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

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bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/7/2013 6:10 PM (GMT -6)   
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)


drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 3/7/2013 11:23 PM (GMT -6)   
Read the whole thing. Interesting stuff Bruce, thanks for taking the time to post it. It is a lot to process.

Do you think allergy testing is worth getting as a first step for everyone with GERD? Or do you think that basic testing (I don't know anything about it, but I think it involves a series of skin pricks) might only be useful for GERD patients with specific symptom patterns?

I know everyone is different, but I'd like to think that our bodies are similar enough to be able to narrow down exactly what's happening based on what we experience and when we experience it. So someone who has heartburn may have a different cause from someone who experiences asthma or coughing, and maybe allergy-related stuff is separate from anatomically related stuff.

What about people who have increased reflux events in pH study, who have surgery that takes them to normal levels of reflux, who then become asymptomatic? These people are presumably eating the same foods. Is the allergy investigation only viable for people who continue to have symptoms after surgery,and/or who are having symptoms within "normal" ranges of reflux as detected by 24 hour pH testing?

Your symptoms seem very severe.. do you think that people with more mild symptoms that are more classicly associated with reflux, are potentially just along a continuum of allergy/intolerance?

Like I said, your post is a lot to process (for me, at this hour anyway) but thanks for getting the conversation going.

FWIW, Re eosinophils, this is what my biopsy results said:
.."the epithelium itself shows no features of
reflux esophagitis. However, there are scattered eosinophils which do not meet
criteria for eosinophilic esophagitis. The features may represent reflux
esophagitis; however, they are not diagnostic. "

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 3/8/2013 6:21 AM (GMT -6)   
I for one always enjoy words of wisdom from Bruce, as usual his post are very deep and detailed.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/8/2013 9:58 AM (GMT -6)   
I just did a search on PubMed using "gluten and GERD," and came up with some interesting results:
 
Esophageal manifestations of celiac disease
"Since the participation of gluten in the esophageal symptoms of CD seems clear, its intimate mechanisms have yet to be elucidated, and several hypothesis have been proposed, including the specific immune alterations characterizing CD, the reduction in nutrient absorption determining the arrival of intact gluten to distal gastrointestinal segments, and various dysregulations in the function of gastrointestinal hormones and peptides. Recent studies have suggested the existence of a possible relationship between CD and eosinophilic esophagitis, which should be more deeply investigated."
 
Celiac disease and gastroesophageal reflux disease: yet another presentation for a clinical chameleon
(No summary)
 
Gastroesophageal reflux symptoms in patients with celiac disease and the effects of a gluten-free diet
"GERD symptoms are common in classically symptomatic untreated CD patients. The GFD is associated with a rapid and persistent improvement in reflux symptoms that resembles the healthy population."
 
Neurological and psychiatric aspects of some gastrointestinal diseases
"Up to 85% of patients with histologically proven coeliac disease have no gastrointestinal symptoms; consequently, measurement of antigliadin antibody titre is therefore vital in all cases of idiopathic ataxia. Complete resolution of neurological symptoms is the result of gluten-free diet."
 
Effect of gluten-free diet on preventing recurrence of gastroesophageal reflux disease-related symptoms in adult celiac patients with nonerosive reflux disease
"The present study is the first to have evaluated the effect of a GFD in the nonerosive form of GERD in CD patients, by means of clinical long-term follow-up, suggesting that GFD could be a useful approach in reducing GERD symptoms and in the prevention of recurrence."
 
Clinical symptoms in celiac patients on a gluten-free diet
"Persistent villous atrophy in patients with celiac disease (CD) on a gluten-free diet (GFD) is reported with increasing frequency. The aim of this study was to evaluate a possible association between persistent damage of the villi and "atypical" gastrointestinal symptoms in CD patients on a GFD."
 
