GLU1: Celiac Disease & My Story

Celiac disease affects tens of millions of people worldwide. The framing of the disease is that it is effectively of ‘unknown origin’ and without treatment, and the only concrete course of action is to avoid eating gluten for life. The problem is that not eating gluten doesn’t cure the disease, which is paradoxical. This is Part 1 on the topic and principally deals with the known dimensions of the disease itself, while Part 2 deals with ideas around solutions in a more non-linear way.

An estimated 1 in 133 Americans, or about 1% of the population, has celiac disease. However, recent screening studies point to a potentially higher prevalence than 1% in the United States. A mass screening program of children in Italy found the prevalence of celiac disease to be 1.6%.

Celiac Disease Society

I have chosen to write this post in a way that deals equally with the facts surrounding the disease as the behavioural psychology and emotional dimensions that highlight the true impact it has on so many individuals’ lives.

Gluten itself is essentially the ‘glue’ in wheat, barley, and spelt; it’s what gives bread and all that delicious baking its soft, chewy texture, which explains why the actual consumption of gluten has exploded worldwide in the past decades. Few would argue that gluten itself is not delicious.

Gluten is a protein found primarily in wheat that has been associated with celiac disease. Gliadin appears to be the primary cause of celiac disease. Gliadin is a peptide contained within gluten-containing foods, and upon ingestion causes inflammation due to stimulation of helper T-cells.

MedCrave Online

The hallmarks of the disease happen in the small intestine, where essentially the body (in those with the disease) vastly overreacts to the presence of the gluten protein and causes an ‘auto-immune’ reaction. There are multiple different symptom profiles and ways this can manifest, which are explored in further detail below.

Celiac Disease – An Overview

Celiac is a debilitating disease that many suffer in silence with for their entire lives.

There are two extremely powerful narratives that surround Celiac:

  1. That while a Gluten-Free Diet (GFD) does help the clinical symptoms for most, removing it from the diet (even permanently) does not stop the persistence of the disease in most cases
  2. There are no treatments

I use the word ‘narratives’ because these two points essentially force people who suffer from Celiac into an often lonely and somewhat jaded ‘psychology’ that comes from suffering from something that is so poorly understood and not having any remedies.

For example, with cancer – a deadly and devastating illness that we are generally familiar with in the West – there is a medical and social consensus (for most cancer types) on expected lifestyle changes, potential treatment/side effects, financial impacts, etc. which helps those who suffer both adapt socially and in many cases survive physically.

With Celiac, neither a social or medical consensus exist, outside of the fact that one can’t eat gluten. Certainly, the increased prevalence of gluten-free options in restaurants and grocery stores helps, but the omnipresent threat of being “glutened” and subsequently having to go to the hospital (for some!) still exists. What happens when one goes to the hospital with a severe gluten reaction as a Celiac (more on my story below) is unclear to me, but it isn’t a “treatment”. It is a stated fact on all Celiac-related websites that no pharmaceutical treatments exist. Furthermore, as you will see below, the disease is likely to continuously devolve for many and lead to other much worse conditions.

While the medical context of the disease deals with the damaged villi in the small intestine, and the consequential ‘autoimmune’ markers, there is a psychological imprint left by the disease that I would argue is of as great of concern as the physical symptoms. Especially for young people and children.

The interplay between the psychological dimension and the physiological dimension can also be, in large part, attributed to the connection between the gut and the brain.

Celiac disease is a complex genetic disorder, and HLA status appears to be the strongest genetic determinant of risk for celiac autoimmunity. Vitamin B12 is one of the most common nutrient deficiencies associated with gluten intolerance. The small amount of Vitamin B12 that does reach the intestine will not be fully absorbed due to the intestinal damage. A subsequent deficiency found in those with celiac disease is that of folate and iron where, in untreated celiac disease, there is loss of brush border proteins and enzymes needed for absorption of dietary folate. Moreover, individuals with untreated celiac disease have been found to excrete fat into their stool because of poor absorption by the small intestine. As a result, they are deficient in omega-6 and omega-3 fatty acids. This is detrimental because these essential fatty acids control inflammation and blood clotting, which is vital in preventing heart disease and neurological disorders.

