A new perspective on GERD/LPR and EoE (long)

First of all, let me begin this post by saying that I am not claiming a "cure for GERD."  Is the content here relevant for most of you?  Given what I now know, I'd say yes.  Is there a possibility that some may experience a lessening of GERD symptoms, or even reversal?  Possibly.  If you are also experiencing other chronic illnesses as well, might you in general feel better, and be better able to manage your GERD?  Very likely.

Most of us who post here have not experienced satisfactory resolution of our symptoms, despite trying many different things, and/or seeing many doctors.  Or, we may not be able to afford a physician's care, or our insurance isn't allowing us to see a specialist, or get the right tests.  For whatever reason, we've had to resort to this messageboard (which is the best GERD forum on the web, by the way), and Dr. Google.  The problem with doing internet searches though, is that while there is a huge amount of information available at our fingertips, we don't always know what the right questions are to ask, or the right keywords to use.  There isn't a good, central resource, to perhaps give us ideas to explain what's happening to us, or what to expect.  This is the reason for my post, to perhaps share some ideas you may not have thought of.

Part of the problem of medical therapies of any kind, is our expectations.  Conditions that have taken months or years to surface, are expected to be "healed" instantly, or within a few days, with a pill or surgical procedure.  In many cases this is true.  However, with respect to GERD, it is merely a symptom of something else.  So, measures taken to control it are not addressing a greater problem, and without attending the cause, symptoms can persist and/or appear elsewhere in different form.

I'm currently 51, six-foot-one and 185 pounds, and began experiencing IBS in 2006, GERD in 2008.  Between 2008 and 2011 I saw two ENT and six GI physicians in private practice, a large university hospital, and the Mayo Clinic.  In February of 2010 biopsies showed eosinophilic esophagitis.  I was prescribed H2 blockers and PPIs, but developed a tolerance to H2s, and PPIs caused massive headaches (more on this below).  I relented to TIF surgery in August of 2011, but this was only marginally successful in reducing symptoms, and failed to resolve what I was describing as LPR, including difficulty swallowing and asthmatic symptoms.  Even though I sleep on an incline, I taste acid in my mouth each morning.

Despite having all my symptoms and test results laid before them, none of these doctors even mentioned diet, let alone, food intolerance.  It turns out that the NUMBER ONE treatment for EoE is an elimination diet to identify intolerances leading to the eosinophils!

Have you had biopsies for EoE?  My opinion is that many of you would show at least a few per HPF (high-power field).  I think the reason this condition is under-reported is because it is not considered a significant condition until the number of eosinophils is >15.  Perhaps some labs, or doctors, see a number less than 15 and disregard it.  (If these lower numbers are, in fact, common enough to be disregarded, then this is a troubling trend.)  My densities were 5-14, yet this represented an important indicator.  I could recognize the subtle difference between the symptoms of EoE and heartburn, and I was swallowing a corticosteroid inhaler to manage it.  (Discontinued in March of 2012.)  My first EGD also revealed the tell-tale esophageal rings, but later EGDs found none.

Following the TIF surgery, other mysterious symptoms began snowballing.  Chronic fatigue, lack of restful sleep, muscle and joint pain, "brain fog" and cognition/memory problems, "jumping" legs when sitting, puffy face, blurry vision, and headaches increasing in severity.  Finally, in August of 2012, the neurological symptoms had gotten to the point that the headache was chronic, spiking to migraines 3-4 times per week.  I had become extremely apathetic, limped because of the hip pain, and could only occasionally think with any clarity.

I went to my GP (doctor number nine), and the first tentative diagnosis was "andropause."  When those blood tests came back negative, the next assumption was brain tumor.  I spent two days under an MRI machine, and those images proved negative.  (The MRI did note significant "sinusitis," no doubt, behind my chronic post nasal drip.)  Then I was sent to an endocrinologist (number 10), who continued with the andropause theme as well as hypothyroidism.  All these tests came back negative, and the endocrinologist admitted that there was nothing more she could do for me.