Prevalence of celiac disease, Helicobacter pylori and gastroesophageal reflux in patients with refractory iron deficiency anemia
"Apart from offering them gluten-free diet rich in iron, early detection and treatment of IDA and prophylactic iron and folic acid supplementation will go a long way to optimize their mental and psychological functions."
 
Palmoplantar pustulosis and gluten sensitivity: a study of serum antibodies against gliadin and tissue transglutaminase, the duodenal mucosa and effects of gluten-free diet
"Palmoplantar pustulosis (PPP) is a chronic inflammatory disease affecting mainly smoking women. Some patients also have psoriasis. A subgroup of patients with psoriasis has been shown to have silent gluten sensitivity with relevance for their psoriasis. Nothing is known about gluten sensitivity in PPP...Patients with PPP should be screened for antibodies against gliadin and tTG. Those with antibodies can be much improved on a GFD regardless of the degree of mucosal abnormalities."
 
The treatment of gastro-esophageal reflux disease in adult celiac disease
(No summary)
 
I'd like to point out that most people do NOT have celiac disease!  However, the reason celiac is used in medical studies is that, when it can be determined with tests, it provides a quantifiable standard for peer-reviewed studies.  The only meaningful difference between celiac and non-celiac gluten sensitivity, is that celiac represents a genetic predisposition.
 
drtinsac -- Unless I am mistaken, skin prick tests are only for Type I allergies.  Type I is not relevant to this discussion.  Serum levels can be checked for antibodies, but this is unreliable, and depends upon consuming the antigens in question regularly and continuously up to the test.  Sometimes there is a negative test for serum levels, only to find positive antibodies in the stool.  The only foolproof method to determine intolerance/sensitivity is the elimination diet, and evaluating at 30 days.  However, the elimination diet makes testing for antibodies irrelevant, so, what is usually done is to "challenge" the diet by re-introducing foods.  In my case, I would not do this intentionally!
 
By the way, I did test positive for candida antibodies, and there is a correlation between candida and gluten.  I've known about my sensitivity to yeast my entire life, and have avoided fresh-baked breads, for example.  I seem to recall you had questions about the condition of your tongue?  This might be something to explore.
 
I'll be the first to admit that there appear to be other causes for GERD, and that surgery can resolve some symptoms, perhaps temporarily?  Let's say someone has bad asthma and GERD, and the surgery also improves the asthma.  I'm just theorizing here, but perhaps the erosions from the GERD were allowing environmental antigens to enter the bloodstream, exacerbating the asthma.  But the underlying cause for the asthma, and the original activation of the immune response, is still there.  I've heard the following proposed to describe hypersensitivities: that each individual's tolerance level is like a bucket, and they can stand and recover from water being filled to the brim.  When their tolerance level is breached, is when the water reaches and spills over the brim.  Over time, the bucket gets smaller and smaller.
 
I'm not sure I follow your ponderings about the timing and/or relevance of testing, and I don't have good input here.  When you say, "become asymptomatic," do you mean typical symptoms resolve, but extraesophageal become worse?  I would suggest anyone with GERD can do a simple elimination diet for 30 days, and note any changes.  It's unlikely that they will see changes in their reflux during this time, but if there is notable improvement in other ailments, or even simply a greater sense of well-being, then this provides valuable input for further consideration.
 
Yes, my symptoms became very severe, but I'd also like to point out that they were "adult onset."  I was very healthy and fit the first 45 years of my life.  I agree with you about each individual's intolerance/sensitivity is just a point along a continuum, and one may or may not progress further.  However, just because someone is "mildly sensitive," doesn't necessarily mean they are free from symptoms.
 
I submit that just by becoming a member here, or posting, most have already qualified themselves as potentially belonging to a statistically-relevant group.  The members of this board do not represent the same sensitivity standards, for example, of the general population.  It's human nature to try to hide behind the curtain of, "that doesn't apply to me," when the idea in question is uncomfortable in nature.  When we need a sense of belonging, then we are apt to claim kinship to others in the same boat.  It's easy to see this in operation all the time here.  I'm not being critical -- just trying to expose some dynamics that may be present in preventing acceptance of important information.  (I'm also not claiming this is true in your case -- you are obviously intelligent and consistent in maintaining an open mind.)
 
