Y U No Like EE?
July 14, 2011 4:34 PM Subscribe
Why would my allergist dismiss a possible diagnosis of eosinophilic esophagitis?
I've had an ongoing problem with esophageal pain that seems to have finally been determined to be an allergy to barley and certain kinds of yeast. I have very similar symptoms to eosinophilic esophagitis - food impaction, dysphagia, chest pain, etc. - and one of the fellows (not the allergist) who first saw me suggested that EE could be the issue.
After doing skin tests that pointed to barley and yeast, I saw my allergist for a follow-up, and when I asked him if EE was a possible root condition behind these allergies, he was dismissive, told me it would involve unpleasant tests and biopsies to diagnose, and that it wasn't worth pursuing. He came close to poking fun at the fellow who originally suggested it.
While I don't want any unpleasant tests, and I imagine just eliminating the problem food from my diet would be the prescribed treatment either way (so far, so good), I wonder why he was so dismissive of the EE route. I know it's still a poorly understood disease, but the more I read about it, the more it seems real - and perhaps something I should at least be keeping my eye on with my own body.
YANAD, YANMD - but might anyone have experience that could explain my allergist's dismissiveness? He was not particularly helpful when I talked to him myself.
I've had an ongoing problem with esophageal pain that seems to have finally been determined to be an allergy to barley and certain kinds of yeast. I have very similar symptoms to eosinophilic esophagitis - food impaction, dysphagia, chest pain, etc. - and one of the fellows (not the allergist) who first saw me suggested that EE could be the issue.
After doing skin tests that pointed to barley and yeast, I saw my allergist for a follow-up, and when I asked him if EE was a possible root condition behind these allergies, he was dismissive, told me it would involve unpleasant tests and biopsies to diagnose, and that it wasn't worth pursuing. He came close to poking fun at the fellow who originally suggested it.
While I don't want any unpleasant tests, and I imagine just eliminating the problem food from my diet would be the prescribed treatment either way (so far, so good), I wonder why he was so dismissive of the EE route. I know it's still a poorly understood disease, but the more I read about it, the more it seems real - and perhaps something I should at least be keeping my eye on with my own body.
YANAD, YANMD - but might anyone have experience that could explain my allergist's dismissiveness? He was not particularly helpful when I talked to him myself.
Because the medical benefits to the diagnosis (none, treatment would be just do what you're doing now) far outweigh the risks (biopsy, surgery). Getting a diagnosis is not, in and of itself, useful if that diagnosis is still only treated by treating the symptoms.
posted by brainmouse at 4:44 PM on July 14, 2011
posted by brainmouse at 4:44 PM on July 14, 2011
Darnit, the risks outweigh the benefits, not the other way around...
posted by brainmouse at 4:45 PM on July 14, 2011
posted by brainmouse at 4:45 PM on July 14, 2011
Even if the bedside manner leaves something to be desired, this seems to be a reasonable course of treatment, i.e. exactly the same with or without the diagnosis, which would require expensive and unpleasant tests.
It's an allergy. You're getting allergy testing and will presumably be given a regimen appropriate for the allergies which are detected.
What else do you want?
posted by valkyryn at 5:56 PM on July 14, 2011
It's an allergy. You're getting allergy testing and will presumably be given a regimen appropriate for the allergies which are detected.
What else do you want?
posted by valkyryn at 5:56 PM on July 14, 2011
Response by poster: Thanks for the replies, and I realize that he likely made the right choice. Maybe it was just a result of the allergist's bedside manner that I felt odd, but the medical fellow I talked to made it seem like EE was something to think about, and while my allergy is treated for now, if I do have EE it can develop other kinds of complications that it seems like I should be aware of. Basically, I just wanted to hear from others if there's some other reason he might have avoided considering EE (bunk science, disagreements among practitioners about the cause, medical politics, etc.) since he reacted so strongly when I asked about it.
posted by Ms. Toad at 7:00 PM on July 14, 2011
posted by Ms. Toad at 7:00 PM on July 14, 2011
Well.... Allergy testing is notoriously unreliable and, IF you have EE, your trigger foods might not show with RAST testing. If that is the case, you could eliminate your tested foods for weeks and STILL have symptoms and end up even more confused about what exactly is going on. EE is still a pretty uncommon thing and some docs seem to be dismissive of the possibility of diagnosis. If it were me, I'd find a gastroenterologist and request testing. It's the only way you are going to be able to figure out your safe foods. Biopsy, elemental diet, biopsy, add food, biopsy, ad nauseum.
