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Author Topic: EE and/or Mast Cell Disorders in Adults  (Read 2199 times)

Description: Need some brain power with this

Offline Ciel

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EE and/or Mast Cell Disorders in Adults
« on: October 16, 2016, 03:40:41 PM »
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.)
« Last Edit: August 01, 2017, 10:18:20 AM by Ciel »

Offline StridAst

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Re: Eosinophilic Esophagitis (EE) in Adults
« Reply #1 on: October 16, 2016, 04:53:24 PM »
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. 
« Last Edit: October 16, 2016, 05:09:45 PM by StridAst »
StridAst

Reactions to: chickpeas, peanuts, onion, garlic, sunflower, safflower, peas, cherry, almonds and probably soy
Tested positive for, allergy unconfirmed:  beef, carrots, beans, milk, apples, raspberry.
Asthma, EE also

Offline Ciel

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EE in Adults
« Reply #2 on: October 17, 2016, 09:38:28 AM »
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.

Offline StridAst

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Re: Eosinophilic Esophagitis (EE) in Adults
« Reply #3 on: October 17, 2016, 10:28:16 PM »
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.
StridAst

Reactions to: chickpeas, peanuts, onion, garlic, sunflower, safflower, peas, cherry, almonds and probably soy
Tested positive for, allergy unconfirmed:  beef, carrots, beans, milk, apples, raspberry.
Asthma, EE also

Offline Ciel

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Re: EE in Adults
« Reply #4 on: October 18, 2016, 07:54:49 AM »
This is very helpful, thank you!

Offline allergyadventure

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Re: EE in Adults
« Reply #5 on: October 19, 2016, 09:02:47 PM »
You've gotten some good information from StridAst. My understanding is that EE can only be diagnosed with a biospy of the esophagus while one is already taking a PPI. Nothing else is specific for EE, because there are other non-allergic conditions that can cause eosinophils in the esophagus (like GERD).

I was diagnosed with EE three years ago in my early 30s. I'd been having symptoms for about five years prior to diagnosis. Mostly it was difficulty swallowing that regularly resulted in food getting completely stuck in my throat mid-meal. My worst episodes would have my throat swelling shut so that food nor water would go down. These episodes would last up to an hour or more at times, and several times I nearly went to the ER (probably should have) but managed to vomit up enough of the food that I could drink enough water to force the rest down. Very painful and scary.

I felt my best when I eliminated all top allergens. But in reality that was extremely hard (especially because I also manage Type 1 diabetes and so try to eat a low-carb diet), and the only foods that I truly seem to react to in a major way (as in can hardly swallow after exposure) are wheat and milk. So at the moment those are what I avoid strictly, and I accept some mild difficulty swallowing and acid reflux most of the time. My allergist did IgE testing and that comes back low-positive for almost every food (my one anaphylactic food allergy comes back very high). Skin testing is negative for most foods and borderline positive for others, again except for my anaphylactic allergy that comes back very positive.

When I react to food with EE it sometimes starts as I'm eating and sometimes starts a few hours later. Reactions usually consist of trouble swallowing (food going slow or needing water to help force it down), pain when swallowing (as if I can feel the food scraping the sides of my throat), acid reflux, stomach pain, sore or irritated throat even when not eating (and my throat just feeling "funny" all the time, like it's swollen), and also some symptoms that seem like mild IgE symptoms like randomly breaking out in hives, mouth burning or tingling, or getting an upset stomach shortly after eating. One thing I do notice is that once I react to something, *everything* is hard to swallow for at least a week, even if they're foods I'm not allergic to.

I have never had raised eosinophils in my blood. I don't think that's common nor necessary with EE. I've also been told that skin tests and IgE blood tests don't necessarily pick up on foods that will trigger EE, because EE reactions do not really involve IgE antibodies and there's no known way to test for EE allergens.