MedCrave Online

Celiac disease is not a disease that is fully solved by taking probiotics or eating a gluten-free diet. Nothing associated with the modern movement related to ‘gut health’ will work on Celiac long-term because the disease is metabolic in nature, not digestive. The biomarkers, as will be shown below, affect the major metabolic pathways in the body and the organs associated with them.

Celiac Disease – Diagnostics

The diagnostics surrounding Celiac disease are not cut and dry, and for this reason there is a large % of the population that is misdiagnosed or undiagnosed.

Celiac Fast Facts

It is estimated that up to 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions.

Celiac Disease Society

There is a very technical element to Celiac diagnostics and a very behavioural element.

The technical element pertains to the different types of testing options and the subsequent accuracy, and the behavioural element pertains to our association with the disease to gluten itself, when in fact the main symptoms can affect people in different ways outside of the traditional digestive symptoms related to gluten.

As an example of the behavioural element, someone who often becomes sporadically erratic or irritable compared to their baseline personality/behaviours could be Celiac and have absolutely no idea. The possible explanation would be that when the gluten molecule hits their small intestine it affects certain biochemical pathways that influence their emotional state. Were they to test using one of the more accurate tests, they would test positive (as a hypothetical).

Contrary to that, in my case, which I will explain below, I had the classic clinical symptoms and was sent for a blood test (in 2013) by my family doctor, which was negative. I am not sure which blood test, but I assume IgA antibody. There was no followup and no biopsy done.

Technically, the most common and accurate test is the tTG-IgA test:

Tissue Transglutaminase Antibodies (tTG-IgA) – the tTG-IgA test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. The test’s sensitivity measures how correctly it identifies those with the disease. The same test will come back negative in about 95% of healthy people without celiac disease. The test’s specificity refers to how accurately it is able to identify those without the disease.2 The tTG test is the most sensitive test for celiac disease.

Celiac.org

Of the 2 – 3% who have the disease but come back negative (false negative) from this test, it is because their body does not produce enough of the IgA antibody for the purposes of the test. Remember, that you have to be on a ‘gluten-containing diet’ for the test, which puts those who are likely to have the disease into a tailspin. Getting an endoscopy biopsy to take a small tissue sample from the bowel (biopsy) is another confirming step, but is by no means pleasant.

Practically speaking, the manifestation of so many different possible symptoms combined with the prevailing ‘no available treatment’ narrative means that it makes sense that the vast majority will be either undiagnosed or misdiagnosed. An improvement in diagnostic technologies may bump those rates up, but it is more likely that to solve the the ‘undiagnosed/misdiagnosed crisis’ there will need to be a lot of work done on the treatment end, which is where I am going in Post 2 – Diamine Oxidase and Histamines.

My Story

I could write a novel about this part, but I have decided to bullet point the highlights of it in relation to the investigation of the disease for the purpose of moving towards some new ideas for a treatment.

  • I grew up healthy and strong with no major medical problems – physical, immunological, nor emotional – through my early 20s
  • I started having random and uncorrelated ‘panic attacks’ – along with some significant brain fog – while on an exchange in Lisbon in 2008 (I was 22)
  • I had no idea what gluten was until 2013 really, but I managed to completely stop the ‘panic attacks’ and brain fog by stopping drinking beer (I observed it as being the trigger in early 2010)
  • I also switched to a vegetarian diet from 2009 – 2014. My gluten intake did not stop in those years (if anything it increased), and I started going back to fish in 2014 and eventually some meat in 2017
  • It wasn’t until mid 2013 while I was living in Montreal that I started to have persistent digestive issues, and it wasn’t until a ‘trigger event’ at a wedding in early September of 2013 that I had my first major gluten reaction to a piece of bread
  • I went to my family doctor and explained everything about my symptoms, the incident with the piece of bread, etc. and she thought it might be a ‘corn allergy’ but sent me for a celiac blood test anyways
  • Even though I had just pretty much gone into a panicked state off of a small piece of bread at a wedding mere days before, there I was eating half a loaf of bread and bowls of spelt spaghetti mere days later for this blood test. The blood test came back negative
  • It took me days and days to fully expel that amount of gluten from my system, and while I was relieved that I had “officially” tested negative (keeping in mind I still didn’t really know what gluten was or was in at that time), the problem was far from over
  • It also happened to be at a time when I was moving to London, UK. It was late September 2013 when I moved there officially (I was 27)

The picture on the left is me in London in 2012 on my first trip(s) there when I was thinking about moving there. The picture on the right is me in London in spring 2014 at the low point of my immunological journey.

