked the CEO of Ecological Formulas whether the lipothiamine pill could be enteric coated, he said that he already had a pill with ALA in it and did I object? Since ALA actually works with thiamine, of course I had no objection. I have known Dr.Burt Berkson for years. I rather doubt that he said that about ALA but I may be wrong. The main issue in all of this is getting rid of the sugar. It is the most dangerous commodity because it appears to be so completely innocuous. It[s damage is a slow process that makes its first appearance as “psychological” or “psychosomatic” symptoms that are treated as such by physicians
Thank you for your advice! You are so right with the misdiagnosis. I was diagnosed with bipolar but after all the medications gave me as side effects I went to a different psychiatrist who said that my symptoms and reaction to medications strongly suggested the diagnosis was wrong. Of course, this was after 10 years of trying multiple antidepressants, lithium, sodium valproate, antipsychotics and benzodiazepines so it took several years after stopping pills to get my mind back. No medication now for 15 years and no signs of any “episodes”.
I just want to say a big thank you for all of these EoE articles. For the past 7 years I’ve been having food impaction especially with meats and alcohol. This past Saturday I ended up in the ER with a severe choking fit (I was eating toast), but the medical personnel made it seem like I was crazy. “There’s nothing in your throat according to the soft tissue x-ray and there is no swelling.”. I can’t eat anything. Even water gets stuck. I asked if it could be a food allergy and they said no. Now that I look back to my childhood I would get random hives the size of welts, asthma attacks as an infant with the end result of an adrenaline shot. I’ve always had anxiety but attacks started at 17-18 years old… It felt like one side of my heart would fill up and there would be a delay to release the blood, resulting in extreme anxiety. I’ve always been big and can remember eating like crazy as a child never feeling satiated.
Eventually when I got older and researched I started taking a b vitamin complex with occasional zinc and magnesium… Then I tried a curcumin supplement and my liver area was on fire so i discontinued that. Just recently in may I had a miscarriage. I had a feeling its because I’m not in optimal health. I am a sugar addict. My hair is thinning and at the poorest its been and my nails are flaky. I’m already allergic to most furry animals and dander and everything it seems. I haven’t eaten for a week because everything makes me feel like choking. I feel defeated. But with the help of your articles Doc I can find light. The worst part are these other doctors… There have been plenty of times where I have asked could “A” be related to “B” because they are connected and its always a no. Even when I went to the GI doctor yesterday and asked could this be a vitamin deficiency he hesitated and seemed stumped. He said maybe it is an auto immune disease… And that was that. What a joke. I’m glad there are logical people like you who really try and help. Thanks again!!!!!!!!
Frankly, I think that your major clue is confessing that you are a “sugar addict”. Even though it will probably be difficult to stop, your addiction is the underlying cause. This automatically induces progressive thiamine deficiency and will ultimately lead to neurodegenerative disease of the brain. Unfortunately these symptoms are almost always diagnosed as “psychosomatic” and you are treated as a neurotic invalid, whereas the solution may well be within your grasp. You need massive doses of thiamine, magnesium and a multivitamin, but they won’t work unless you discontinue sugar. Is there a family history of alcoholism?
Yes on both sides of the family. My grandpa was a “raging” alcoholic with schizophrenic tenencies. He was never properly diagnosed. My mom and dad are both alcoholics. My mom has a lot of things wrong with her now. Fibromyalgia, degenerative disc disease, b-12 deficiency, feels extremely full after a couple of bites of food. Sometimes she never remembers a word you say to her and she’s only 49!
I went to the store today and got some Outshine veggie and fruit popsicles since I can’t swallow whole foods yet. Its made by nestle so in the back of my mind I know its non GMO and “all natural” “no added sugars” advertising is most likely a sham. I Also bought some green tea and a throat soothing one. I’m at a loss for what to eat. I’m scared to even try any solids because of that choking feeling. Its frustrating. So I’m going to buy the lipothiamne. What trusted brand of magnesium and vitamins do you recommend or prefer? Maybe just a soak for magnesium like was suggested to another commenter? Can I get a good vitamin in liquid form until I know its safe to swallow? Thanks again. I’ve really learned a lot here and still am. I’ve been reading all week all the different articles to soak the info in haha. I appreciate it!
