New Diagnosis

[Wthrman13]

Well, I went to see the doctor again today to hear the results of my biopsies. He said that I was negative for Celiac (small intestine was normal), but that I had Eosinophilic Esophagitis! I talked to my mother about it, and she said that she had that as well (wish I would have known that before!). Things are starting to make sense now, as one of the allergens responsible for EE, I've read, is indeed wheat. However, the doctor did not prescribe any allergy testing, but did prescribe steroids. Basically, I have to use an inhaler, just as if I had asthma, but instead of inhaling the medicine, I need to swallow it. I'm supposed to try this for a month, and then go back for another appointment to see how things are going.

In the meantime, I'm supposed to go back on a normal diet, go off the proton pump inhibitors (which I'm glad, since they were making me very drowsy this past week!), and try treating with these steroids. At some point in the future, I *still* am planning on trying the gluten-free diet, but not right now given this new development (and since it actually could be multiple food allergies at work).

One more thing I would like to mention. I was under the impression that my brother was indeed diagnosed with celiac disease. I just learned last week that he hasn't actually been diagnosed yet, but that the doctors were "strongly suspicious" of it.

I appreciate all the help people have given me on this forum so far, and this isn't the end of the story, but it looks like, at least for now, that I don't have celiac disease after all. In the process of investigating this, however, I have turned up another disorder!

[happygirl]

A good site to check out is www.apfed.org. It is the premier foundation that provides educational materials, etc. on eosinophillic disorders.

[Wthrman13]

A good site to check out is www.apfed.org. It is the premier foundation that provides educational materials, etc. on eosinophillic disorders.

Thanks for the link!

[Fiddle-Faddle]

Is EE an auotimmune disorder? If so, and you have a family HX of celiac, I would think that going back on gluten is the worst thing you could do.

The medical community is only now starting to figure out that gluten can be a trigger for the immune system to attack all sorts of things--skin (DH), thyroid, pancreas, brain, joints--you name it.

Seems like I have read dozens of testimonials in this site about people finally being able to go off the antacids and proton pump inhibitors after going off gluten.

All things considered, I think going off gluten is a lot safer than going on steroids!

Either way, I wish you good health. Best of luck!

[Wthrman13]

Is EE an auotimmune disorder? If so, and you have a family HX of celiac, I would think that going back on gluten is the worst thing you could do.

The medical community is only now starting to figure out that gluten can be a trigger for the immune system to attack all sorts of things--skin (DH), thyroid, pancreas, brain, joints--you name it.

Seems like I have read dozens of testimonials in this site about people finally being able to go off the antacids and proton pump inhibitors after going off gluten.

All things considered, I think going off gluten is a lot safer than going on steroids!

Either way, I wish you good health. Best of luck!

My impression is that EE is not an autoimmune disorder, but is still an immune disorder, where too many Eosinophil white blood cells are produced and congregate in the esophagus. It's essentially an food allergy condition, and your own body is not the target of the immune system in this case.

I understand what you are saying, and part of me is nodding my head in agreement. On the other hand, I am willing to see if this can be controlled with the steroids, at least for a month. I'm willing to see how it works, and if I feel better, then great! In other words, I'm willing to follow the doctor's recommendation for now. If it doesn't work (and probably even if it does), I still plan on trying the gluten-free diet later. My rationale at this point is that I want to perturb one variable at a time, as any good scientific experiment does, and right now it's the steroid treatment's turn. The doctor seemed pretty confident that I did not have celiac disease. Of course, he could be wrong, and I'm not discounting that, but from my perspective, he was the one who actually examined me, and who am I to argue at this point unless I have a real good reason. I do not believe, at this point, that I do. Again, if this steroid treatment doesn't work, that's another thing. I'm not the kind of person to leave any stone unturned!

I hope my reasoning makes sense, and I also hope it doesn't look like I'm giving up on the possibility of a more serious gluten intolerance/celiac disease. I'm definitely not blowing it off. I'm merely trying to go with the flow with all this new information bombarding me the past few weeks. Also, as I stated above, I was mis-informed about my brother's diagnosis. So far it actually has not been confirmed that he has celiac disease, although I was told otherwise at first (long story).