The pressures inside my skull were enormous at times, and the only relief I could find was with Maxalt -- a class of drugs called "vasoconstrictors."  The form that was most helpful to me was the MLT, which melts on your tongue and moves quickly into the skull.  This actually was helpful in diagnosing what was happening.  What I was experiencing was due to extreme inflammation, and the Maxalt reduced the inflammation and kept the chronic headache from spiraling into a migraine.  However, I was taking them so frequently that even they began losing effectiveness, plus, they are dangerous for men over 40 because of the effects on the heart and circulatory system.  I found myself falling into a state of apathy where I cared little if I lived or died.  I'm not trying to be melodramatic...just trying to describe how sick I was.

Finally, out of desperation, in December I began a gluten-free diet.  I improved a little, but not much.  A few days later, I discovered that symptoms spiked again after I consumed a "meal replacement drink," which contained whey.  This pointed to an intolerance to casein.  I continued improving until about the 45-day mark, but then leveled off.  I was still experiencing a chronic, low-grade headache and the persistent hip pain, although I was no longer limping.  My lung capacity had improved dramatically.  But still I was not continuing to see the improvement like I was before.

I'm vegetarian, and one of my staple foods for many years has been hard-boiled egg whites for protein.  It was during this time that I discovered that the eggs were also causing an intolerance reaction.  I've learned that my individual response is usually 11-12 hours after ingesting a problematic food, as I will experience an escalation in headache severity.  Also, since my diet had become so restrictive, I had purchased organic, non-GMO corn tortilla chips to have something salty to munch on and try to add to my troubling low caloric intake.  These also caused a reaction, and I learned that the traditional model of intolerance from wheat, barley, and rye gluten is outdated, and should include other grains such as corn.  The specific protein in corn is called zein, but is not a "true" gluten.  Whether or not I am specifically intolerant of eggs and corn can't be determined at this point, and it's entirely possible that in my current, hypersensitive state, I am reacting to things that I otherwise wouldn't.

By this point you're probably thinking, "None of this applies to me.  I'm not experiencing any of these symptoms.  I've eaten the same things my entire life and never had any problems."  One thing I'd like to point out is that food intolerance/sensitivity does not always produce obvious gastrointestinal symptoms!  The majority of the symptoms are autoimmune, with highly individualized expressions.  Here's another possible response: "I don't have food allergies."  You probably don't.  I'll talk more about this below.

Many people also have a psychological addiction to food, and will be subconsciously resistant to restricting their diet.  Being addicted to food doesn't mean being overweight, or someone who crams chocolates down their mouth all day long.  Food addictions can be as simple as loving a greasy, satisfying meal of foods we really intuitively know are not good for us, or sticky-sweet desserts.  Food addictions can also be tied with social interactions, and what we eat when part of a group of friends, for example, when going out to a restaurant.

Here's a thought, for some to ponder.  You may have noted that tomato sauce is a "trigger food" for your GERD.  But is it really the tomato sauce, or what you put the tomato sauce ON?  i.e., pasta, cheese, etc.  Sure, you may TASTE the tomato sauce when you burp it up, because it's acidic and has a characteristic flavor.  But maybe it's not to blame.

So, what does all this mean on a GERD forum?  On an oversimplistic level, what is GERD, really?  It's throwing up, isn't it?  Why do we throw up?  It's because we've eaten soemthing our body doesn't like, or is otherwise toxic.  Like I said, this is oversimplistic, and there are perhaps other reasons for GERD, like a paraesophageal hernia.  The jury is still out on mild to moderate hiatal hernias -- some with hernias don't have GERD, and some without hernias do have GERD.  But perhaps we need to keep the "throwing up" idea (sorry for the visual!) in the back of our minds.

Food intolerance, most notably gluten and casein, destroys the villi in the small intestine.  The villi are like a "shag carpet" coating a tube that's about 20 feet long, increasing its area to something like a football field.  If you remove the villi, or decrease their ability to absorb food efficiently, you can quickly become vitamin and mineral deficient.  Also what happens is increased intestinal permeability, which is where the autoimmune response comes in.  As undigested proteins are now able to pass directly into the bloodstream, antibodies are released to combat the unrecognized invaders.  However, since these food proteins are unrecognized, all the antibodies begin attacking normal physiological systems.  Hence, a broad array of non-specific symptoms.