This is a perfect example of thiamine deficiency disease. In this case there is a genetic background that I believe few people are aware of. I remember the mother of a patient of mine who took her first alcoholic drink at the age of 16. She knew instantly that she was an alcoholic. If there is a family history of alcoholism in your family, be acutely aware of the dangers of either sugar or alcohol. Notice the number of diseases in Rebecca’s family, all caused by defective energy metabolism. There is a proverb “those that forget history are condemned to repeat it”. The history of solving the problem of beriberi, the classic thiamine deficiency disease that had existed for literally thousands of years, turned out to be quite simple. Eat natural food. We are indeed repeating history and the crass ignorance existing in the medical profession reinforces the logic of the proverb. Reading the history of the solution in this disease should be mandatory in medical school.This person cannot possibly get better without completely getting rid of sugar and alcohol and taking huge doses of thiamine and magnesium. Thiamine deficiency is producing both physical and mental effects because of its devastating action in the brain.Notice that Rebecca bought popsicles, labeled “all natural”. How could a popsicle be “all natural”? Millions of people are being taken in literally by lies that are designed to sell a product. The consequent suffering is unimaginable!There is, however, a mental block in the minds of physicians. They firmly believe that vitamin deficiency could not possibly occur in America. As a consequence of this they are not educated adequately in medical school. If and when I try to point out that a given case is transparently obvious as the polysymptomatic projection of thiamine deficiency, I may receive a polite smile, but I am immediately classed as a lunatic. Nevertheless, perhaps a few inquisitive physicians may do their own research and find that there is a tremendous amount of information even in the modern medical literature. It is a slow process, but all the sick people that are reporting on this website who literally live in “hell” because of medical ignorance, that gain a little improvement by such simple methods, should be examples, each of which should light a small fire.
I forgot to add that I am cutting out the sugar and just going to try to make veggie and fruit smoothies from scratch until it feels comfortable to swallow. I’m going to focus and give it my all. I will update when things start going well!
Don’t be afraid to add some healthy fats such as butter, olive or avocado oils, coconut oil, heavy cream (or any other fats which you can eat) to your smoothies. You appear to need the calories. There is no downside from a health perspective. Just avoid all vegetable oils such as soy, corn, sunflower, canola, safflower,etc.
This is a link to a medical paper discussing an unusual relationship bw schizophrenia, bipolar disorder and microbes in the Nasipharnyx mouth and gut compared to a normal (= not having dx of schizophrenia or bipolar disorder) population. For some reason, that i am having a hard time articulating but I’ll try, the article excited me in how it could be related to EoE. The current info/ studies are sparse but the study definately points to a relationship microbes, gut flora and fauna inflammation(lactibacillus i believe was 400 x higher in schizophrenic population) and these two mental disorders. It made me think of ny daughter who has EoE so i googled to see if there was any evidence of a link bw bipolar/ schizophrenia and EoE. The reason i did so was bc of the similarities i recognised with EoE in the article and the need for further studies on microbes in a adolecent population for comparison purposes. I thought it would be interesting and beneficial for both sides to access EoE patients fpr microbe swabbing since thats done routinely anyway during the endoscopy(especially bc they both have a higher incidence if adhd and arthritis, digestive enzyme issues.wacjed out immune cells) to see if there is a higher prevalence of bipolar disorder and schizophrenia in the EoE population as they age and how the disorders relates to microbe population.The reasons i wondered this are bc I recognised several similarities in the symptoms she has or other kids with EoE have. she has severe constipation foul smelling bm, which is helped with digestive enzymes and probiotics, she also has adhd, sound sensitivity and trichitillomania. Also in EOE, (like in schizophrenia and bipolar disorder)rheumatoid arthritis is more prevelant. and It seems like they could all be a metabolism endicrine mitochondria thing somehow tied to haywire gut bacteria, a virus, or may be like you suggested sugar or thiamine disregulation. I find it exciting in a way that theyre breaking ground that could possibly lead to prevention or a cure for all of the above. My thinking may be way off but i thought it was worth mentioning and I wondered what your thoughts are?
As you can see below, I have copied some of your words.