Regarding the proton pump inhibitors, my doctor was in agreement that I should go off of them. I've only been on them a week, and I'll have to say that energy-wise I felt worse taking them than I did before (although today I felt better, so maybe I was starting to get used to them!). The gas pains and other issues didn't change at all.

[Ridgewalker]

I'm confused. If wheat is one of the allergens responsible for EE, why does your doc want to to go back on it?

(I hope you don't feel attacked for your decision, I'd never want that!!! ) I just don't understand that part. I mean, the steroid part makes sense to me, to reduce the gut inflammation I would guess. But why reintroduce such a likely cause of the problem? Wouldn't that fight any improvement that the steroid's trying to accomplish? Then what happens when you go off the steroid?

It may that I'm misunderstanding what EE is, I don't know.

[ravenwoodglass]

I just wanted to note that EE is a common finding for us before the villi are totally destroyed. It was found on my DD endoscopy and after this finding our GI was smart enough to tell us to get her off of gluten because villi damage could have been missed. He also said with a smile that she could continue eating gluten if she wanted until she got to the point I was at. Why he said that with a smile is obvious if you look at my signature. She decided she would rather avoid becoming just like Mom and went gluten free. If I were you I would try the diet first not last.

[Wthrman13]

Thanks for the responses folks. I too am a little confused as to why the doctor prescribed steroids right away instead of an allergy test, but I just don't feel comfortable going against him at this point, especially since he seemed very confident. I'll be the first one to come back and say that I made a bad decision if it turns out in the future that gluten was the whole problem! Again, if I don't improve (and even if I do) I will take further measures, as I said. Raven, it sounds like your GI is a good one!

I am very busy going into this month with my work and I don't relish the prospect of debating with the GI about something that I could have (i.e. celiac disease, especially since all the biopsies were negative) when it is confirmed that I do have something else (EE). On the other hand, I don't relish taking steroids long-term either, and if it is just gluten that is the problem, obviously it makes sense to stop eating that. That's why I'm giving it a month. After this month I'll have a little bit more breathing room to deal with this stuff and look for second opinions, etc. The problem with going gluten free right now and going on steroids at the same time is that I won't know for sure which one did the trick if I do improve.

In other news, I feel much better today after going off that proton pump inhibitor!

I know some of you are probably thinking, "He's making a mistake!", and I will be the first to admit if you are right! I just personally have a good feeling that this is the best course of action right now. And, I really do appreciate the advice and testimonials.

[ravenwoodglass]

Raven, it sounds like your GI is a good one!

Actually he was horrible. I had to fight to get my daughter's endo and he miss diagnosed me for over 5 years when I was horribly sick with D night and day. All because my blood work didn't show up positive. An allergist (MD)was the one who really diagnosed me with an elimination diet after years of toxic meds to control my IBD/IBS, arthritis, migraines, fibro etc. The GI almost killed me when he demanded a gluten challenge and endo to confirm my diagnosis. I did it and ended up hemmorhaging. but I got my diagnosis. I insisted on getting my DD endo because she had a lot of symptoms like mine in additon to horrible gerd that would leave her prostrate on the floor at least once a week.

[Wthrman13]

Actually he was horrible. I had to fight to get my daughter's endo and he miss diagnosed me for over 5 years when I was horribly sick with D night and day. All because my blood work didn't show up positive. An allergist (MD)was the one who really diagnosed me with an elimination diet after years of toxic meds to control my IBD/IBS, arthritis, migraines, fibro etc. The GI almost killed me when he demanded a gluten challenge and endo to confirm my diagnosis. I did it and ended up hemmorhaging. but I got my diagnosis. I insisted on getting my DD endo because she had a lot of symptoms like mine in additon to horrible gerd that would leave her prostrate on the floor at least once a week.

Oh dear, sorry to hear about your problems. It just sounded like in your last post that he was ok when you mentioned that he was smart enough to mention that the villi damage might have been missed. I take it he knows better now?