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

bo-knows

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bo-knows Newbie
bo-knows
Posted

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
Metoo
Posted

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
bo-knows
Posted
  • Author

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
mommida
Posted

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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    • trents
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      By trents · Posted

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    • Trish G
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    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
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