Recent studies have shown, that while humans are living longer lives, their QUALITY of life is declining.  More and more people are suffering from chronic diseases, and the average number of prescriptions carried at any one time per individual is increasing.  (Some of this is due to pressures from big pharma, to be sure.)  I could write a whole other post similar in length to the OP about this.
 
Your notes from your biopsy with respect to eosinophils seems to indicate that the lab felt the density was not "clinically important."  I do not agree with this.  I'd like to point out something else.  The human body is not a biological machine made up of discrete, separate systems.  It's made up of permeable tissues that are crammed together in a bag.  The biopsy for eosinophils is only digging in the esophagus.  Who's to say that there aren't also leukocytes a few millimeters away in the lungs, for example?  The presence of eosinophils indicates a heightened immune response, and is an important indicator.
 
This is all just my opinion, of course, but I've put a lot of effort into trying to understand all this, and considering it from unconventional angles.  Because I've had such a miserable experience with doctors, I no longer accept their input and advice without challenge.
 
DOGGBONES -- thanks for your input!  :)
 
-Bruce

Snowinsummer
Regular Member


Date Joined Jan 2013
Total Posts : 40
   Posted 3/11/2013 8:27 PM (GMT -6)   
Hi Bruce,

I'm leaning towards the theory the food sensitivity plays a role in my LPR. Since coming down with severe LPR symptoms in January (that lead to a case of pneumonia), I've been thinking about what transpired prior to the diagnosis. Here is my story...

In late October I decided to limit sources of gluten in my diet after reading the "Wheat Belly" book. I have never been a big fan of bread, even as a child; A sandwhich or plate pasta would make me totally exhausted and induce brain fog. So I went mostly GF and felt pretty good. I didn't realize it at the time, but now I recall that I didn't have a migraine during that time. December and the holidays came and I totally blew my GF diet!! The migraines returned, and LPR symptoms started too. By New Years Day I was coughing so bad it sounded like I had whooping cough! My GP put me on PPI and inhalers and said it may take 8 weeks to heal my damaged throat. I went back to GF, and after a while realized the migraines had stopped.

I always thought that wine was a trigger for my migraines. Now my theory is that it was the bread that accompanied the wine that was the culprit! Or at least, that's what I'm hoping (in the event that I can ever drink wine again).

I've read that once on a GF diet, if you reintroduce gluten your symptoms are magnified. I think that's what happened to me. I've recently stopped the PPI and switched to Zantac. I plan to wean off the Zantac over the next couple of weeks. I'm also contemplating dropping dairy from my diet. My plan is to try controlling the LPR with diet, with the occasional OTC help when required.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/12/2013 11:03 AM (GMT -6)   
Thanks for your comments, Snowinsummer.  Discovering food intolerance, and one's individual sensitivities, can be a slow process.  Of all the various autoimmune symptoms, it seems if you can just get on top of the headaches/migraines, and be able to think more clearly, the rest is easier to deal with!
 
Keep in mind that your reaction to wine may be due to the yeast.  Yeast and gluten sensitivity often go together.
 
By the way, I was channel-flipping last night, and happened upon a PBS program/fundraiser highlighting JJ Virgin's "Drop 7 Foods" diet.  I did some investigating, and it's a huge marketing thing for her company, including dietary aids and supplements.  She did mention the health issues with respect to food intolerance (the seven foods are: gluten, dairy, eggs, soy, peanuts, corn, and sugar/sweeteners), but the main focus seems to be weight loss.  I'm not endorsing this diet, by the way, but it does seem to be a step in the right direction.  At this point, anything that helps in the education process is a good thing!
 