“she has severe constipation foul smelling bm, which is helped with digestive enzymes and probiotics, she also has adhd, sound sensitivity and trichitillomania. Also in EOE, (like in schizophrenia and bipolar disorder)rheumatoid arthritis is more prevelant. and It seems like they could all be a metabolism endicrine mitochondria thing somehow tied to haywire”
You are quite right. Everything in the body is connected to everything else and the bacteria play a very important part in digestion. However, is the bacterial mess the cause or the effect? I would be willing to bet that you daughter is a sugar addict and that she is severely thiamine deficient because of the ADHD, sound sensitivity and eating her own hair. A patient of mine some years ago had to have a hairball removed from her stomach because of accumulated hair. I’m afraid that we are causing our own diseases wholesale,
Hello Dr. Lonsdale, my name is Kelly, I’m the mother of a recently EOE diagnosed 14yr old daughter. My daughter sounds a lot like your patient in this case, a lot of similarities. She prefers to drink root beer constantly because of the sugar content. She prefers only pancakes for breakfast with a lot of syrup. She doesn’t always get these things but she begs for them endlessly. Her G.I. doctor has put us on the elimination diet with no nutritionist to oversee her diet. I fear she is lacking certain vitamins. How would you suggest me going about asking for specific blood tests to be done to show she is not lacking a certain nutrient?
You will find your answers in the various articles on this website concerning EoE. You also need to look at the many articles in relationship to thiamin deficiency. It would then be very obvious to you that your daughter is unequivocally expected to be thiamin deficient. Why do I say this? It must be obvious to you that the root beer and pancakes with syrup are feeding her addiction to sugar. If you put two and two together, you must take the severe disciplinary action of absolutely preventing her taking root beer, syrup on pancakes and, in fact anything sweet. I guarantee that it will not be easy, but the fact that you have given me strongly support that my article in the medical literature is a correct assessment of a common cause of EoE Another thing that happens with thiamin deficiency is that children become intractable, difficult to discipline and emotionally labile. They can be the terror of the household and the school, while all the time he/she is completely innocent of what is happening. Conventional dietary measures in this disease and swallowing hydrocortisone, the usual and customary treatment for this disease, simply do not work. You need to show my article to your physician and if he does his own research he will come across many articles to support the idea. Unfortunately, you are likely to meet a complete unacceptedness and even laughter “at your stupidity and innocence”. No physician likes to be told that he is ignorant about a condition that is affecting millions and so it is no wonder that such little progress is made in a realization that the medical model that is used at present is simply a catastrophe!
Thank you for this article. What is your recommendation for parents seeking evaluation and treatment for children with EoE with respect to nutritional testing? Is there are certain clinic or practitioner or organization to seek for treatment? My husband is a chiropractor. Is there a test he can order or workshop to attend?
Thank you. My son has EoE and is enduring pain literally every day,
First of all, I suggest that you draw your doctor’s attention to my article which is available by open access. Please note that my patient had many symptoms that are traditionally considered to be psychological. These symptoms were due to biochemical changes in the brain and reflect his high sugar ingestion that was probably responsible for the thiamine deficiency. It took a long time for the esophagitis to develop. If sugar figures in your son’s diet I would recommend stopping it completely although I cannot state that thiamine deficiency is the sole cause of this disease. It may however be an important one. The fundamental question is why people are becoming allergic to food resulting in inflammation. The common occurrence of this newly described disease is certainly proportional to the modern widespread consumption of sugar in all its different forms. Note the extraordinary growth of my patient as a result of his treatment. Is your son of short stature and low body weight?
Hello Dr Lonsdale,
Since you are retired, where do you recommend parents to seek evaluation for deficiencies for their children? We live in NC. Do you recommend seeing a functional medical Dr? orther practicitoner. My husband isa Chiropractor. Is there a test he can order or certification or workshop he can attend? thank you for this article. I hae a 9 yr old literally suffering everyday with pain.
My daughter has Eoe and I have long suspected sugar as contributing to it. When we have gone on low sugar diets such as GAPS or SCD, she does much better. My biological father was an alcoholic and also had schizophrenia, so I’m guessing there is a genetic component. Molly has the MTHFR genetic defect, which is proven to cause difficulties with absorbtion of B vitamins. I’d like to help my daughter go into remission and was just wondering if there is a liquid or powder form of bioavailable thiamine that you know of or if it’s ok to crush the tablets and give them to her? Thanks!
