Eosinophilic Esophagitis (EoE) with trouble swallowing?

Factual Questions
1

TLDR; then skip to the last paragraph.

My cousin has allergies. I also have allergies, so he was sharing his situation with me, and I’m trying to get a better understanding from people who have experience with Eosinophilic Esophagitis (EoE).

This is the history. For about 8 years or so he said he was having problems with constant throat-clearing feeling like he had a lot of phlegm there. This was also making his voice raspy sometimes and it started to get worse. This was a problem for him, because he does professional voice-overs.

So after dealing with this, he went to see a gastroenterologist 5 years ago. The doctor said, he needed a EDG to scope him and take a look, because there might be an issue with the esophagus.

After the EDG, the doctor said everything was fine, except the biopsy said he had EoE and prescribed him 40 MG of Omeprazole and Flovent inhaler to be swallowed twice a day. The doctor told him that the EoE was being caused by a food allergy. So he went to his allergist and got food tested. Nothing new showed up for food allergies that he didn’t already know about and had always been easily avoiding. The allergist and the gastroenterologist told him that a skin test might not catch all the foods that is causing an allergic reaction for the EoE. So the allergist put him on an elimination diet, which consisted of six foods. He told me he did this very carefully, and even ended up repeating it to see if he could produce the same results as the first time, and it wasn’t reproducible.

He continued to take the Omeprazole and the Flovent. Then after a few months things started to get better. He stopped the Flovent and continued with the Omeprazole. He told the gastroenterologist he didn’t notice any difference with or without the Flovent after several montsh so he stopped taking it.

He said after a year or so, the problem with throat-clearing and his raspy-voice pretty much went away. He said at the worst, of a scale of 1-10, it was a 10, and then and even now it was a 2. He felt that was good enough, and the gastroenterologist said he could reduce the Omeprazole to 20 MG.

So for the past several years he has been on 20 MG of Omeprazole and no problems. He sees the gastroenterologist on another matter who says, “It has been 5 years since you’ve had you last EDG, let’s get you scheduled”. He told the gastroenterologist that he wasn’t having any symptoms, but was told they need to do this to see how the EoE is and to make sure there is no narrowing and constriction which can lead to problems swallowing. He told the doctor, he never had any problems with swallowing, but doing this was to make sure he didn’t have any. He asked if there was a problem with swallowing, how would it be treated and the doctor said with swallowing Flovent. He said he talked with his allergist about this, and said trust your doctor and go ahead with the EDG.

So last month, he had the EDG. He called to tell me the results today after his office visit with the gastroenterologist. He has about the same number of EoE he had 5 years ago without being treated, even though he no longer has any symptoms for throat-clearing and the raspy-voice. However, the gastroenterologist prescribed to increase the Omeprazole from 20 MG to 40 MG, and to start swallowing Flovent twice a day, and to start The Six Food Elimination Diet for Eosinophilic Esophagitis:

He mentioned to the gastroenterologist that he tried a food elimination before, but these were done to see if they simply changed the symptoms. He said the doctor repeated that you need to find out what the food allergy that is causing the EoE. The doctor also said to pay close attention to what you eat when adding foods back.

My cousin is telling me all this and I asked him, what exactly are you being treated for at this point since you have no symptoms. His take away is that he is doing this to avoid having narrowing, and constriction which can cause problems with swallowing.

I’m posting about this, because this doesn’t make a lot of sense to me. I have allergies and my allergist treats the symptoms. I can understand the concept of prevention, but I don’t know how severe or sudden a problem with swallowing comes on for someone who has EoE.

So if you have EoE and trouble swallowing, please share your story about it. Was this something that hapended to you gradually? If you think you might be a risk of this, is it something you can monitor and then start swallowing Flovent again or some other rescue type of treatment? I’d appreciate your help in understanding this, because to me it seems like this doctor is prescribing patients aspirins because they might get a headache someday.

2

This is a major reason for treatment, since long-term inflammation of the esophagus (as occurs in untreated eosinophilic esophagitis) often causes esophageal fibrosis and narrowing. This leads to progressive difficulty in swallowing, and a risk for tears or other esophageal damage. Endoscopists can dilate a narrowed esophagus, but the procedure itself carries some risk for tears or even perforation.

My understanding is that allergen elimination diets can be difficult to follow, but sometimes there’s substantial remission if just one or two food groups can be successfully avoided. This is a pretty good overview.

I see on average a couple of biopsies or so per week that are done to rule out eosinophilic esophagitis. Since there are other potential causes for having excess eosinophils in an esophageal biopsy, clinicians correlate biopsy findings with what they see on endoscopy (including rings/furrows in the esophagus) and classic symptoms of dysphagia (i.e. food appearing to get “stuck”).

3

I do not have it, but my wife does. She started off with a local GI specialist, who basically said go figure out what your food allergy is. Went to an allergist, did elimination diets, nothing helped. Switch to a doc at University of Pennsylvania, he does baseline biopsies then puts her of a PPI (proton-pump inhibitor, I think it was omezaprole). That clears up her symptoms, plus a followup biopsy shows no eosinophils. Doc changes her diognosis from EoE to PPI-REE (proton pump inhibitor responsive eosinophilic esophagitis.

