Eosinophilic Esophagitis

I was diagnosed with EoE, although it never progressed beyond a "moderate" count of 14 per HPF.  I was prescribed Pulmicort, which I swallowed, but discontinued this therapy after a little more than a year.

It's unfortunate that the terms "allergy" and "intolerance" are often used interchangeably, because they are not the same thing.  This is important, because food intolerance is most likely the culprit behind EoE, and not allergy.  Allergy=histamine, and intolerance=antibodies.  EoE is an abnormal accumulation of leukocytes in response to an immune reaction...NOT as a response to reflux, as several GI doctors told me!

I am suspicious of your "allergy" results.  You've presented quite a varied list, and while it's possible that at the time of your test these things provided a measurable reaction, you may have been in a state of "hyper-reactivity" in which potential antagonists (that normally would have been OK) became positive.

Gluten, and the similar molecule found in casein, are the most prevalent antagonists in food intolerance.  I would suggest another, specific elimination diet, and re-evaluating your symptoms.  Eliminating too many foods at once is not helpful in diagnosing a problem.

There is no cure, per se, of EoE.  Your body has signalled an immune reaction to something, and this sensitivity will never change.  (Allergic conditions can be outgrown, but not intolerance.)  You either eat what you want and continue corticosteroid therapy the rest of your life, or you eliminate the antagonists from your diet.  It is possible that food intolerance is behind your reflux, as well.  I am still investigating this connection in myself.

-Bruce

"Although their clinical and pathologic features may overlap, GERD and eosinophilic esophagitis appear to have different genetic profiles. In a recent pediatric study, Blanchard et al⁸ found that genes up-regulated in eosinophilic esophagitis were markedly different than those in chronic esophagitis. This suggests that while the two diseases share a constellation of symptoms, they have a different pathogenesis. Nevertheless, because of this possible overlap, the diagnosis of eosinophilic esophagitis should be made after acid reflux has been either treated or excluded with pH testing."

http://www.ccjm.org/content/75/9/623.full

With respect to pathological responses to ingested food, there is food allergy, and food intolerance.  Food allergy produces most symptoms within 30 minutes, while a response to intolerance is subtle, and can take from 12-72 hours.  Foods usually associated with allergy are peanuts and certain "tree nuts," kiwis, etc.  Milk can also produce an allergic response, although this is uncommon.

It's important to separate "lactose intolerance" from casein intolerance.  Lactose intolerance is due to the lack of a digestive enzyme, while casein intolerance is produced because beta-casein proteins produce an immune response.  Lactose intolerance produces indigestion, while casein intolerance most likely will not.

There is a wealth of information on casein intolerance here: http://www.betacasein.org/

-Bruce

-Bruce

I understand where you're at, and how you feel.  However, I would encourage you to think "outside the box" in spite of what "doctors are saying."  I saw eight different GI doctors in private practice, a large university hospital, and the Mayo Clinic, and NONE of them mentioned diet...let alone food intolerance.  All had my symptoms laid in front of them...including the EoE diagnosis.  There have been actual studies done to see if doctors take the time to read medical journals, and keep up on new findings in their respective specialties.  A significant majority do NOT.  You must become your own advocate! 

I don't disagree that reflux can exacerbate EoE, and erosions from reflux in the esophagus can also perhaps allow environmental pathogens to enter soft tissues...creating an allergic response.  However, I think it's wise to pursue the possibility of food intolerance.

I won't go so far as to say this will help your reflux.  It might, but I'm still early into this myself.  I will say that I was quite ill, with snowballing autoimmune symptoms, all of which have reversed course.  I'm confident now if I went for an EGD and had biopsies, they would come back negative for EoE.  Some of these symptoms I attributed to reflux, like asthma and dysphagia, which are among the symptoms that are significantly improving.  So, at the very least, you may become a little more comfortable while dealing with the reflux.

Again, it's not clear which elimination diets you have tried, and if enough time passed to allow for proper evaluation.  The lion's share of intolerance issues is due to gluten and casein...so any elimination diet should start there, both at the same time.  Bare minimum 30 days.

You mention liquid diets...but these may have contained milk or whey.  Casein!

There are so many potential antibodies, that unless a doctor is looking for something specific, one could have been missed.  Another test that's sometimes useful to track down an autoimmune problem is for homocysteine levels.

I'm not promoting either of these sites, but they might be helpful.  Foodintol has enough freebies and videos to get someone started.  ALCAT offers a broad spectrum test for dozens of different antagonists, which runs between $650 and $800.  It's not covered by BC/BS here in Florida, but I understand it is covered elsewhere.

There is nothing fun about an elimination diet...believe me, I know.  I also won't claim that I know better than you or your doctors what's best for you.  But, given your diagnosis, I think you owe it to yourself to look at this more closely.  If you don't feel you have a good enough rapport with Dr. Falk to suggest more testing, or perhaps don't want to come across as challenging him, then I would suggest finding a good rheumatologist.

-Bruce

EDIT:  I was just doing some more reading this morning on B vitamins, because I've discovered that I've become deficient as a result of the gluten/casein intolerance, and found some information that's relevant here.  Acid suppression therapy can cause food intolerance in some individuals, because the lack of acid in the stomach allows undigested proteins to pass to the small intestine, where the molecules can cause damage and begin the autoimmune response.

I will never be able to prove this connection, but I never had a headache in my life until I tried PPIs three years ago.  While headache is a known side-effect of PPIs, the headaches continued after I ceased taking them, and began increasing in occurrence and severity...now a symptom of food intolerance and extreme inflammation inside my skull.  Only now after the diet, and B supplementation, am I making progress with the headaches.  B12 is a particular casualty of acid suppression, and B2 (metabolized in the small intestine) is used in migraine therapy.

Autoimmune conditions can be subtle, and insidious...

http://www.foodintol.com/

http://www.alcat.com/

Post Edited (bcfromfl) : 1/24/2013 11:19:45 AM (GMT-7)

Technically speaking, an EoE diagnosis requires a minimum of 15 eosinophils per HPF.  However, there are borderline conditions that still require treatment.  In my case, during the first EGD where it was discovered, I did have the rings.  In subsequent EGDs, and following the corticosteroid treatment, there were no rings even though the count remained roughly the same.

I just checked Wiki, and "dietary modifications to exclude food allergies" is listed as the first method of treatment.  Lord knows why I was never told this, and left to discover it on my own!  ("Allergy," in this case, I assume is meant to cover both allergies and intolerance.)

I know from my own experience, that even with a moderate count of 14, I could feel the discomfort, which is different somewhat from reflux.  With the presence of any notable density of eosinophils in the esophagus, I would proceed with treatment.  It's telling you something...don't let your doctor casually brush it aside!

Also, I would point out that the biopsy is only identifying eosinophils in one type of tissue.  Antibodies, and leukocytes, may very well be present elsewhere too.  An estimated 50 percent of EoE patients ALSO have some form of asthma.  I had asthmatic symptoms while all this was happening, and lost considerable lung function.  Those symptoms have reversed in the past six weeks, and I am continuing to marvel at how much more air I am now able to draw in.

We must be careful when evaluating symptoms that we are not overlooking something important, either because a doctor tells us it is not so, or because it requires us to accept a significant change in behavior.  In my case, for all these years I was blaming some symptoms on reflux which, apparently, are due to food intolerance.  Is the intolerance also behind the reflux?  That remains to be seen...

-Bruce