I am appalled by the idea of “a low sugar diet” being covered by GAPS or SCD, whatever they stand for. After all, sugar is sugar and covers sucrose, lactose, fructose and glucose. Lactose occurs in milk, fructose in fruit and sucrose in honey. They are broken down to glucose in the body. There is this mistaken idea that if you load up with sugar, you have what is called “quick energy”. The processing of sugar in the body is a very complex process and when you load up with sugar, there are two things that happen. You get a big shot of internal insulin because the blood sugar rises disproportionately. Mother Nature set the rules and the only source of sugar should be in fresh fruit and vegetables. Although sucrose is in honey, it is processed by the food industry and is not the same as when it occurs in the hive. It is the artificiality of life that is responsible for so much disease because the food industry want your money.
What exact forms of sugar should be eliminated? Simple? Complex like grains? Is Raw honey in a suitable form? What is your take on magnesium oil absorbed through the skin?
All forms of sugar should be eliminated. This includes candy, chocolates, popsicles, carbonated beverages, desserts, cookies and cakes,etc. Even fruit juice should include the fruit fiber. The only way that sugar should be taken is in fresh fruits and vegetables. An excellent source of magnesium is Epsom salts. Throw a big handful of it into a bath and soak in it.
Dr. Lonsdale, would you mind sharing what form of magnesium was used on this patient?
Thank you so much Dr. Lonsdale. This article has been very affirming to what my “gut” has been telling me for quite sometime. My son was diagnosed approx 2 years ago with EoE. (Alcoholism is found on both sides of the family for both of his parents) We have seen multiple doctors, GIs, allergists, and one naturopath. I have shared with each one of them the effect that sugar has on my son’s stomach/influx of symptoms, and have suggested over and over that I believe his EoE is somehow related to sugar intake (which we have eliminated from our diet in any form that isn’t from fruits, veggies, or honey). I have been told repeatedly that an “allergy” to sugar is unlikely. We have had multiple scopes, biopsies, allergy tests, diet changes, etc. The most recent test that we had done–the ALCAT–showed inconclusive results as to which foods cause inflammation and suggests a diet that includes HFCS and many other foods he has had difficulty with in the past. However it shows “no severe food intolerances” whatsoever. Currently we have been told to get the 23 and Me genetic test and follow the suggested diet from ALCAT. Instead, I will be looking for a thiamine and magnesium supplement for my son and continuing our whole foods approach. I can’t thank you enough for posting your article.
Several principles are invoked by this comment. 1. Note that she allows honey. Honey is pure sucrose and is not how the bees prepare it. It is processed and placed in a jar and is a potent source of problems for a sugar sensitive individual. The word “natural” is used throughout the food industry, simply because it sells. Sugar is actually as addictive as cocaine, but has different results. 2. Alcoholism is once again part of the family history. Evidently, because of the genetic predisposition, such an individual is highly sensitive to sugar and a history of alcoholism must be a significant warning. Alarming as it is, this unfortunate mom was told repeatedly that sugar “allergy” was most unlikely. I tell doctors about these principles as much as I can and of course they think that it is nonsense. Unfortunately they fail to remember the biochemistry that they learned in medical school. The practice of medicine for the average physician does not require any special knowledge concerning the complexity of nutrition. They are largely educated by the detail men who sell drugs. 3. There are a number of different magnesium salts available. I have always used magnesium/potassium/aspartate but I recommend contacting a well-established vendor such as “Ecological Formulas” based in California. They sell Lipothiamine, the best form of thiamine as a supplement. 4. I want to state once again that EoE is the result of complex biochemistry and is therefore the result of the disease rather than the cause. Evidently, sugar damages the mitochondria like alcohol and the result that is common to both of them is thiamine/magnesium deficiency. It seems absurd that the solution to this enormous degree of complexity is so simple. We allow ourselves to become sick and then approach someone who is supposed to heal us. The body heals itself. All it requires is adherence to the rules of Mother Nature
My son has EoE and his maternal uncle and great grandfather were alcoholics, as well as his paternal great uncles (2) and great grandmother. How would I go about getting this treatment? Any doctors that have access to TTFD in the states? When he followed a no sugar, very low carb diet and heavy supplementation for 12 months he improved drastically but as soon as the diet normalized his symptoms slowly returned.