We move to Arizona, she starts seeing a GI at Mayo who was recommended by the doc at Penn. He concurs with the PPI-REE.

Bottom line is that the current research is showing that food allergies are the culprit in only a subset of EoE.

Her problem is that she has other GI distress caused by the PPI. She has been moved around to different PPIs, some are better, some worse. She basically has the choice between having swallowing difficulties and having the runs frequently. More work with the GI specialist to come.

4

I only read the last paragraph, but I can read the OP later (and probably dig up one of old posts about it).
Short story, I went from being able to dry swallow multiple big herbal supplement type pills to hoping the one tiny tic tac sized pill would go down over the course of 10-20 years.

I finally got to GI doc who wanted to scope and dilate me. Sounds good. Go for the procedure, they knocked me out, woke me back up and when I asked if I was fixed the response was ‘you’re esophogus was so narrow we couldn’t get the scope down it, we’re going to have you come back in a few weeks when we can borrow the pediatric scope from Children’s Hospital’.
Went to that appointment, and after the procedure, they told me they dilated me as much as possible, but they can only go so far and needed me to come back again.
Endo #3…looking good, but they want to do it one more time…I declined. Three in 6 weeks was plenty. However, I can swallow just about anything now. Pills that wouldn’t have had a chance go right down. A fatty piece of meat, no problem. No more worries about having to excuse myself to use the bathroom at a family dinner so I can go deal with something stuck in my throat etc.

The did take a sample and diagnose me with EE. They said they don’t know for sure what causes it, but they’re leaning towards allergies and wanted me to see an allergist. I’ve been getting allergy shots for a few years now. While my esophagus hasn’t closed back up. I don’t think anyone really knows yet if it has anything to do with the allergy shots.

5

Oh, and I just noticed the Flovent Inhaler, swallowed in the OP. I did that as well. My allergy doc had a better way, because that’s kind of a PITA. He gave me the Flovent discus. You pry it apart so it breaks open and inside there’s a long strip (kinda like the ones from cap guns) with a bunch of blisters on it. Each blister is one dose that would normally be inhaled. When you peel the backing off, you’ll find a powder that you can swallow.

I didn’t listen to this video, but it shows the inside of the inhaler.

6

You mentioned you see them, do you work as a doctor? Or you do pathology?

I can appreciate prevention, like with asthma, you want to avoid an attack or at least be prepared with a rescue inhaler if needed. So I get the concept to avoid the narrowing and the associated difficulties, but if someone never had this problem would there be a good enough warning sign to adapt the treatment instead of being on medication for the rest of your life?

7

Ok, I finally had a chance to read the OP.
My first take is that he should either find a new GI or just stop seeing this one. From my point of view, it seems he either doesn’t agree with the GI’s course of treatment or just seems to be butting heads with him. There’s nothing wrong with find a new one. In fact, if he’s having no symptoms, he could probably either just stop seeing the GI altogether and have his GI or allergist to med management as long as everything stays status quo.

OTOH, you said that he’s continuing to stay with the GI for fear of recurring phlegm issues as well as to make sure he doesn’t start to have problems swallowing…a problem he’s never had.

My very non-educated suggestion is that he could stop the Flovent, stop seeing the GI, get Omeprazole from Amazon (2 pills=40mg) if he needs them possibly even skip the allergist.

I guess, again from my POV, I don’t see why he continues to see these docs to prevent something he doesn’t have, but then doesn’t want to follow the advice they give. But, as I said before, he benefit from another GI/second opinion.

And, to come back to what you asked before. EE isn’t going to make you go from being just fine to not being able to swallow overnight. Personally, IME, I don’t see any reason why he couldn’t stop seeing the GI doc (and allergist) until symptoms show up.

8

Thanks, that’s very useful first-hand experience on this. I guess if there was a danger of it causing a chronic or permanent condition that could have been prevented by taking Flovent and Omeprazole even though there are no other symptoms it may seem logical. But it doesn’t sound like that from your experience, and from this article I found this evening written by Jeffrey Alexander, M.D., Gastroenterology, Mayo Clinic, Rochester.

Mayo Edge: Food not always the cause of eosinophilic esophagitis

And the EoE might not even be caused by food, but pollen or dust, which would really make the diet elimination thing and several more EDGs a waste of time and money.

9

Yes to both.

There are risks and costs associated with being on long-term meds, balanced against the risk of hard-to-treat or irreversible esophageal narrowing.

Fortunately, newer non-invasive methods of monitoring eosinophilic esophagitis are being developed, so hopefully it will keep getting easier to determine if treatments/diets are lowering eosinophil counts and preventing inflammatory damage.

10

Did your friend do a scratch test? That will find a lot of things. Foods, pollen, dust etc. From there he could do allergy shots if he wanted.

11

Thanks.

