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Ee With Gluten Free, Food Sensitivity Tests, Oh My!


bo-knows

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bo-knows Newbie

I've been lurking in these forums for awhile, and I figured I'd put my story out there in hopes for some clarification on food sensitivity testing.

I'm 30 now, but ever since I was 18 I had "heartburn" and would food "stuck" in my throat. I've had several upper-endoscopies and they have "stretched" a stricture that I have in my throat a few times... but for the longest time all they could tell me was that I had acid reflux. 2 years ago my GI Doc did a biopsy when he was in there checking things out, because he noticed inflammation (did the other docs NOT notice??). Solid positive for eosinophilic esophagitis, which is (as many of you know) essentially a food allergy that manifests itself in the throat only.

All allergy tests came back negative, but I have anecdotal evidence of gluten being not that good for me. Basically, the allergist did the basic skin-prick style tests and with no conclusion said that this was the best we could do.

I have not yet resorted to an elimination diet, because frankly it is very rare that I even outwardly FEEL anything wrong. I feel like my condition is probably fairly mild and it takes a long time to inflame the esophagus enough to be a problem. This brings me to my actual question: Do you think that food sensitivity stool tests (a la Enterolabs) is worth it for a person like me? I know that there are mixed thoughts on these tests... but unfortunately for me, I have very little outward response to foods... and it is hard for me to accurately assess what is bad for me. I can't quite tell if these tests would even be worth it to me. Maybe I just need to go through a slower elimination diet.


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Metoo Enthusiast

I've been lurking in these forums for awhile, and I figured I'd put my story out there in hopes for some clarification on food sensitivity testing.

I'm 30 now, but ever since I was 18 I had "heartburn" and would food "stuck" in my throat. I've had several upper-endoscopies and they have "stretched" a stricture that I have in my throat a few times... but for the longest time all they could tell me was that I had acid reflux. 2 years ago my GI Doc did a biopsy when he was in there checking things out, because he noticed inflammation (did the other docs NOT notice??). Solid positive for eosinophilic esophagitis, which is (as many of you know) essentially a food allergy that manifests itself in the throat only.

All allergy tests came back negative, but I have anecdotal evidence of gluten being not that good for me. Basically, the allergist did the basic skin-prick style tests and with no conclusion said that this was the best we could do.

I have not yet resorted to an elimination diet, because frankly it is very rare that I even outwardly FEEL anything wrong. I feel like my condition is probably fairly mild and it takes a long time to inflame the esophagus enough to be a problem. This brings me to my actual question: Do you think that food sensitivity stool tests (a la Enterolabs) is worth it for a person like me? I know that there are mixed thoughts on these tests... but unfortunately for me, I have very little outward response to foods... and it is hard for me to accurately assess what is bad for me. I can't quite tell if these tests would even be worth it to me. Maybe I just need to go through a slower elimination diet.

Have you been tested for celiac?

There is some association between EE and celiac.

Open Original Shared Link

bo-knows Newbie

Have you been tested for celiac?

There is some association between EE and celiac.

Open Original Shared Link

I have not specifically been tested for celiac, as the allergist seemed to think it wasn't necessary. I will try to see if I can get them to run the blood test.

I didn't have any reaction to gluten via the skin test though.

mommida Enthusiast

Most "textbook" cases of EE patients test negative to allergy testing.

It is not a true allergy. It is an overactive immune system attacking food "triggers" and damaging the esophagus. Damage may not be limited to just the esophagus.

The elimination diet and determining a list of other "trigger" foods has helped manage my daughter's case. She did not need to go on a feeding tube.

I can't give you any false hope that food sensitivity testing will help in any way. (As doctors still have no clue why Eosinophilic Esophagitus is occuring.)

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      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
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