You already have the answer and I cannot ever understand why people return to consumption of sugar when it is clear that it undermines health
My 9 yr old granddaughter was diagnosed with EOE at 5 yrs after several misdiagnosis. She lives in Texas and has been on G-tube since and is still at 47 lbs. she has very limited diet. Highest allergy is corn, so sugar has been eliminated. Alcoholism runs in our family, so everything you said, rang so true to me. She has now even developed Vitiligo. She struggles on a daily basis ( bullied at school) and your article gave me hope that we can somehow get a better grasp on this. Her GI does the best he can but we see no real positive changes for her. Any suggestions you may have wound be greatly appreciated. I am attaching link to her video https://youtu.be/OnrFihxiPIo
Alysa’s EOS Journey Thank you So Much for your time.
She MIGHT respond to pharmaceutical doses of thiamin and magnesium.like suggest that you read older posts on this Web site about thiamin
Thank you for your response. What dose would a 9 year old take of each?
Can,t prescribe 100 to 300 MG see your physician
I was diagnosed with EoE two years ago after episodes of dysphagia and also IBS type symptoms. I also have many environmental allergies, ezcema and after additional testing, many food allergies/sensitivities. I did an elimination diet (the Whole 30 Paleo diet) for many months and my doctor put me on prilosec. My symptoms improved greatly and I stopped taking prilosec but over the last several months I have slowly gone back to not restricting any foods and my dysphagia and chestpain/heartburn over the last week has been horrendous. Also, there is alcoholism in my immediate family. I never clearly identified exactly what my problem foods are. Do you have any recommendations for me? Going back to a very limited diet is so depressing but I will do that if necessary. Just wondering if you have any other suggestions.
This is an intriguing article. My son was diagnosed with Eosinophilic Gastroenteritis when he as 17 months old. Prior to that, he received at least 95% of his nutrition from my breast milk, plus he was a very poor eater (later diagnosed as symptoms of Mito and severe autism). He has had a feeding tube since the age of 18 months and thrives because of it.
My question lies in the source of sugar exposure vs. genetic predisposition. I did ingest some processed foods during pregnancy and nursing. However, I never directly let him have sugar with the exception of when fruits would convert to sugar derivatives once in the body.
Also, how far back does the generational gap go when we’re talking about alcoholism? We are talking about a 3-generation gap between great grandparents on both sides of the family tree and my son. Several family members on each side (cousins/aunts/uncles) also have various autoimmune diseases and/or deal with alcoholic tendencies. Is this a chicken vs. egg scenario?
This illustrates exactly what I am trying to portray. I cannot help wondering whether the genetic mechanism is a Mendelian dominant because dominant genes can skip generations. From my own clinical experience there seems to be a very strong relationship between sugarholism and alcoholism. I have not stated that eosinophilic esophagitis (EoE) is ONLY related to sugar, based on one case. There is a lot of evidence in the medical literature, however, that EoE is associated with, if not caused by, dysfunction in the autonomic nervous system and thiamine deficiency will result in that kind of dysfunction. Thiamine is necessary for normal mitochondrial action and that has been shown by animal studies, but there are other causes for mitochondrial dysfunction. Considered generally to be only genetic in origin, there is also lots of evidence that it can be acquired. However, when you get down to it, the treatment for EoE must be directed at repairing mitochondrial function.That can be done through the art and science of nutritional elements. Another bit of new evidence is that low activity laser treatment can energize mitochondria. I intend to place a post on this subject in the near future.
My son has been diagnosed with Eosinophilic esophagitis, as well as Gastroparesis, which appears to be idiopathic. He’s allergic to over 30 foods/environmental allergens, and only has a handful of safe foods, (g-tube dependent for most of his nutrition) so there’s not much we can do as far as diet, making sugar a big part of it. I’m not sure if I’m getting this correctly, but is your recommendation that he stop eating sugar??
My view is that sugar CAUSED the eosinophilic esophagitis in the 14-year-old boy that I described. There is no physiologic need for sugar as we ingest it in the modern world. Glucose, the fuel for our cells, particularly the brain, is derived from the sugar that is found naturally in fruit and vegetables. You are certainly inducing thiamine deficiency. Thiamine deficiency produces an effect in the brain that is exactly like depriving it of oxygen and is known as pseudo-hypoxia. Pseudo-hypoxia makes the brain exceedingly irritable, resulting in high sensitivity to all incoming stimuli, including ingestion of food. I suspect that the food allergy was induced originally by taking sugar. This is a very complex subject and involves knowledge of biochemistry in appreciating its nature. I would strongly suggest to you that sugar must be removed from this diet at all costs. I believe that you are simply fanning the flames.
