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Old 01-28-2009, 06:47 PM   #1
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jamkat HB User
Eosinophilic Esophagitis Relief of Symptoms

Hi, I am 38 and have had EE for four years however was only diagnosed two years ago. I was given a fantastic tip by my specialist which helps me swallow food if I feel that something is about to get stuck and that is to drink carbonated drinks. The bubbles seem to relax my throat muscles which allows the food to pass. My specialist said that a number of his patients drank Coke but I find that the bubbles are too small and fizzy so prefer to drink sparkling mineral water or soda water as it doesn't have the sugar (as well as bigger bubbles) and has the same effect. It is not a cure but it has been my lifesaver over the past two years as straight milk or water do not have the same effect.

Another thing which I have now done is to keep an information print out about EE in my car and at home as once I had to drive myself to hospital and then try to explain to the triage nurse that even though I could still breath that I had some bread stuck in my throat in between gaging and regurgitating on my own saliva and suffering incrediable chest pains. Another time I had to call an ambulance to my home as was looking after my children so could not drive myself to hospital and again had to explain that I had some chicken stuck in my throat. The paramedic then suggested that I swallow some bread and drink some milk so again I had to explain (in between the above terrifying symptoms) what EE was and that bread would possibly be the worst thing I could eat ontop of chicken as then I would have a complete blockage.

I haven't cut anything out of my diet but am more aware of what I can and can't eat now eg white bread or bread with a hard crust bread, rice, pasta and meat will always cause problems and if I do choose to eat them have to do so in very tiny mouthfuls making sure that each bite has been fully digested. I am thinking of trying a gluten free diet as am interested to see if it makes a difference but can't give up meat however I know what cuts I can eat in very small well chewed pieces eg chicken leg is OK but breast is banned, red meat that is very tender or marbled with fat is OK but well done and tuff is definalty off the menu. When I go out I usually always choose a fish or seafood option as the likelyhood of me having a problem is greatly reduced compared to meat.

I also now know that half my problem is anxiety. As soon as I swallow a mouthful that I know is too big or the wrong type of food and can feel the sensation of food getting stuck, I start to tense up and that makes the problem worse so having a carbonated drink close by is my safety net as it seem to relax the muscles in my esophagus. It doesn't always work and when I do have an attack that the bubbles won't shift I have to remove myself from the situation and calm myself down and usually try to induce vomiting to get it unstuck (horrible especially if you are out) and then try very small sips of mineral water. I am scared but have learnt to live with EE a bit better now. I am thinking of trying Flovent again (as didn't use it when first diagnosed with EE as was breast feeding) but don't like the idea of having to take it for the rest of my life but as my Doctor said many people have to take different medications for their entire lives (but not with the unfortunatle possible side effect of thrush). I also now know that when I eat I have to be in a calm disposition eg I can't eat on the run or in a highly stressful situation eg at a children's party as my underlying anxiety must mean that my throat is already slighly closed off and I know that as soon as I take a bite of anything it will get stuck. It is hard to explain but have just from experience many, many times.

I do have the usual correlation with childhood asthma and hayfever. I had had a allergy skin test done and my main allogen was housedust which horrified me as I think that I have a very clean house but the Doctor said that it could have been from our carpet so we have gone back to floorboards but it hasn't given me any relief from my EE. It is such a mysterious illness especially as its onset was so sudden with me (I was eating a piece of sushi on a train and thought I was going to choke to death) and out of the blue.

There are a few positives to have come out of having EE though. I now eat all my food very slowly (which would make my mother proud), I choose unprocessed food wherever possible as seem to be able to swallow whole foods that are not made with preservatives much better than highly processed food and can always accept a glass of champagne when I am out because it has bubbles.

Good luck to everyone out there with EE, it given me comfort to know that I am not alone and hopefully they will find a cure for us soon.

 
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Old 02-06-2009, 08:13 AM   #2
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jmoyni HB User
Re: Eosinophilic Esophagitis Relief of Symptoms

jamkat-

I'm not the type of person who typically posts on these boards, but after being diagnosed with EE last summer, and suffering with it for much longer before i finally went to a doctor with it, I thought I would post something on the off chance you or someone else might find it helpful.

during my first visit they put a scope down my esophogus for a look around, and noted that the opening to my stomach was very narrow, but not blocked, which helped explain why I have had issues with food impaction for almost 20 years (always when I am eating too quickly, and talking during meals as well- although i never had to go to the hospital to have food extracted). They originally thought I just had a narrow esophogus (which is probably part of the problem).

second time they scoped, they stretched, and took a biopsy as well, which confirmed EE. was on nexium for several months (and continue to have a prescription, although I don't take it every day now), and was on fluticosone for 8-10 weeks (with 2 flare ups of thrush- a less than pleasant side effect).