But it doesn't stop there.  The small intestine is also part of a neurological network, closely related to the same type of cells that make up the blood brain barrier.  The same processes that compromise the intestinal barrier (by way of zonulin) also compromise the blood brain barrier, allowing large molecules to pass into the brain and activating a separate immunological response there, which can manifest as any number of neurological symptoms.  How might all this affect the vagus nerve, which, among other things, controls peristalsis?

I could write at length about vitamin deficiencies, but let me share two experiences.  I mentioned blurry vision, which was worst in my left eye.  Another symptom here was sensitivity to brightness, and I became nearly unable to use the computer because of the monitor -- even when I turned the brightness down.  To my dismay, this blurriness actually got WORSE on the diet!  After some reading, I found the reason for this was a B-vitamin deficiency.  Since those foods that have among them B-vitamins (but only because they're fortified as a result of being nutritionally poor) are the ones that are eliminated, the symptom became worse.  The particular vitamin in this case is B2, which is also used in migraine therapy.  I went right to the store and bought a bottle of B2, and within 24-48 hours, the symptom was gone.

The other experience I can share about deficiency has to do with Vitamin D.  Some scientists claim that this deficiency borders upon a "global epidemic."  In November of 2012 I tested low, at 34 ng/mL.  I began supplementing with 5,000 IU of D3 daily, and in February, tested at 61.  The specific test for this is 25-hydroxy, and doctors like to see a level between 55 and 80.

A genetic predisposition to gluten intolerance is called celiac disease, and affects 1% of the general population.  The number of celiac patients has grown at a logarithmic rate since 1974.  The number of non-celiac gluten sensitive (NCGS) patients is much greater, and estimates vary widely.  Also described are "pre-celiac" patients, who display some symptoms, but not the full-blown illness.  There are tests available for antibodies, and genetic tests for celiac, but these tests are notoriously unreliable, for several reasons.  Even the biopsy test for celiac can be unreliable as the villi may not be atrophied consistently throughout the small intestine.  The only reliable method for testing for food sensitivity is an elimination diet, of at least 30 days.

The prognosis for healing the intestinal villi is about six months for children to young adults, and up to two years or more for those 50 and above.  I'm hopeful that the memory/cognition symptoms and arthritic issues in my hips will clear up completely, but I know this can be a slow slog.  Since I've still been recently discovering trigger-foods, I really can't count December as the date when I was truly free from immune activation.  This is discouraging, because it means I have added at least two months to my healing time.  This could also be important because of what I said at the beginning of this post: that we have been conditioned to expect rapid healing.  Perhaps reversing the direction of a GERD condition, in some cases, may take months, or years as well?

Acid-suppression therapy is considered a first approach to mediating GERD.  But there is an important thing to know about this.  For those individuals who are predisposed to being food intolerant/sensitive, acid suppression therapy can escalate intolerance!  This reason this happens is that without stomach acid to break down protein molecules, these undigested peptides pass into the small intestine where the damage occurs and triggers autoimmune symptoms.  PPIs caused me massive headaches, and this is a known side-effect of their use.  But even after stopping the PPIs, my headaches continued, and snowballed...now an effect of the autoimmune-inflammatory-homocysteine response.

I don't profess to be an expert on hypersensitivity, but there are four types, with the possibility of adding a proposed fifth:

Type I Allergic

Type II Cytotoxic

Type III Immune complex disease

Type IV Delayed-type hypersensitivity, cell-mediated immune memory response

Type I is a typical allergy, mild to severe.  When this relates to food, the most common ones are peanuts, kiwis, and mangos, for example.  Pollen, bee stings, latex, etc., also fall in this category.  Symptoms in under 30 minutes.  Food intolerance is generally categorized as an IgG Type III hypersensitivity, but since the broad spectrum of autoimmune symptoms of later onset and longer duration can cause secondary reactions, individuals can also experience symptoms of the Type II category as well.  Type IV is a category of narrow definition, including transplant rejection and multiple sclerosis.  Milk and milk products can be Type I (uncommon), but when an individual is casein intolerant, it is Type III.  This is different from "lactose intolerance," which means you lack a specific enzyme for digesting milk, causing indigestion. 