I wish you luck.
posted by PorcineWithMe at 7:03 PM on July 14, 2011
I wish you luck.
posted by PorcineWithMe at 7:03 PM on July 14, 2011
Thinking about this more, the doc might have been dismissive because HE can't do the testing for you - he'd have to refer you out to a gastro. It's a bit of a crossover condition between specialties which can mean a bit of back and forth getaways docs for the patient. I urge you to get the testing done. It's an endoscopy with biopsy and is usually done under twilight sedation. Eat all of your trigger foods - if you are on an elimination diet you may biopsy normal (which would be good for you, but bad in terms of diagnosis and long term care/control).
posted by PorcineWithMe at 7:59 PM on July 14, 2011
posted by PorcineWithMe at 7:59 PM on July 14, 2011
I would encourage you to seek out a GI who has experience in treating EE.
My then 3 year old child went from a healthy boy to a very ill and constantly in pain little boy in the span of a month. While waiting for our appt with the closest children's hospital, I did some internet research and discovered EE. This was back in early 2001 and there was very little information available. I took what I could find to print off to our visit with the pediatric GI, and asked about testing for EE.
To say I was treated with condescension is putting it mildly.
Unfortunately I was intimidated by this doctor and accepted his ideas of what might be wrong with our son. Months went by trying various regimes of prescriptions and invasive tests, and my son became more and more ill. We switched hospitals; we were shuffled from specialty to specialty. The GI sent us to Neurology, who sent us to Metabolic, who sent us to Allergy, who sent us to Immunology, who sent us to Endocrine, etc etc. One by one we went from hospital to hospital, all 8 Childrens hospitals in the greater Los Angeles area. These were in some cases the department heads that were examining my son, and all were stumped.
This process lasted 4 years.
When my son was 7 and weighed only 33 lbs, nearing organ failure from chronic malnutrition ( he vomited most meals) I finally followed some advice and contacted Childrens Hospital of Philadelphia. They at the time were rated #1 childrens hospital by US News and World Report.
I sent in my son's extensive medical records from all these fabulous experts who had been so stumped, and within a couple of days received a call from the coordinator there. They scheduled us to come in immediately and booked us with Allergy and GI dept. I was so shocked. We had seen so many allergist and GIs , I was just sure my son had to be suffering from some rare disease or something. We flew from the west coast to Philadelphia, and within the first few moments of our meeting, the drs told me they were 95% sure of their diagnosis, before even examining my son! It was right there in all the medical records, all the signs and signals.
Esonophilic esophagitis.
Turns out this disorder is not so uncommon in children after all, and it is on the rise. It just wasn't being routinely diagnosed on the west coast, or really many places outside CHOP, childrens Cincinnati, and childrens Boston. ( this was in aprox 2005)
The drs in Philly helped develop the protocols that are being put into place across the country as more and more doctors are confronted with irrefutable evidence that the ulcerated patches of tissue wreaking havoc on the GI tract mucus membranes,which upon biopsy present as loaded with esonophils , these ulcerations are due to an allergic response within the body itself. Treatments like PPIs and fundoplication surgery do not solve the problem, and just living with the pain can potentially allow years of inflammation and cell changes to occur, drastically upping your odds of developing Barretts esophagus or potentially later esophageal cancer. In other words, this is something you want to take seriously, even if your situation is not nearly as dramatic and horrid as my son's was. You need to search and not stop until you find a GI who treats EE. Yes, there are biopsies involved. That honestly is the only way to actually determine the state of the tissue in your esophagus and to find out if you actually have EE. Some folks seem to have all the symptoms, but upon biopsy, there don't seem to be sufficient numbers of esonophils to make that diagnosis . Conversely, some people don't seem to suffer much pain at all, but upon scope and biopsy, their throats look like raw hamburger meat. It's really tough to know what's going on in there without the scope.