I don't think I'll ever know for sure what has given me relief, since I've turned my diet upside-down, put a hepafilter in my office, and stopped drinking carbonated drinks all together, but I've been (knock on wood) almost trouble free for the past several weeks (i've been off fluticosone) for over two months.

Could never really get a straight answer from my doctor, other than, most people respond to fluticosone, and finding an allergy in an adult is very difficult (just about everyone is allergic to house dust- I'm sure your house must is cleaner than most). He says he never saw this 15 years ago, but it is 10 times more common now (but still relatively uncommon).

Just a suggestion, but I'm convinced that giving up carbonated drinks is what did it for me (and it may have been fresca in particular- timing is fuzzy in my head, but i think i started it around the time or a few months before I started feeling symptoms). After being a heavy carbonated soda drinker all my life, it may have finally caught up with me. When your esophogus gets as irritated as mine had been, it isn't going to feel better overnight, but might be worth a shot.

I'm sure your specialist knows more than I do, but the last thing i felt like doing when i had food impacted (again, knock on wood- that has gone away- although i'm still very careful to make sure I drink a ton of liquid when i'm eating to smooth the way down to the stomach), or was having a flare-up (with chest pain and difficulty catching my breath), was to drink anything carbonated.

hope this is helpful, and good luck feeling better.



Quote:
Originally Posted by jamkat View Post
Hi, I am 38 and have had EE for four years however was only diagnosed two years ago. I was given a fantastic tip by my specialist which helps me swallow food if I feel that something is about to get stuck and that is to drink carbonated drinks. The bubbles seem to relax my throat muscles which allows the food to pass. My specialist said that a number of his patients drank Coke but I find that the bubbles are too small and fizzy so prefer to drink sparkling mineral water or soda water as it doesn't have the sugar (as well as bigger bubbles) and has the same effect. It is not a cure but it has been my lifesaver over the past two years as straight milk or water do not have the same effect.

Another thing which I have now done is to keep an information print out about EE in my car and at home as once I had to drive myself to hospital and then try to explain to the triage nurse that even though I could still breath that I had some bread stuck in my throat in between gaging and regurgitating on my own saliva and suffering incrediable chest pains. Another time I had to call an ambulance to my home as was looking after my children so could not drive myself to hospital and again had to explain that I had some chicken stuck in my throat. The paramedic then suggested that I swallow some bread and drink some milk so again I had to explain (in between the above terrifying symptoms) what EE was and that bread would possibly be the worst thing I could eat ontop of chicken as then I would have a complete blockage.

I haven't cut anything out of my diet but am more aware of what I can and can't eat now eg white bread or bread with a hard crust bread, rice, pasta and meat will always cause problems and if I do choose to eat them have to do so in very tiny mouthfuls making sure that each bite has been fully digested. I am thinking of trying a gluten free diet as am interested to see if it makes a difference but can't give up meat however I know what cuts I can eat in very small well chewed pieces eg chicken leg is OK but breast is banned, red meat that is very tender or marbled with fat is OK but well done and tuff is definalty off the menu. When I go out I usually always choose a fish or seafood option as the likelyhood of me having a problem is greatly reduced compared to meat.

I also now know that half my problem is anxiety. As soon as I swallow a mouthful that I know is too big or the wrong type of food and can feel the sensation of food getting stuck, I start to tense up and that makes the problem worse so having a carbonated drink close by is my safety net as it seem to relax the muscles in my esophagus. It doesn't always work and when I do have an attack that the bubbles won't shift I have to remove myself from the situation and calm myself down and usually try to induce vomiting to get it unstuck (horrible especially if you are out) and then try very small sips of mineral water. I am scared but have learnt to live with EE a bit better now. I am thinking of trying Flovent again (as didn't use it when first diagnosed with EE as was breast feeding) but don't like the idea of having to take it for the rest of my life but as my Doctor said many people have to take different medications for their entire lives (but not with the unfortunatle possible side effect of thrush). I also now know that when I eat I have to be in a calm disposition eg I can't eat on the run or in a highly stressful situation eg at a children's party as my underlying anxiety must mean that my throat is already slighly closed off and I know that as soon as I take a bite of anything it will get stuck. It is hard to explain but have just from experience many, many times.