I see the logic to continue meds to prevent a serious problem as you describe for my cousin.

Is there is any merit to bothering with the food allergy as the possible cause for EoE? Because it sounds like the medications to treat the condition would take care of this anyway, wouldn’t it?

12

Yes, my cousin had the skin tests done by the allergist. It showed he was allergic to certain seafoods and he has avoided all of them his whole life, because if he had them it would present an immediate reaction of tongue swelling, that sort of thing. His other things he has mild allergies to are dust. Might be pollen too, I don’t recall, but he isn’t taking allergy shots now because his allergies and asthma are under control.

The thing which I find baffling about his situation, is that the only way to know if he is still having an allergy problem is to do an EDG. For me, if I have an allergic reaction to something it is often immediate. I’m thankful he isn’t having a serious problem like swallowing or anything causing him pain.

This seems puzzling to me, and from what I’ve read today, the whole EoE thing is really a new medical condition.

13

The EE could be caused by the dust or pollen, which allergy shots would help to deal with (not that I’m pushing for allergy shots, just pointing it out). The meds he’s on, omeprazole and Flovent only deal with the symptoms, they don’t prevent the problems to begin with. The Omeprazole, a heart burn/PPI med, the GI doc is likely giving him for the phlegm. Flovent is a steroid that they doc is using to reduce inflammation in his esophagus.

The trick would be to prevent the inflammation, not reduce it after the fact…but, of course, he’s not showing symptoms of that. Did the doc say his esophagus was restricted? Did they dilate it?

I dunno, I keep coming back to the thought that he should get a second opinion.

Remember, he’s a GI doc, he’s going to want to do upper/lower endoscopies, just like a surgeon will usually push for surgery.

Sometimes you just have to say ‘I’m fine right now, I’ll just wait and see hot it goes’.

14

My cousin told me there was nothing unremarkable about his first EDG from 5 years ago and the one he had last month, other than he has about the same count of EoE. The only problem he has ever had was the constant throat-clearing like it was phlegm and his voice had a raspy quality to it. So both EDGs the esophagus had no issues with narrowing, and he’s ever had a problem swallowing and no issue with heartburn. The only thing of concern is the EoE which the doctor wants to treat.

I’m encouraging him to get a second opinion from another Gastroenterologist to take a fresh look at things. He also has an appointment with his allergist to discuss all this and see what else can be done.

Yes, each speciality seems to want to treat things based on what they do, then simply refer you to someone else. He told me, at first, he was seeing an ENT on an unrelated matter and the ENT said, “What’s going on with your voice?”. The ENT put some scope (I don’t know the name) down his nose to look at this throat and the ENT said “You have a lot of gunk there” and wrote a prescription for Flonase to treat it. That’s what led him to get the first EDG 5 years ago. He said the allergist said using Flonase to treat that would have only mildly improved it.

His allergist told him, what my allergist has told me over the years, which is that sometimes allergies go away on their own and they come back. In either case they don’t know why.

Treating the root cause would be best if it could be determined. Too bad the skin tests don’t detect what is needed for this to know for sure. Cause the allergy could be to something that isn’t showing up.

15

I heard from my cousin, so I thought I would give an update. Perhaps this thread would be helpful for someone else.

He saw a specialist in EoE. This doctor reviewed all the medical records and addressed his concerns.

Apparently, the diagnoses of this actually being EoE is questionable by this doctor he told him. First of all, throat cleaning isn’t something you would normally have someone go through an EGD for. Also, he felt treating it with something not confirmed with omeprazole, swallowing Flovent while simultaneously doing the allergy elimination wasn’t a good idea. He said you can’t determine which of the allergy elimination would work since the patient was already being treated with omeprazole and Flovent. The doctor also said the previous biopsies were not done in the right replace and didn’t gather enough samples to diagnose EoE. That’s the gist of it from what I remember. The doctor said the only way to truly determine if this was EoE or not, was to do a EGD and this time have the biopsies done in the right placed with right number of samples.

The doctor told him then they could determine if he really has EoE or not. If he does, it could be treated with low dosage medication. The reason to treat it even though he has no symptoms would be to prevent scarring and narrowing of the esophagus along with the unpleasant symptoms.

This is what I remember from the conversation he told me. I’m not a medical professional.

I think what this shows is that not all GI people know how to treat EoE or even know how to properly diagnose it. So anyone out there with EoE issues should look for someone who is a specialist in EoE. I do hope this helps others!

16

While we are updating, my wife’s GI (actually the physician’s assistant that work with the GI doctor) came up with the idea of trying her on colestipol to control the diarrhea. Colestipol binds to bile acids in the gut; since my wife had her gall bladder removed decades ago, the thought is that for some reason the PPI is triggering bile overproduction and without a gall bladder the bile goes directly into the small intestine. Colestipol sequesters the bile so that is passes through the gut without adverse effect. So far she is seeing a great improvement in her diarrhea, which in turn allows her to take her PPI on a daily basis, which has eliminated her swallowing problem.