The approach that CHOP took that was so unique at the time was to treat all EE patients with joint visits to two departments. Allergy and GI. The allergist cannot perform endoscopies, and the GIs normally don't get very involved in allergy testing and diet plans. So in the case of CHOP, both departments worked in tandem. Sounds simple but you'd be surprised.
In the case of my son, therapy was begun almost immediately upon diagnosis and within 2 months he had gained nearly 15 lbs!
The drs of course did scope and biopsy him to make their diagnosis, but they also called the original hospital that had treated my son when he was 3, and had his original biopsies sent. These had been taken by the first dr, the one who had treated me with so much derision and scorn when I brought the printed off pages of info about EE to him. And there in those original biopsies, preserved in paraffin, revealed to the pathologists in Philadelphia, were sky high numbers of eosonaphils. That first dr was, and still is today , the head of the pediatric gastroenterology dept at that children's hospital. And no, I do not recommend him to friends and family!
My son continued to see the drs in Philly for several years, flying cross country for his scopes and biopsies, until a hospital here in california finally opened a whole department just for EE, with treatments based on the protocols from Cincinnati and Philly. When we go for follow ups there now, the waiting room of this clinic is just packed with kids of all ages, up on into the teens, who finally have relief for the pain and symptoms that seemed to have stumped their previous drs. So unfortunately this disorder is not at rare as some might think.
There are different types of treatments, but one must first be scoped before any specific treatment can be implemented. I would encourage you to not delay your research and chose a dr soon to begin the diagnostic process, for it can take some time. Usually you need to have a baseline scope and biopsy, while you are eating a complete diet and not avoiding any specific foods, such as in your case barley and yeast. Since EE has some similarities to auto immune disorders, it presents in a more complex way than simply an internal allergic reaction to a food or other factor. If your Dr finds upon biopsy that your case is mild, or simply acid reflux or GERD, well that would be great news. Things would be a great deal less complicated for you and you can perhaps just work on diet and PPIs in response to pain etc. If they find significant damage or need for more drastic interventions, well the sooner you address that and calm the inflammation the better for your esophageal tissues and the better for you future health in general.
Fortunately my son is doing great now, a happy 7th grader, star of his rugby and tackle football teams, and of course already taller than his mom!
posted by Rapunzel1111 at 1:53 AM on July 15, 2011 [3 favorites]
My then 3 year old child went from a healthy boy to a very ill and constantly in pain little boy in the span of a month. While waiting for our appt with the closest children's hospital, I did some internet research and discovered EE. This was back in early 2001 and there was very little information available. I took what I could find to print off to our visit with the pediatric GI, and asked about testing for EE.
To say I was treated with condescension is putting it mildly.
Unfortunately I was intimidated by this doctor and accepted his ideas of what might be wrong with our son. Months went by trying various regimes of prescriptions and invasive tests, and my son became more and more ill. We switched hospitals; we were shuffled from specialty to specialty. The GI sent us to Neurology, who sent us to Metabolic, who sent us to Allergy, who sent us to Immunology, who sent us to Endocrine, etc etc. One by one we went from hospital to hospital, all 8 Childrens hospitals in the greater Los Angeles area. These were in some cases the department heads that were examining my son, and all were stumped.
This process lasted 4 years.
When my son was 7 and weighed only 33 lbs, nearing organ failure from chronic malnutrition ( he vomited most meals) I finally followed some advice and contacted Childrens Hospital of Philadelphia. They at the time were rated #1 childrens hospital by US News and World Report.
I sent in my son's extensive medical records from all these fabulous experts who had been so stumped, and within a couple of days received a call from the coordinator there. They scheduled us to come in immediately and booked us with Allergy and GI dept. I was so shocked. We had seen so many allergist and GIs , I was just sure my son had to be suffering from some rare disease or something. We flew from the west coast to Philadelphia, and within the first few moments of our meeting, the drs told me they were 95% sure of their diagnosis, before even examining my son! It was right there in all the medical records, all the signs and signals.
