EE and/or Mast Cell Disorders in Adults

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Ciel:
Based on everything I have read I do not believe I have EE, however I have many issues with food and eating and have been dealing with pain with eating for years. It's not consistent. My GI doc wants to rule out EE even though I don't have any of the classic symptoms. I have disordered eating patterns and a tendency to avoid eating but I sometimes have pain even when I don't eat.

I am not typical when it comes to allergy testing either. I skin test negative to everything, barely react to the control even. However injuries to my skin sometimes welt excessively and I get hives for seemingly no reason sometimes (usually with temperature changes but sometimes food). Despite negative allergy skin tests I have a history of anaphylactic reactions (presenting without hives). Never had a blood test.

I have asthma but it mostly non-atopic than triggered by overt allergens. There are allergens that are problems, however this is one more thing that doesn't fit in the 'typical' category.

I was tested for Celiac disease and the results were in the no-man's-land between negative and positive, however I'd been off gluten for months before doing the test. The biopsies were clean (again off gluten for almost a year by that point but ate gluten for a short period before the scope). I respond to a gluten free diet. I have a family history of Celiac disease. I have the skin symptoms.

So the idea now is that gluten may be an EE trigger instead of Celiac disease BUT the scope I had years ago did not show any signs of EE nor has any bloodwork ever shown elevated eosinophils in CBC tests. I don't know if it can happen like allergy testing has been for me -- where I test negative but have documented anaphylactic reactions to peanuts and likely shrimp. I sometimes have some trouble swallowing properly but the biggest thing is the pain that can be severe and somewhat debilitating at times.

I am so confused and frustrated. It feels like nothing with me ever makes sense.

I'd be glad to hear from other adults diagnosed with EE and hear what symptoms they had leading to diagnosis. I know we have a few adults around here that will hopefully read this and have a chance to respond.

(Edited to change the thread title.)

StridAst:
Hi there. I'm sorry to hear about your problems. The most frustrating thing about this kind of thing is the uncertainty. That's for sure!

I was diagnosed with EE back in February. I'm 40 years old. Had trouble swallowing for years. Along with random chest pain intermittently I once went to the Er for the chest pain when it started about 19 years ago, among other tests they ran was giving me some thick white substance to drink, the pain went away. They told me that the drink was an anaesthetic and since it worked, I just had heartburn and they sent me on my way. Tums, prilosec etc never really helped much.

Last year I started having major food allergy issues. Hives from shoulders to toe's for a week and a half etc. One incident where attempting to swallow a fairly small bite of a wrap that had hummus in it resulted in my throat closing completely off. I couldn't swallow water to wash it down. Trying caused intense pain. Scared the crap out of me. Vomiting set in after 10 min or so and cleared the blockage. I felt exhausted after, and was shaking. This scared me enough to go in to see an allergist. Tested positive for plenty of allergies and then some, but I had to get blood tests done for the most part. I'm the opposite of you. My skin reacts to everything. Including the negative control (saline)
The allergist referred me to a GI doctor for the scope and biopsy. EE was confirmed. My throat lacks the rings that the majority of EE patients have. There's actually several possible throat types. 5 or 6 I think 3 if which have rings.

My throat has the inflammatory type. The throat scope shows a throat that looks a bit bumpy with larger bumps that look white at the top. As I understand it, long term exposure to food allergies could still cause my throat to develop the fibrous type (rings) but the tissue right now is responding to the presence of the eosinophils by getting hyper inflamed when exposed to severe allergens. So it swelled shut on me with that bite of wrap, rather than getting caught on a ringed stricture. I.e. swelled shut in the time it took to take the bite, chew and swallow, then try to find a drink because I could feel it was stuck all in all maybe 30-45 seconds, counting time to chew.

One thing to remember about EE, is without a biopsy a throat scope is NOT definitive. The biopsy flat out measures the count of eosinophils in your esophagus. Their presence in large quantities is what the condition is named after of course. From the sound of your symptoms, I'd recommend getting another throat scope and thus time a biopsy. And get some blood tests on your allergies!

EDIT: I thought I'd add that I've heard that there are even people diagnosed with EE who had completely normal looking esophagus at the time of the biopsies. Definitely the minority there, but entirely possible.

Ciel:
Thanks StridAst, this is helpful!

I have pretty severe heartburn (GERD) and am on long term PPI therapy for that but even with taking meds 2x daily I still have breakthrough symptoms sometimes. Usually after swallowing meds or something.

I haven't had a scope to specifically look at the esophagus and take biopsies. I've had a gastroscopy to biopsy the small intestine and I just assume that on the way in they would notice if there was anything obviously wrong with my esophagus.

My blood work is completely normal for eosinophils even with a history of allergic reactions. If there were an excess of eosinophils in the tissue, wouldn't it show up in my blood too??

Your comments on chest pain resonate with me. My GP thinks it is reflux. This is my big issue -- the pain.

The difficulty with swallowing is not getting stuck for me, it is more that I am feeling it go slowly down all the way.

StridAst:
I can tell you eosinophils in the esophagus can't be detected by blood tests. They are out of the blood stream clustered the esophageal tissues. Otherwise blood tests could save a lot of people from the expensive scope and biopsies. As for the feeling of food going slowly down all the way, I get that too anytime I eat something I shouldn't have. As I got the food allergies pinned down, largely due to the IgE blood testing, both the pain went away for the most part, and so has most of the difficulty swallowing. I've only had 6 or 7 incidents with food getting really stuck, and only the one where I seriously couldn't dislodge it no matter what.

Most of my EE symptoms have been the slow annoying swallowing and the chest pain. I notice symptoms can last for hours of increased difficulty swallowing, and a feeling kind of like a sore throat after eating something that I am mildly allergic to, or chest pain if I eat something that had a higher IgE number (anything over a 2 in my case. All my IgE tests have fairly low numbers despite the severity of the symptoms)

You mentioned a celiac test that was inconclusive. Was it low IgA?

It's possible btw to be allergic to the medication you are taking, without being allergic to the drug itself. All of the other crap that makes up the pill came from somewhere, soy is a common substance used in many chemicals, and also a common allergen. Could be why you get chest pain closer to when the medication is taken. (If it's EE) very worth ruling out imho.