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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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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