Dr Lonsdale, My son was diagnosed with Eoe in 2005. When we read this article it rang true to us in every way. He has also been diagnosed as adhd and ocd. He definitely has a overly high attraction to sugar. He is currently top 8 free plus corn. In the last 6 months he has dropped 20 pounds. And he didn’t have 20 to lose. His fatigue levels are super high and debilitating right now. We are desperately seeking an answer. Do you have a suggestion on how to check his thiamine levels and also how to deliver lipothiamine to him successfully? What kind of specialist should we seek out for this type of treatment? We are currently in the Tampa Bay Area in Florida. Are you taking patients? Also did your patient improve with this therapy alone or were there dietary restrictions and steroids as well? Any help would be appreciated. Thank you for sharing your knowledge.
As you probably noticed, this patient received intravenous water-soluble vitamins which contained large doses of thiamine hydrochloride. Because the transketolase test became more abnormal TTFD was substituted and also given intravenously. Unfortunately this very important derivative of thiamine is not available in the United States for intravenous use. I had held an independent investigator license for this product since 1973 and have sent regular reports into the FDA. As my article suggests, there is probably a genetic link that makes these young people much more susceptible to ingestion of sugar. If there is a family history of alcoholism, this genetic link is more likely.
Given your response regarding the lack of availability for the treatment you used, would total elimination of sugar yield some (even if minor) positive results?
Pharmaceutical doses of thiamine in the form of supplements are readily available. Lipothiamine is also available from a US vendor. Removing sugar completely from the diet will result in very slow improvement, but supplementation with thiamine and magnesium will help. Unfortunately, sugar is addictive because it excites the pleasure zones in the brain and it is extremely difficult to get children and adolescents to understand this. Animal studies have shown that sugar is actually more addictive than cocaine. The idea that it gives “quick energy” is false. It’s processing in the body is very complex and it has evolved in line with the consumption of natural food. Our modern era has turned its back on Mother Nature and feeds according to the dictates of what we call the food industry. No wonder there is so much disease.
Wow. This child has all the symptoms of mitochondrial dysfunction. This can be a life threatening condition. EoE is the response of a system diverting resources.
And I wonder if there are any relevant citations? I’m struggling to make the connections the author has.
There is a lot of evidence that mitochondrial dysfunction, long known to be genetic in character, can also be acquired. Relevant citations can be found in my article listed at the bottom of my post.
Could any of this been linked with idiopathic intracranial hypertension/ pseudotumor cerebri? My daughter has been recently diagnosed with IIH last year. She often complains of stomachache too and has chronic constipation. A recent endoscopy showed eosinophils in her esophagus. They also noticed food still in her stomach after 12 hrs of NPO.
Michelle, do you have a gastroenterologist? They can check for gastroparesis and other issues. Food in the gut after 12 hours would cause a lot of pain and then after, chronic constipation. There are osmotic laxatives, but the main issue would be to get her gut attended to. I hope you get some answers! I cannot see how sugar would affect your daughter’s condition. Sugar is essential for basic body functions and has never been proven to produce inflammation. Methylation is linked to some genetic conditions – so see a geneticist to see if this has any bearing on your daughters issues. The information above, is at best as it is presented, quite weak.
Justine, I am afraid you are incorrect in your assertion that sugar has never been proven to cause inflammation. Too much sugar does quite a bit of damage to all sorts of biochemical processes that result in inflammation. We have number of articles on this topic on the blog. Here is one relative to thiamine and mitochondrial function. http://www.hormonesmatter.com/dietary-mayhem-disease-thiamine-choked-engine-syndrome/ Gastroparesis, as you mentioned is also mitochondrial in nature and can be induced by number of mechanisms, medications/vaccines, as well as primary genetics. Damage to the mitochondria, whether primary or secondary (acquired) are very responsive to diet and nutrients. Hence, in mitochondrial medicine a trend towards mitochondrial cocktails of varying supplements to replenish depleted or poorly absorbed nutrients which are necessary to process sugars and fats into ATP. Without those nutrients, mitochondrial dysfunction ensues. Before claiming that the information is ‘quite weak’ please do your homework on the author of the article, the topic itself, and the latest in mitochondrial medicine.