I do not know where histamine intolerance and DAO deficiency fits into this model (a recently-described condition), but here is an in-depth discussion for those who are interested: http://ajcn.nutrition.org/content/85/5/1185.full.pdf  There is a reliable blood test for diamine oxidase (DAO) deficiency.  This last form of intolerance is an important form of intolerance, and an answer for those who don't seem to respond well to the more typical intolerance/sensitivity models. 

The only Type I allergy I ever had was one to cat dander, but I outgrew that many years ago.  Type I hypersensitivities can be outgrown, but can also appear and/or get worse with time.  What I am discussing in this post is not Type I.

There are several diets out there, that have varying degrees of success with GERD patients.  The common theme seems to be limiting carbs.  Dr. Jamie Koufman has such a diet, yet she fully admits she doesn't understand why it works for some and not others.  I believe food intolerance is the reason.  Of those who experience some degree of success on a carb-limited diet, I suggest that those individuals have varying degrees of intolerance.  Small degree of intolerance = big success on diet, high degree of intolerance = low success.  There is a conspiratorial side of me that also thinks, those authors who understand this also know that a complete elimination diet would a tough sell, and no one would buy their book.  Plus, an elimination diet requires no book, per se, since it is relatively easy to understand armed with a few facts.

I've also been self-administering a successful therapy, but I'm not sure I can talk about it here in detail.  I am purchasing a nutraceutical compound from a doctor, and delivering it to my lungs/bloodstream with a nebulizer.  This same formula is currently being used in Parkinson's, Alzheimer's, and COPD patients, among others (even athletes).  Within six, daily treatments, my remaining asthma symptoms were gone, and I am simply astonished at the amount of air I can draw in each breath!  My lungs feel "supercharged," because I have gone so long in a compromised state.  I think this is important to mention here, because for a very long time I associated my bronchial/lung/asthma symptoms with LPR, when, apparently, they were symptoms of the autoimmune reaction, and more related to the eosinophilic esophagitis.  You may very well have extraesophageal reflux extending past your vocal cords into your lungs.  But, could your symptoms be due to some other condition?

If you've read this far, I highly recommend watching this PowerPoint demonstration on YouTube, given by Dr. Peter Osborne: https://www.youtube.com/watch?v=cv5RwxYW8yA  It's long at 37 minutes, but will give you an excellent understanding of all the dynamics of gluten intolerance (and other intolerances, by association), as well as offering a list of all the various associated autoimmune conditions.  And, on a lighter note, you'll smile at this video: https://www.youtube.com/watch?v=b7YnxTa-y3g

I want to encourage all of you to become your own advocates!  No one else will do this for you.  If your current doctor is not helping you, then look for another...but in the meantime, don't put off your health waiting for another appointment, or another test!  There are things you can do RIGHT NOW on your own, and at the very least, offer a new doctor insight to help you better.  If you are considering surgery, you owe yourself the opportunity to explore this simple alternative.  You may be able to find an acceptable comfort level in 30 days on your own, and become better able to make a rational decision at that time.  I had surgery, too.  But, if I knew then what I know now, would I have waited to explore this further?  Absolutely!

Now that I know precisely what I'm dealing with, I've made an appointment with a rheumatologist, a specialty that deals with autoimmune disease.  However, since this is a "first visit," I must wait until July!  I will not put my life on hold until then!

There have been actual studies done to see if doctors continue to read medical journals in their respective specialties, to stay current with new research.  The majority do not.  As advanced as medicine is in the U.S., other countries actually lead us in the understanding and acceptance of food intolerance.  Many doctors here in this country are still resistant to considering it as a legitimate form of disease.