I hope that you are able to get to the bottom of your symptoms. If there's one thing I've become utterly convinced of over the past few years, it's that IgE reactions and anaphylaxis are only one type of food allergy, and in a way they are the simpliest and most straightforward. I think there are a lot of food allergies/reactions, like EE, that medicine is only beginning to understand.
Anaphylaxis to potato
Eosinophilic esophagitis (major triggers are wheat and milk)
Allergic to trees, grass, weeds, dust & dust mites, cats, dogs, horses, feathers, tobacco, nickel
Asthma & eczema

Offline StridAst

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Re: EE in Adults
« Reply #6 on: October 21, 2016, 10:04:39 AM »

I also been told that skin tests and IgE blood tests don't necessarily pick up on foods that will trigger EE, because EE reactions do not really involve IgE antibodies and there's no known way to test for EE allergens.

This makes way too much sense. I'm surprised my allergist and GI dr never mentioned it.  I react to wheat. Mildly as far as my EE goes, but no test showed up positive for wheat. A couple other things too.  Though everything I tested positive for with allergy tests does indeed trigger my EE. 

I like to think of EE like asthma in the esophagus. Any exposure to triggers is bad, once exposed the reactions persist for quite a while after, with all different severities depending on how strongly I react to the trigger. OAS allergies are still triggers, so while I don't need to worry about anaphylaxis from eating pears, just a mouth that feels like it's being horribly tickled somehow, it's still a medium trigger food for my EE

Like allergyadventure said, to determine EE, you need to be on a PPI, and get the scope with biopsy. I was put on prilosec for I think 3 weeks straight might have been 4. I remember thinking it was much linger than the 2 weeks straight that had been the most I took in a row before, prior to the scope.
StridAst

Reactions to: chickpeas, peanuts, onion, garlic, sunflower, safflower, peas, cherry, almonds and probably soy
Tested positive for, allergy unconfirmed:  beef, carrots, beans, milk, apples, raspberry.
Asthma, EE also

Offline StridAst

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Re: EE in Adults
« Reply #7 on: November 08, 2016, 10:27:31 PM »
I can personally confirm that eosinophils being normal in the blood have no bearing on if you have EE or not.  I just had to have a complete blood count test done with auto differential.  My eosinophils count was within the normal range. Though EE was confirmed for me with a scope and biopsy back in February.  In case this is ever relevant to anyone.
StridAst

Reactions to: chickpeas, peanuts, onion, garlic, sunflower, safflower, peas, cherry, almonds and probably soy
Tested positive for, allergy unconfirmed:  beef, carrots, beans, milk, apples, raspberry.
Asthma, EE also

Offline krasota

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Re: EE in Adults
« Reply #8 on: November 09, 2016, 12:55:58 AM »
Have you tried swallowing cromolyn, Ciel?  I'm trialing it now and have seen dramatic improvement with my GERD and IBS-D, despite biopsies not indicating EE or EG. 

I think in a few years, they'll be more comfortable labeling us with mast cell something or other issues.  Right now it's still too nebulous.
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DS (04/07) eggs (baked okay now!)
DD (03/12) eggs (small dose baked), stevia
DH histamine intolerance
Me?  Some days it seems like everything.

Offline StridAst

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Re: EE in Adults
« Reply #9 on: November 09, 2016, 10:30:10 AM »
Ironically it's mast cell disorder things I'm being tested for. The CBC and metabolic panels are simply to rule out other possibilities.  Still waiting on the tryptase test results.  But in reading up on them and EE I've found that a: eosinophilic disorders often occur with mast cell disorders. And b: Eosinophilic disorder patients typically have mast cells paired with the Eosinophils.

https://www.ncbi.nlm.nih.gov/pubmed/20538331

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4083463/

So cromolyn, being a mast cell stabilizer, makes sense.  I'd probably want to start it right now myself but I don't want to risk anything that might interfere with diagnosis in any way. Is gastrocrom over the counter, or prescription only?
StridAst

Reactions to: chickpeas, peanuts, onion, garlic, sunflower, safflower, peas, cherry, almonds and probably soy
Tested positive for, allergy unconfirmed:  beef, carrots, beans, milk, apples, raspberry.
Asthma, EE also

Offline krasota

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Re: EE in Adults
« Reply #10 on: November 09, 2016, 04:19:27 PM »
Prescription-only for oral use.  Cromolyn sodium, aka Gastrocrom. 

I should actually let my allergist know the dramatic results.  He may want me to back off and do some tests, but I'm hoping he can just tell me to get on with my bad self and feel better. 