I haven't lost a significant amount of weight on the diet, even though my daily caloric intake has dropped to the 1,000-1,200 range.  I'm fairly certain that something has changed with my metabolism, because I'm not even really that hungry.  I need to get this figured out, because if my metabolism has slowed down this much, it also means that any healing that needs to happen is also impacted.
 
Here's to continued progress!
 
-Bruce

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/12/2013 3:54 PM (GMT -6)   
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)


Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 3/13/2013 6:50 PM (GMT -6)   
Bruce. I've read your research with much interest. Here is a brief article about IgA deficiency which is tied to celiac and other things (asthma, ear infections, lungs, GI tract etc.) .Our recent lab draw showed a deficiency and wonder what you think about it. Out of curiosity ( I dont want to offend by asking) but have you had Ig lab check and what were your numbers.

http://allergies.about.com/od/childhoodallergies/a/Immunoglobulin-A-Deficiency.htm





http://allergies.about.com/od/childhoodallergies/a/Immunoglobulin-A-Deficiency.htm

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 3/13/2013 7:07 PM (GMT -6)   
Surgeon Kevin Gillian specializes in treating acid reflux at Virginia Hospital Center Physician Group. He says for some people, it's not the stomach acid causing the problems. It's actually other enzymes in the stomach fluid. So acid reducers like PPIs don't help.

"We can knock out the acid, but it doesn't stop the fluid from coming up and fluid in the stomach has lots of other things that can cause irritation and problems for people that is different than the classic heart burn spectrum."

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/13/2013 11:27 PM (GMT -6)   
Hi Pat --
 
I just got these results last month:
 
Tissue Transglutaminase AB, IgA = 1 (<4 U/mL)
Immunoglobulin A = 140 (81-463 mg/dL)
Gliadin (deamidated) AB (IgA) = 7 (<20 units)
 
Basically what this says is that I'm negative for celiac, however, these tests are unreliable.  It can be just as serious to have NCGS.  All I need to know is that I'm feeling much, much better eliminating the foods I mentioned, and when I have accidentally eaten something with one of those foods, 11-12 hours later my headache escalates quickly.  Although recovery can be very slow in general, the worst of the immediate symptoms take about four days from a single episode.
 
I read the article, but I don't have much to add.  I Googled a bit, and the deficiency is probably a hereditary condition, although it's interesting how the symptoms overlap with other Type III conditions.  I would guess that an elimination diet would help reduce the immunological load on the body, and mediate some symptoms...even though this is a deficiency and not an intolerance.
 
I don't know of Dr. Gillian, but I think what he's referring to is pepsin.  And he's right -- acid suppression therapy doesn't stop reflux from happening.
 
Not all who have food intolerances experience neuropathy symptoms, but for those who do, they can be quite debilitating.  Even if one doesn't have outward signs of neuropathy, I can't help but wonder...what might be happening internally with the CNS to perhaps initiate GERD?  Here's another question to ponder: why do so many people regularly use analgesics, and why is their use on the increase?  Is this a sign of hypersensitivity?
 
-Bruce

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 3/14/2013 5:32 PM (GMT -6)   
Hi Bruce,

A lot of work you've done here! I'm sure it will help lots of people.

I was already wheat, egg and cow's milk free for 20 years before my GERD began. I asked to be tested of Eosinophilic Oesophagitis but sadly the lab just re-confirmed my Barretts (2 consultants looked at the slides). My wheat allergy is Type 1, and I react whether or not the gluten component is present. I have tried being gluten free but it had no effect on my symptoms. My egg and milk reactions may be intolerance - the allergy clinic looks down on any reactions that don't involve blue flashing lights. Last year I asked them about being on a PPI and the risk of new allergies. They said only peanut allergy had been proven to develop as a result of PPI usage. I am not convinced on that score, but so far I don't have any obvious new allergies. The PPI does have a detrimental effect on my eczema though, making it much harder to manage.