I do have the usual correlation with childhood asthma and hayfever. I had had a allergy skin test done and my main allogen was housedust which horrified me as I think that I have a very clean house but the Doctor said that it could have been from our carpet so we have gone back to floorboards but it hasn't given me any relief from my EE. It is such a mysterious illness especially as its onset was so sudden with me (I was eating a piece of sushi on a train and thought I was going to choke to death) and out of the blue.

There are a few positives to have come out of having EE though. I now eat all my food very slowly (which would make my mother proud), I choose unprocessed food wherever possible as seem to be able to swallow whole foods that are not made with preservatives much better than highly processed food and can always accept a glass of champagne when I am out because it has bubbles.

Good luck to everyone out there with EE, it given me comfort to know that I am not alone and hopefully they will find a cure for us soon.

 
Old 04-26-2009, 11:37 AM   #3
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dragonfly57 HB User
Re: Eosinophilic Esophagitis Relief of Symptoms

I have EE, found it when food was getting stuck in chest/throat and felt like I was having a heart attack. Had the scope, etc. The Flovent isn't helping me as much as my doctor would prefer. I don't drink a lot of soft drinks, but the GI said to avoid all artificial sugars because it can cause problems with the colon and bladder. I keep Benadryl dissolve strips with me all the time. When I pop one or two (if necessary), the food dissolves that is stopped up and it really helps me.

I have had allergy testing. My GI doctor says this is always caused by food allergies. The allergists say I am allergic to over 25 foods! Obviously, this has been very stressful. The foods I am allergic to are foods I eat all the time. You might try seeing an allergist and see if it will help. I definitely know some of the foods cause my throat to swell and that aggravates the problem.
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Old 07-26-2010, 07:36 AM   #4
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begs2differ HB User
Re: Eosinophilic Esophagitis Relief of Symptoms

I ended up reading this page during a food impaction episode last week. I have been diagnosed with EE and am in the process of trying to ID food allergies and potential treatment options.

I was eating a steak fillet and about two (small, well chewed) bites in, a chunk of red meat got caught in my throat. Having dealt with the situation before (ended in an emergency room visit, endoscopy and diagnosis), I tried to stay calm. But water and diet coke didn't work, just came back up and I was experiencing the normal discomfort and had to spit out my saliva.

I walked to the drugstore and got some of the benadryl dissolve strips, but they didn't seem to work either. (How is that supposed to work? Do the stripes then try some water later?) Then I tried something my mom recommended -- a milkshake. I haven't seen it online, so it is something to consider.

I wasn't near a fast food place, which is the kind of shake that supposedly works best, but got some sort of bottled Hershey's milkshake from the fridge at the drugstore. It was slightly thicker than chocolate milk. I took a big gulp of it, held it in my mouth for a second and the swallowed it -- really concentrating on the swallowing bit, moving my muscles in an exaggerated way. It felt like it went down, coated the meat and pushed it down.

I also heard you could end up throwing up the milkshake, per other liquids, but it is probably worth trying again if you do. I think I got lucky getting it in one swig. I think it might be the combination of the cold (relaxing the throat), weight of the liquid (weighs more than water/coke), and the lubrication of the shake (helps the impacted food slide down). Whatever it was, it worked after a few hours of suffering. Definitely something to try, because that food impaction business is awful. Good luck.

Last edited by begs2differ; 07-26-2010 at 07:44 AM.

 
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Old 07-31-2010, 07:06 PM   #5
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Re: Eosinophilic Esophagitis Relief of Symptoms

Sometimes I have to take 2 of the Benadryl dissolve strips if the problem is severe, the next thing would be the EpiPen and then EMS. The dissolve strips literally dissolve on your tongue. I find it difficult to understand how anyone can swallow anything, fluid included during an "attack."

I am scheduled for my second endoscopy, but this time they will do the dilation as well as another biopsy.

I did find out that Bechet's Disease has similar pathology, but the erosions are larger. Per the recommendation of another doctor, the pathologist is aware of this possibility and will double check it when the biopsies are reviewed.

I have had more things added to my do not eat list. I don't understand how I am not losing weight due to everything I have cut out. My husband will attest to the fact of everything I have cut out because it is getting very boring to try to find anything to eat.

 
Old 07-31-2010, 07:10 PM   #6
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Re: Eosinophilic Esophagitis Relief of Symptoms

I forgot - - -

I get research reports emailed to me on this subject. Research is now indicating a connection with Chromosome 5 in connection with this disorder.

 
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