I still need to find a compounding pharmacy for topical cromolyn.  I can't use Elidel forever, but there aren't the same kind of limits on cromolyn. (I haven't called yet. One thing at a time.)
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DS (04/07) eggs (baked okay now!)
DD (03/12) eggs (small dose baked), stevia
DH histamine intolerance
Me?  Some days it seems like everything.

Offline Ciel

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Re: EE in Adults
« Reply #11 on: November 30, 2016, 03:43:02 PM »
Have you tried swallowing cromolyn, Ciel?  I'm trialing it now and have seen dramatic improvement with my GERD and IBS-D, despite biopsies not indicating EE or EG. 

I think in a few years, they'll be more comfortable labeling us with mast cell something or other issues.  Right now it's still too nebulous.

No, I've never tried swallowing chromolyn. I read a bit about it and it sounds promising. I'm going to ask about it. I'm glad it is helping you Krasota!

Thanks so much for your posts Krasota, StridAst and AllergyAdventure. I got a referral to a new allergist and we're going to aggressively look at my history, reactions, test results and try to pinpoint what the heck is going on with me. I'm going to push for food challenges if blood work is negative because my skin tests are negative despite anaphylactic reactions. So what if it's not IgE antibodies to a food but a mast cell disorder? (I don't know if that is possible, I'm just thinking). I'm really going to push looking into EE and Mast Cell Disorders when I see the allergist. This is all very confusing and frustrating.

I've been put on a elimination diet to see if that helps. I still have the abdominal pain frequently, and I finally gave in and allowed my Naturopath to do IgG intolerance testing. I figure that it can't hurt at this point at least to try it and see if I feel better.

Re: Mast cell disorders: I react to physical stimulation - cold, heat, exercise-- these cause hives, swelling, flushing, etc.. I react to perfumes and strong chemical scents with a GI response, asthma. I react to certain foods, mildly to latex, acetaminophen, ASA. Things like this might be explained if there is a mast cell disorder. That would be nice. Knowing, not the specific diagnosis. ;)

Offline Ciel

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Re: EE in Adults
« Reply #12 on: November 30, 2016, 03:53:22 PM »
PPIs -- I have been taking a prescription strength one twice daily for years. We had to keep trying stronger ones because they wouldn't work. I later learned that I am an ultra rapid metabolizer for PPIs. I still have bad reflux on occasion, even while on meds, but it is much better controlled than before.

I'm also pushing to re-do Celiac testing. Just hoping to sort it out once and for all.

Online spacecanada

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Re: EE in Adults
« Reply #13 on: March 01, 2017, 01:11:25 PM »
My allergist appointment today ended with a referral to be tested and scoped for EE.   :-[  My allergist described it like asthma of the eonsophagaus.  I don't have heartburn, reflux, or IBD that I am aware of and I couldn't relate to any of those symptoms as my allergist described it, and it happens to very specific and atypical foods, so he wants to explore the possibility of EE.

I was just hoping but would be another allergy that I already know how to deal with.  (Or just a figment of my imagination - nothing wrong at all, wouldn't that be nice!)

Where can I learn more about this scope process? I have a sensitive gag reflex and the idea of anything down my throat makes me gag enough already.  I know I will get more details when I see the specialist, but I also have a dissociation disorder and may not remember much of my appointment. (I was very dissociated at my allergist appointment today and had a difficult time answering the allergist's questions.). My husband will come with me.
anaphylaxis to tree nuts, peanuts, and potatoes; severe dairy intolerance; vegan (preference)
family members allergic to dairy, egg, peanut, sesame, shellfish

Offline krasota

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Re: EE in Adults
« Reply #14 on: March 01, 2017, 10:52:19 PM »
It's an upper endoscopy.  The ones I've had involved sedation.  They can also spray your throat with a numbing spray (I'm allergic, so we skip it).  I did wake up during my last one because despite extra warning, the hospital didn't make sure they had their ducks in a row with anaesthesia (allergies again).  I recommend not remembering it.  But the sensations I felt weren't the endoscopy--they were the meds that were not working well for me.  Ugh.
--
DS (04/07) eggs (baked okay now!)
DD (03/12) eggs (small dose baked), stevia
DH histamine intolerance
Me?  Some days it seems like everything.