  • There were a lot of stresses in London when I moved there but I liked being there and actually got off to a great start there, all things considered, especially since I was doing everything solo
  • This is the point in the story where a lot of armchair analysts would say it was probably ‘stress’ that caused me to get to the state on the right, but that is not the truth
  • I started getting progressively worse in about Feb. 2014. I had become sensitive to so many foods (nuts, grains, almost everything in a Veg. diet) and it is clear now that my body was not absorbing nutrients properly
  • London, UK also has a lot environmental stressors beyond the noise and people. ‘Tube Dust’ and diesel fumes from the buses are not good when your body is overreacting to unknown toxins. That mask you see above is one I started wearing for a couple weeks while I was biking outdoors as I mapped out what was happening in my body
  • I also had trouble with cleaning chemicals in-home (liver overload) and put £150 worth of plants in my room to try and clean up the air
  • The low point came in the build-up to another wedding in April 2014 when, in the lead-up to to the wedding, I got Shingles (> Oregano Oil) and ended up in the ER for some symptoms that related to essentially MASSIVE gut tension blocking certain nerve pathways
  • I wound up in the office of a fairly good UK GP (Doctor) and after a battery of tests, found NOTHING WRONG. If you look at how pale, skinny, and weak I was, you knew something was wrong. I admire this GP’s presence of mind to refer me to a local Nutritionist who ended up being an INCREDIBLE blessing
  • After seeing me in person and listening to the story I have listed above for 10 mins., she believed I was right about the problem being GLUTEN. She ordered some very advanced serum (blood) tests from Cyrex Labs in the US (I don’t think you can order these tests in Canada)
  • None-of-the-above pertained to a clinical Celiac diagnosis for me, but the red readings are pretty much off the charts and the yellow are problem areas in terms of how my body reacts to gluten
  • I also tested for cross-reactivity for non-gluten grains, including: buckwheat, amaranth, teff, and sorghum
  • A stool test looking for a potential Candida infection yielded a surprising result in the form of a rare parasite which I will leave unnamed and was a beast to kill. In relation to the whole post on Celiac, I will say that this parasite LOVES to feed on gluten and is highly probable to be the catalyst for the panic attacks in 2008; nevertheless, the symptoms related to gluten did not go away when I killed the parasite
  • I should say, in relation to my own psychology at this time, I was not happy. I was not clinically depressed or anxious, but I knew the writing was on the wall for my ‘London Move’ which seemed almost impossible to believe after about 9 months. I moved back to Canada in summer 2014.
  • But … given my nature, I committed to getting to the bottom of the problem at any and all costs. Given the established – and quite frankly life-saving – connection I had with my Nutritionist in London , I would end up coming back to London much more in the future after about a 9 month hiatus

As I write out in Part 2 – Diamine Oxidase and Histamines – I started to make some breakthroughs in 2016 that allowed me to eat out again, and eventually build a bridge to today where I can deal with gluten in my body relatively easily compared to this time period above where it wreaked absolutely havoc on every facet of my life – emotionally, physically, spiritually, and financially .

Celiac Disease – Symptoms and Other Complications

There are two sides to the Celiac disease symptom profile. There are the symptoms that occur in relation to the ingestion of gluten, and then there are the symptoms that occur in relation to the ‘auto-immune’ disease that can manifest itself in different ways over the long-term.