I am wondering more and more about surgery as I'm worn down by this illness and the social restrictions and effects on my young family, not to mention my poor long suffering hubby. What frustrates me is the huge variability in symptoms - medication seems to give me good relief for weeks on end and then all of a sudden I can be so bad I think I must have forgotten to take it! How can a structural problem vary so much?!

MMM
GERD (over 2 years)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/14/2013 5:46 PM (GMT -6)   
Hi MMM --
 
You may be one of those individuals who would benefit from looking more into the DAO deficiency and histamine intolerance I mentioned above.  You don't mention other symptoms other than the eczema...which can be a symptom of intolerance.  The reason all this is so variable, is that expressions of autoimmune disease are highly individualized.
 
I encourage you to keep looking.  Soy is an important trigger, as is fructose and other sweeteners.  MSG is an evil compound, as is "hydrolyzed vegetable protein."  Surgery may be helpful to you, but I guarantee, if you're struggling with an intolerance, you will still have other symptoms afterwards even if the surgery is 100% effective in controlling the reflux...as long as you keep ingesting the problem food.
 
I know you'll figure this all out!
 
-Bruce

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/14/2013 9:43 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
 
 

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 3/15/2013 4:36 AM (GMT -6)   
Bruce,
Do you think ppis make lpr symptoms worst? The theory that ppis lower stomach acid but by doing so the pespin and bile become more concentrated making the non-acid reflux actually worst (more damaging) then the acid reflux to start with? I don't have a link but I've came across some articles that seems to support that theory, just wondering your thoughts on it.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/15/2013 9:45 AM (GMT -6)   
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

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 3/15/2013 2:24 PM (GMT -6)   
Thanks Bruce. I'll try to read the DAO link. Eczema and a lot of itching are my main responses to ingesting my known food allergens. With wheat I also get gut symptoms (colic and diarrhoea). I've tried being soya free but that didn't seem to change anything.

I have something else odd that I can't quite crack, to do with essential fatty acids. Following a "heartburn tip" on this forum I tried a teaspoon of olive oil per day and had the most fantastic skin ever within a week. It wasn't great on the stomach though and I found I couldn't face it after a while. Recently I tried evening primrose oil - again my skin improved hugely and very very quickly, but I suspect it aggravates the GERD (awaiting repeat experiment). My skin is not good whilst on PPIs but it can clearly be dramatically changed, if I could but just tolerate the supplements!

Thanks again - I'll come back when I've done the homework!!

MMM turn

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/15/2013 3:03 PM (GMT -6)   
Good Afternooon Bruce, and I am glad you have found something you feel may help you with your issues. 
 
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 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"The wind blows, the sun rises, the snow falls and the ocean relentlessly pounds the shore. Life rolls on with fresh new possibilities at every turn."

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 3/15/2013 4:07 PM (GMT -6)   
Does numbing down the nerves by using an anti depressant address the reactions to a food intolerance?

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/15/2013 4:07 PM (GMT -6)   
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

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/15/2013 4:12 PM (GMT -6)   
TheSixness --
 
Based upon the results I've seen here on this board, as well as my own experience with nortriptylene, I would say no.  Apparently there are some cases where low-dose antidepressants will somewhat deaden the nerves in the esophagus, but the reason remains a mystery.  Doctors do not understand why, or what the underlying condition is that responds well to this treatment.
 
If you have a food intolerance, there is only one remedy, unfortunately.
 
-Bruce

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/15/2013 6:35 PM (GMT -6)   
hi Bruce

We do have a Celiac Disease Forum so perhaps sending our members to the celiac forum may help them understand that disease better.

We do ask that you try to refrain from posting extremely, long, technical threads and mentioning the thread is long doesn't make the post immune from our guidelines. Sorry.

You are a valuable member of this forum and you are appreciated for your dedication therefore I hope you take my message in the way it is meant. - Just a reminder to keep our guidelines in mind.

