Breathing problems with 99% of foods despite negative allergy test. Malnutrition

[Josh]

I'm desperate for some help. Right now I'm only eating pork, chicken, and steak. Losing a lot of weight despite being thin. Extreme fatigue.

I got an allergy test last week (skin prick). Egg, shellfish, and watermelon came back positive but I already avoid those. Any grains (potato, corn, rice, etc), any fruits or veggies, any drinks besides water my chest and throat get very tight. I feel pressure and a slight wheeze. Oxygen never falls. I usually freak out and take a couple benadryl. The breathing gets very very tight.

I keep trying to eat things besides chicken and pork, but every time I do my breathing gets tight. I noticed the more I eat of that food, the harder it is to breathe. If I eat one chip its bearible. 3 or 4 really tight. Also the slower I eat (like 5 min gaps per bite) its not as bad. I don't think a true allergy response works like that so I'm not sure what to think.

I feel crazy. Trying to tell myself its just anxiety. But it always happens when I eat. I've tried every breathing exercise :/

[starlight]

My first thoughts are GERD (acid reflux can cause symptoms that feel like/trigger asthma) and Eosinophilic esophagitis. Ask your doctor(s) about testing and/or medication for those.

[lakeswimr]

What you are describing sounds to me like something real but also like something that is probably different than what you think.  Allergy testing, no matter what type, can't tell you if you are allergic to a food or not.  Depending on what test you had, the test might just be junk and entirely meaningless.  Tests that allergists use also are not that reliable.  they have extremely high false positive rates. 

I would want to see a very good allergist and very good GI doctor.  You could have a GI condition or you could have asthma and you could be attributing asthma to food when it might not be from food.  I do not think that all the foods but the few you think don't bother you are actually the problem. 

[CMdeux]

I agree-- this sounds like a job for a really good allergy doc who can work alongside a really good GI doc (or maybe pulmo).  Could be something neurological rather than any of that, by the way.  Or it could be that you've generated a somatic response to something that was a problem and isn't now (because you've eliminated one or two things that were truly allergens). 

It's VERY unlikely that this is truly an IgE-mediated allergy problem the way that you describe what has been happening, but it sounds like you already knew that much.

I certainly wish you the very best of luck in figuring this out-- it sounds like a  horrible experience. 

[Josh]

My first thoughts are GERD (acid reflux can cause symptoms that feel like/trigger asthma) and Eosinophilic esophagitis. Ask your doctor(s) about testing and/or medication for those.

The Eosinophilic Esophagitis sounds a lot like my symptoms. I do suffer with gerd but the tightness happens within a few seconds of swallowing. I'll have to bring EOE up next GI visit! Say it was EOE? Am I stuck eating nothing forever. Is there a cure?

[GoingNuts]

Hi Josh!

I agree with all of the above, so I have nothing to add.  I really hope you can get to the bottom of this.  You need a really good allergist with food allergy experience - which is something that not all allergists really have.  And I concur that an experienced GI doc is essential.  You don't mention where you live, but if you give us a general area of the country maybe we can toss out some names?  We actually may have a thread like that somewhere. 

As for whether or not there is a cure for EE, we have a few members who have experience with it.  Hopefully they will pop in.

Best of luck to you.

[ctmartin]

Hi, Josh ... sorry to hear you have been suffering.  You mentioned that you currently suffer from GERD ... are you being treated for it (i.e. taking any medication?)

[Josh]

Hi, Josh ... sorry to hear you have been suffering.  You mentioned that you currently suffer from GERD ... are you being treated for it (i.e. taking any medication?)

On omeprazole 40mg. Now twice a day. Supposed to have a mamorgram soon. They tried one last week but I had a terrible cough reflex when the tube rubbed where my chest gets tight. I'm going to push through this time.

I remember before the PPI I would feel constant acid up to my throat all day long. I'd like to think certain foods might irritate my throat and make it tight. But foods with no acidity get me while keptchup doesn't. But tomatoes do. Weird.

[Josh]

Hi Josh!

I agree with all of the above, so I have nothing to add.  I really hope you can get to the bottom of this.  You need a really good allergist with food allergy experience - which is something that not all allergists really have.  And I concur that an experienced GI doc is essential.  You don't mention where you live, but if you give us a general area of the country maybe we can toss out some names?  We actually may have a thread like that somewhere. 

As for whether or not there is a cure for EE, we have a few members who have experience with it.  Hopefully they will pop in.

Best of luck to you.

Indianapolis Indiana area. I hope someone pops in. I think when I looked into EOE it said my doctor I see can deal with it. I'll bring it up next visit. I've talked about the breathing but not the food because I'm embarrassed I'll look crazy haha. At this point I don't care anymore.

[ctmartin]

The only reason I asked is because I had a freaky bout of sickness last year that ultimately ended up being GERD, and some of our symptoms are similar.  Problem was, I would not believe the diagnosis, since I had never had any problems before, and so I made the mistake of seeing some really nutty doctors.  One had me take a "delayed" allergy test (I do not have any known IGE food allergies) and I came up pretty much positive to everything.  I'm not saying that I did not have anything physically wrong with me (nor am I saying that you do not have anything physically wrong with you), but after that test I became super anxious about eating in general and basically stopped eating.  I, too, did not have much weight to lose, and I got down to 107, nauseous all day long with throat tightening for 6 months before I finally went ahead and took the darn prilosec!  Eight weeks later and I was completely symptom free, and have not had *any* meds in over 6 months ...

[Josh]

The only reason I asked is because I had a freaky bout of sickness last year that ultimately ended up being GERD, and some of our symptoms are similar.  Problem was, I would not believe the diagnosis, since I had never had any problems before, and so I made the mistake of seeing some really nutty doctors.  One had me take a "delayed" allergy test (I do not have any known IGE food allergies) and I came up pretty much positive to everything.  I'm not saying that I did not have anything physically wrong with me (nor am I saying that you do not have anything physically wrong with you), but after that test I became super anxious about eating in general and basically stopped eating.  I, too, did not have much weight to lose, and I got down to 107, nauseous all day long with throat tightening for 6 months before I finally went ahead and took the darn prilosec!  Eight weeks later and I was completely symptom free, and have not had *any* meds in over 6 months ...

This sounds a lot like me. I had a bs IGG test by a nutty wholistic doctor. When I was skin tested I came back severely allergic to watermellon but the blood test said the opposite of my prick test. A test that inaccurate is just dangerous. I avoided wheat, dairy, eggs for 2 years thinking it was legit.

I think there's something more to this than GERD but I'm sure its not helping anything. Its only certain foods that have nothing to do with acid reflux triggers. And it occurs seconds after I eat.

[PurpleCat]

I have no experience to add but I do want to say - you are not crazy!  and don't be embarrassed.  The right doctor will listen and work with you!

[starlight]

One more idea, achalasia. I saw on it on a tv show and know next to nothing about it, but you saying "seconds after eating" and "ketchup but not tomatoes" (i.e. liquid vs. solid) made me think of it.

Everyone is different, so I wouldn't put much stock in what foods "should" be normal reflux triggers or not. 

Please keep us posted with how you're doing!

[lakeswimr]

Look at the APFED website for info about EoE.