Should I have waited to post this after I "cured my GERD?"  Maybe.  On the other hand, there was one member of this board, who no longer posts here, who discovered that her GERD symptoms were caused by a milk intolerance.  She was immediately symptom-free after eliminating milk and milk products.  I admit I have a tendency to be negative, but I'm trying to become more optimistic.  I feel that this is important information for all to consider, and I'm hopeful that at least one of you may find something here beneficial in your path to wellness.  We all know how frustrating this is not to understand why this is happening, and not even knowing enough to find helpful information.  Maybe, at the very least, something in this post will give you a new keyword to use in your searches.

Here's to your good health!

-Bruce

Post Edited (bcfromfl) : 3/7/2013 5:22:27 PM (GMT-7)

Hi JPT --

I've followed your threads, and I'm glad you are now symptom-free.  As I've mentioned, I've had surgery myself.  However, I feel surgery is only a heavy-handed means to control a physiological problem that is not being addressed otherwise.  Surgery can moderate or stop symptoms, but that doesn't mean that the underlying conditions have been treated.  In my case (as well as others), the underlying condition expressed into full-blown autoimmune disease.

The fact that pepsin is finding its way into the airway indicates that something is wrong (of course!).  Research is only beginning to suggest some of this, but what I am proposing is that gluten and other proteins lead to pathologies and neuropathies that either trigger abnormal peristalsis, or inhibit robust peristalsis.  This is why reflux passes the LES and UES.  I know that pepsin may be potentially more damaging (and longer-lived) than acid, but the point I am trying to make is to return the GI tract to its normal state of health naturally (if at all possible), instead of relying upon surgery...or even getting to that point in the first place.

Small amounts of water are so incredibly difficult to maintain pH once introduced into chemical reactions, that any use of high alkaline water can only be expected to be essentially an "antacid" of short duration.  Plus, anything swallowed doesn't find its way past the delicate tissues of the airway below the UES anyway.  IMO, the benefits of alkaline water are marginal at best.

Also, when neutralizing stomach acid (with any means), one runs the risks I've outlined above of allowing undigested proteins to pass into the small intestine.

Thanks for providing folks with all the invaluable info about the LINX!

-Bruce

Post Edited (bcfromfl) : 3/12/2013 3:57:43 PM (GMT-6)

Hi again, MMM --

I did a little digging, and I understand your difficulties with the UK healthcare system.  There is an effective supplement to moderate homocysteine intolerance symptoms.  I'm not saying that you have this condition, but the supplement is otherwise safe, and perhaps you might consider it as a "diagnostic tool."  It's called DAOSiN, and the links below describe free samples to those in the UK.  Be advised that while it is gluten-free, it does contain corn.

Food for thought...

-Bruce

http://trulyglutenfree.co.uk/2012/10/27/free-daosin-samples-for-histamine-intolerance/

https://www.allergyuk.org/a---d/daosin

Hi DOGGBONES --

My opinons on LPR have been evolving a bit over the past year.  I think there are genuine LPR patients, who experience extraesophageal edema and erosions, and perhaps ulcerated vocal cords, due to either acid or pepsin exposure.  But I also believe there are reflux patients with "faux" LPR symptoms (i.e., phlegm, irritation in the throat, difficulty swallowing, irritated/swollen vocal cords) that's due to an autoimmune response to food intolerance/sensitivity.  The "faux" symptoms can also be assigned to genuine LPR symptoms, which is why this is so complicated.

(This latter category of NERD reflux patients are the ones who might get prescribed low-dose antidepressants to "desensitize" the esophagus.)

Now, there are a couple of things with PPIs.  First, in some individuals, they can have a powerful effect on the CNS...note the side effects of headache and sleepiness.  It's possible that there may be some inhibition of the vagus nerve in some patients.