In relation to gluten molecule ingestion, speaking from both first-hand experience and in talking to others who are affected by the disease, the symptom profile is roughly as follows:

  • many Celiac sufferers have to go to the hospital if they get ‘glutened’
  • a lot of the reaction depends on the individuals’ sensitivity and the amount of gluten they have ingested. for example, ‘molecular gluten’ can cause a small reaction that could ruin a day, but if someone were to accidentally be served ‘glutenous’ piece bread for example (if they ordered gluten-free), the ensuing reaction could force them to go to the hospital
  • the hallmark of the disease, in relation to gluten, is that when the gluten molecule hits the small intestine it creates a sort of “panic” reaction by the body as if gluten is a super toxin
  • this “panic” is defined by an immediate desire by the body to get rid of the gluten, but as the small intestine becomes inflamed by it, it can take days for that process to occur
  • brain fog, depression, anxiety, and sometimes even worse emotional symptoms can ensue (it is biochemical and not thought patterns)
  • skin conditions such as rash, hives, and other symptoms can occur, making it a physically uncomfortable sensation
  • the digestive element of it is effectively for the body to shutoff the normal digestive process (via appetite triggers) and to ensure that the body still digests food outside of just the gluten molecule (as gluten itself may only be a small component of the food ingested)
  • sleep can be difficult and other neurological sensitivities can become heightened at the peak of a gluten reaction, such as sensitivity to noise or just plain irritability
  • there are a host of other possible symptoms, ranging all the way to infertility in young women, which underscores the overall point of this post that this is MUCH MORE than just a disease in the gut/digestive system

In relation to the ongoing ‘autoimmune disease,’ there are many additional ‘disease elements’ that can be associated with Celiac, along with many potential additional complications.

One such complication is ‘insulin resistance’ and the exponentially higher probability of developing type 1 diabetes compared to the general population. The reverse is also true (celiac disease is 5-7x higher in the diabetic population). It is generally thought that there is a genetic link here.

the prevalence of celiac disease in people with type 1 diabetes ranges from 10 to 20 percent. By comparison, the prevalence of the condition in the general population is approximately one percent.

Gastroenterology Review

There is a crossover between non-celiac gluten sensitivity (NCGS) and insulin resistance, whereby many who suffer from NCGS do not suffer from the same problem at the small intestine level, but will show a dramatic improvement on a gluten-free diet.

There is no established link between type 2 diabetes and celiac disease. Type 2 diabetes does have genetic components, but they are not associated with celiac disease genes like type 1 diabetes.

Celiac.org

There are also many metabolic problems that crossover between diabetes and celiac such as anemia, nutrient malabsorption, and problems with other lipids such as cholesterol (see case study).

There is also commonly a link between Celiac and liver problems. While these problems remain ‘unknown’ officially, as I discuss in the next post on Diamine Oxidase and Histamines, the liver problems may offer clues to the causative dimensions (and thus treatments) of Celiac.

Liver problems may be due to abnormal liver chemistry (hypertransaminasemia, or elevated transaminase enzymes), which is common in untreated celiac disease patients. Some studies have shown up to 40% of undiagnosed/untreated celiac disease patients present with hypertransaminasemia

Beyond Celiac

There is a slightly-elevated risk of certain types of cancers in the intestine for those with Celiac, but only about 1.11X more than the general population.

All of these symptoms are combined with ‘autoimmune’ symptoms in the form of lowered immunity to other pathogens and, in many cases, cross-reactivity to other non-glutenous grains and other types of foods.

Personally, I got sick A LOT in 2014 – 16 until I addressed the underlying immunological issues associated with the parasite. In addition to the above-mentioned food sensitivities to non-gluten grains, I also became pseudo-allergic to to many kinds of nuts.

Celiac Disease – Solutions?

In the next post, I will explore this statement in depth.

There are no pharmaceutical treatments or cures for celiac disease. A 100% gluten-free diet is the only existing treatment for celiac disease or non-celiac gluten sensitivity today.

Celiac Disease Society

Overall, this is Part 1 of a two-part series about Celiac revolving around peer-reviewed research and my own experience. This post digs deep into the problem at both the physical and emotional levels. But I believe there is ample research about the problem out there, in Part 2 I start looking at a possible solutions pathway. Feel free to let me know any thoughts.

GLU1 (Part 2): Diamine Oxidase and Histamines

GLU1 (Part 3): Pterostilbene and the Liver

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