Don't know if you have heard but I completed 10 rounds of chemo so I battle on. Next is the monitoring and testing. :)

Thank you for your understanding,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"The wind blows, the sun rises, the snow falls and the ocean relentlessly pounds the shore. Life rolls on with fresh new possibilities at every turn."

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/15/2013 9:28 PM (GMT -6)   
Hi again, Kitt --
 
I'm sorry, I didn't know about your latest difficulties.  Best wishes!
 
I apologize for the length of my posts, and I know one of the most important roles of this forum is for folks to vent and/or support each other through this condition.  However, I think there is good information available to share as well.  One thing I find frustrating on messageboards are brief posts, where it's either easy to misunderstand someone, or an incomplete thought is completely open to misinterpretation.  I've perhaps erred on the other side of things, but I don't want to be misunderstood, especially when discussing something important.
 
I know there is a celiac forum, but the points I'm trying to make here are for GERD patients, and those diagnosed with EoE.  If I am allowed to get on my soapbox a bit, this is one of the great problems with medicine today -- everything is compartmentalized, and doctors are so specialized that they can't/don't recognize symptoms relevant to their practice, because it's part of another specialty.  In spite of all the advances in medicine, we stay stuck in some of the same methodologies that keep patients trapped in endless loops and undiagnosed.  /rant
 
Autoimmune disease, of which celiac is one manifestation, is an important factor in dozens of separate conditions.  Many members here also complain of other symptoms, and GI issues, which can perhaps have at their roots food intolerance.
 
I don't want to categorize folks here as "celiac," nor do I want members to immediately disregard what I'm saying because they are not diagnosed with this disease.  I want folks to understand that food intolerance (of which celiac/gluten is only one) might be an important factor in their discomfort, and managing it, at the very least, could improve their ability to find a better place with GERD, and perhaps make better decisions about surgery, if necessary.
 
If it's OK, I'm happy to continue adding to this thread if others find value in it.  I type fast, and I apologize for lengthy posts, but I try to be concise and write clearly.  I will not post again unless there are questions.
 
-Bruce

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/15/2013 11:07 PM (GMT -6)   
Bruce,

I am sure members will have questions for you .

I happen to strongly agree that many Drs only deal with their expertise instead of looking at the big picture.

When I was dx with colon cancer in August I asked my Primary Care Physician to be the go to person for me, the one who would have access and copies of all my info,meds, treatments, lab results and chemotherapy including any problems noted by my dream team.

I have an oncologist, Nurse Practioner, surgeon, GI Physician, a dermatologist, Psychiatrist and the one who looks at the whole picture, my awesome PCP.

This is truly where each of us needs to advocate for ourselve and ask for what we need.

Blessings to all.
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"The wind blows, the sun rises, the snow falls and the ocean relentlessly pounds the shore. Life rolls on with fresh new possibilities at every turn."

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 3/16/2013 5:49 AM (GMT -6)   
Hi again Bruce,

I have looked into histamine problems long ago, now that I remember, when I trained as a nutritional therapist (not practising now). Methionine and vitamin C and I think zinc are all co-factors in the breakdown of histamine. I think, if memory serves, zinc helps in the function of the hippocampus where histamine is stored??

I've not heard of the Daosin product but am happy to give it a try. I struggle quite a bit with supplements - a lot make my gastritis/reflux worse (can't tell which symptoms belong to which aspect), especially if they are in tablet form rather than capsule. These are in capsule form so I've asked for a sample and I'll let you know what happens!

Thanks again for all your research.

MMM
GERD (over 2 years)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 3/16/2013 5:58 AM (GMT -6)   
PS: I've also tried regular anti-histamine in conjunction with Zantac in the past as a way of trying to see if my GERD symptoms were related to any form of allergy. Do you think the Daosin could still work even if antihistamine doesn't? (Clarityn etc works for my hay fever and acute skin reactions to foods, but has no effect on my reflux or nausea).

MMM
GERD (over 2 years)
Lifelong stuff: Food allergies/intolerance, eczema, asthma
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