The other important thing with PPIs (or H2s or antacids, for that matter) is that without acid, undigested proteins can pass into the small intestine.  In those individuals predisposed to food intolerance, this can increase the severity of the hypersensitivity.  The resulting autoimmune reaction can have a huge impact on the CNS, again, possibly impacting the vagus nerve.  As evidence to support this, there was a study on dogs of the impact of casein and soy protein on the force and frequency of motility in the small intestine.  Casein reduced these parameters "significantly."  Also, reduced stomach acid can also inhibit absorption of some key vitamins and minerals.  One is B12, which is also important in the health of nerves.

So, back to your question, do I think that PPIs can make LPR worse?  In some patients, PPIs improve all reflux symptoms.  There may be a category of patients who are extraordinarily sensitive to the neurological side-effects of PPIs, and these individuals may experience a lessening of intensity of peristalsis/motility...leading to an increase in exposure to extraesophageal acid or pepsin.  In others, who maybe aren't experiencing true LPR symptoms and perhaps are food intolerant, the faux symptoms from autoimmunity can get worse on acid-suppression therapy.

We all know that acid suppression therapy doesn't stop reflux, it only removes most of the acid component.  I suppose it stands to reason that, without acid, the concentration of pepsin and/or bile would be greater, but I don't know how much of these enzymes are present normally, and how these relative concentrations would measurably change.  I don't believe the digestive organs would somehow "sense" the lack of acid, and overproduce pepsin or bile to compensate.  So, without acid, I think it's safe to assume that the amount of pepsin and/or bile would remain the same in reflux, on or off acid suppression therapy.  I don't think a worsening of LPR symptoms can be claimed by this particular direction of theory.  However, if one is refluxing more, or higher into the throat, due to neurological side effects from PPI use, then the overall exposure becomes greater. 

By the way, for what it's worth, I was told by one GI doctor at the Mayo Clinic that actual "bile reflux" is rare.

-Bruce

If I followed your posts correctly it feels to me like you are suspecting that celiac disease is the major problem causing your many symptoms which leads to a change in your eating plan.

Celiac disease has both genetic and environmental components. In most cases, patients with celiac disease have the HLA-DQ2 allele, the HLA-DQ8 allele, or both. These alleles predispose an individual to developing celiac disease, although just because either of these alleles is present does not mean that person will develop celiac disease during his or her lifetime. However, in some patients with this genetic predisposition, consumption of cereal grain protein, such as that found in wheat, may induce an inflammatory response that damages the small intestinal villi and clinical presentation of celiac disease.

I am not going to repeat the info you have already brought up except for this one point; physicians should be aware that many patients who suspect they have celiac disease put themselves on a gluten-free diet before they even walk into a doctor’s office, in which case their autoantibody production may be suppressed. “So you may have a situation where a patient is on a gluten-free diet, they come in for serology testing, and it’s negative. And you don’t know if that’s the effect of their gluten-free diet, or if they just didn’t have celiac disease.”

I am going to post a gentle reminder here for everyone, HW Rule 6. No posts of copyrighted material, or  lengthy articles.  Sharing of links to helpful and relevant web sites and resources is allowed however posting excerpts from these resources is better left out of your post as the members can read the article for themselves and the posts become so lengthy that many members just don't bother to read them.

I thank you kindly for your understanding.

Kindly,

Kitt 

Hi Kitt --

Actually, among the points I am trying to make is that while celiac is a relatively uncommon condition, affecting about 1% of the general population, that NCGS individuals are quite a bit more prevalent.  It's relevant to speak about celiac, because the symptoms are essentially identical, aside from the genetic predisposition.  And yes, as you also mention, the antibodies required for testing positive require ingesting of the suspected antigens right up to the test.  Also, antibodies may not be present in the blood at all, which might require stool testing.  Celiac is often a difficult disease to diagnose properly.

I apologize if my writing is lengthy, but I did provide a warning in the subject line.  I provided brief summaries to some of the research articles I noted above, with links if folks wanted to read the entire summaries.  As I stated above, the reason the research articles specifically study celiac is that it is a quantifiable, accepted condition, that lends itself to statistical analysis and theoretical projections.

I don't want to violate any HW rules...I'm just trying to provide some information and experience that's not usually seen here on this board.

-Bruce