Esonophilic esophagitis.
Turns out this disorder is not so uncommon in children after all, and it is on the rise. It just wasn't being routinely diagnosed on the west coast, or really many places outside CHOP, childrens Cincinnati, and childrens Boston. ( this was in aprox 2005)
The drs in Philly helped develop the protocols that are being put into place across the country as more and more doctors are confronted with irrefutable evidence that the ulcerated patches of tissue wreaking havoc on the GI tract mucus membranes,which upon biopsy present as loaded with esonophils , these ulcerations are due to an allergic response within the body itself. Treatments like PPIs and fundoplication surgery do not solve the problem, and just living with the pain can potentially allow years of inflammation and cell changes to occur, drastically upping your odds of developing Barretts esophagus or potentially later esophageal cancer. In other words, this is something you want to take seriously, even if your situation is not nearly as dramatic and horrid as my son's was. You need to search and not stop until you find a GI who treats EE. Yes, there are biopsies involved. That honestly is the only way to actually determine the state of the tissue in your esophagus and to find out if you actually have EE. Some folks seem to have all the symptoms, but upon biopsy, there don't seem to be sufficient numbers of esonophils to make that diagnosis . Conversely, some people don't seem to suffer much pain at all, but upon scope and biopsy, their throats look like raw hamburger meat. It's really tough to know what's going on in there without the scope.
The approach that CHOP took that was so unique at the time was to treat all EE patients with joint visits to two departments. Allergy and GI. The allergist cannot perform endoscopies, and the GIs normally don't get very involved in allergy testing and diet plans. So in the case of CHOP, both departments worked in tandem. Sounds simple but you'd be surprised.
In the case of my son, therapy was begun almost immediately upon diagnosis and within 2 months he had gained nearly 15 lbs!
The drs of course did scope and biopsy him to make their diagnosis, but they also called the original hospital that had treated my son when he was 3, and had his original biopsies sent. These had been taken by the first dr, the one who had treated me with so much derision and scorn when I brought the printed off pages of info about EE to him. And there in those original biopsies, preserved in paraffin, revealed to the pathologists in Philadelphia, were sky high numbers of eosonaphils. That first dr was, and still is today , the head of the pediatric gastroenterology dept at that children's hospital. And no, I do not recommend him to friends and family!
My son continued to see the drs in Philly for several years, flying cross country for his scopes and biopsies, until a hospital here in california finally opened a whole department just for EE, with treatments based on the protocols from Cincinnati and Philly. When we go for follow ups there now, the waiting room of this clinic is just packed with kids of all ages, up on into the teens, who finally have relief for the pain and symptoms that seemed to have stumped their previous drs. So unfortunately this disorder is not at rare as some might think.
There are different types of treatments, but one must first be scoped before any specific treatment can be implemented. I would encourage you to not delay your research and chose a dr soon to begin the diagnostic process, for it can take some time. Usually you need to have a baseline scope and biopsy, while you are eating a complete diet and not avoiding any specific foods, such as in your case barley and yeast. Since EE has some similarities to auto immune disorders, it presents in a more complex way than simply an internal allergic reaction to a food or other factor. If your Dr finds upon biopsy that your case is mild, or simply acid reflux or GERD, well that would be great news. Things would be a great deal less complicated for you and you can perhaps just work on diet and PPIs in response to pain etc. If they find significant damage or need for more drastic interventions, well the sooner you address that and calm the inflammation the better for your esophageal tissues and the better for you future health in general.
Fortunately my son is doing great now, a happy 7th grader, star of his rugby and tackle football teams, and of course already taller than his mom!
posted by Rapunzel1111 at 1:53 AM on July 15, 2011 [3 favorites]
Response by poster: Wow, Rapunzel, I'm sorry to hear about your plight, but glad your son made it through with an eventual diagnosis and treatment. Thanks for the range of replies - I know that EE is still a newly emerging and not well understood disease, so I appreciate the insight about my doctor.
posted by Ms. Toad at 7:19 AM on July 15, 2011
posted by Ms. Toad at 7:19 AM on July 15, 2011
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posted by phunniemee at 4:41 PM on July 14, 2011