Sugar is not essential for body function. Sugar, as you know, is made up of several constituents. To simplify I just call sucrose, glucose, fructose, etc., sugar. Nordic tribes, such as the Inuit, have never ever come close to sugar in any shape or form and have always been quite fine. There are alternate methods of fuel burning void of sugar (or as in today’s diet with minimal carbs that convert so glucose in the body) for all body functions, including athletic functions of endurance (not that of sprint actions). Most newly discovered aboriginal tribes do not consume any sugar albeit they usually eat some form of starch that convert to glucose in the body, but that is because the majority of the population is made to be “carbohydrate burning” machines rather than “fat burning” (i.e. ketogenic) and that is selected based on what is easily available to them.
You are making a second statement that appears to be incorrect: sugar has “never been proven to produce inflammation.” This statement is very misleading since as of the 21st Century and the later part of the 20th Century, hundreds of studies have been spent on evaluating the types of inflammation sugar is responsible for. This article introduces you to some of the issues associated with eating sugar. This article looks at several scientific studies and concludes that sugar is not only inflammatory but downright toxic because of the way sugar metabolizes. It is important to understand that sugar calories take a very different metabolic avenue from the metabolism of say a potato with its carbs. We also now understand the amount of and types of stress sugar causes in the body, initiating what we call chronic pain and also various immune diseases. Sugar is well know to cause cardiac problems that have always been blamed on salt but are, in fact, caused by sugar. Sugar also causes muscle and skeletal inflammation in test animals. This article summarizes many scientific journal articles that point out the connection of sugar consumption and inflammation.
As you see, there is more than enough evidence that sugar causes inflammation and while I do understand our wanting that to not be true, facts are coming more and more often to the surface showing us what we considered to be true are false and what we considered to be false are true. The primary reason is not always scientific weakness but rather the simplicity of making commercially viable foods available that don’t rot and feed millions, albeit on the long run it may be harmful.
Justine, I am afraid that you are wrong. The intestinal paresis is the result of dysfunction of the vagus nerve. It is more the problem for a biochemist than a gastroenterologist and illustrates the falsehood of the present medical model. The vagus nerve also controls inflammation via the spleen. My article strongly suggests that the dysfunction in the vagus is due to acetylcholine deficiency resulting from thiamine deficiency. Thus the eosinophilic inflammation, perhaps caused by food allergy that is the considered cause of this condition, is not controlled by the normal action of the vagus
The answer depends on whether she is a sugarholic or not. The information that you supply strongly indicates that her bowel problems are dysautonomic in character. It would suggest to me that the vagus nerve, the nerve that goes from the brain and is distributed to the esophagus and intestinal tract is compromised. This nerve is dependent on the neurotransmitter called acetylcholine that is in turn dependent on the function of the citric acid cycle that is dependent on thiamine for its function. The trouble is that giving a set of disease conditions a specific name diverts us from recognizing the underlying biochemical cause. Thus, a given biochemical lesion may be responsible for many different conditions that are presently regarded as separate disease entities. The part of the brain that organizes the functions of the autonomic nervous system is highly susceptible to thiamine deficiency. The easiest way to acquire this deficiency is to be a sugarholic.
I would like to underline the importance of what Derrick said above about the “naming” of a disease and how that may mislead us with respect to the underlying cause.
There are hundreds of examples for this in modern medicine, when a single symptom–take irritable bowel syndrome (IBS) for example–is taken to be a disease. Though even its name indicates that it is a “syndrome” with many underlying factors and causes, most people believe that it is a treatable “disease.” Doctors too will often treat IBS as a disease, even though it is a reaction to an underlying cause that is not that difficult to find.
It would be much easier to eliminate the cause than to find rescue by reducing the symptoms of an otherwise ongoing problem that causes it continuously and thus IBS remains.
It is far too easy to name something a “disease” without giving much thought to what causes it and how to eliminate it.
When ever my daughter eats sugary foods sometimes it causes chest pains nd a stingy rubbery throat
consider the possibility of eosinophilic esophagitis.